SAFER TRANSITIONS, FEWER RE-HOSPITALIZATIONS WITH …Safer Transitions, Fewer Re-Hospitalizations with PAH: An Interdisciplinary Guide Clinician-Level Barriers • Multiple clinicians

AN INTERDISCIPLINARY GUIDE

SAFER TRANSITIONS, FEWER RE-HOSPITALIZATIONS WITH PAH:

Workgroup Members:

Cheri Lattimer, RN, BSN Executive Director National Transitions of Care Coalition Washington, DC

Kathleen Fraser, RN-BC, MSN, MHA, CCM President, National Board of Directors Case Management Society of America Little Rock, AR

Danielle Pierotti, RN, PhD, CENP, AOCN, CHPN Vice President Quality and Performance Improvement Visiting Nurse Associations of America Arlington, VA

James E Lett, MD, CMD Internal Medicine Physician Chief Medical Officer Vice President Medical Affairs Avar Consulting Rockville, MD Director of the National Board National Transitions of Care Coalition Washington, DC

H Edward Davidson, PharmD, MPH Assistant Professor of Clinical Internal Medicine Eastern Virginia Medical School Partner, Insight Therapeutics, LLC Norfolk, VA

Contributing Author:

Cherilyn L Heggen-Peay, PhD PRIME Education, Inc.

Accredited for 2.0 hours of ACCME, ACPE, ANCC, and CCMC credit. For learning objectives, faculty, and accreditation information, please view page 39. Please review this information before you start this activity.

2 of 39 © 2016 PRIME Education, Inc. All Rights Reserved. www.primeinc.org

Table of Contents Introduction

Scope of the Problem in PAH ............................................................................................................................ 3

Barriers to Effective Care Transitions in PAH .................................................................................................... 4

Benefits of Continuity of Care ........................................................................................................................... 5

Purpose and Scope of This Clinical White Paper ............................................................................................ 6

Guiding Principles .............................................................................................................................................. 6

Outcomes Expected from Implementation of These Recommendations..................................................... 7

Considerations in PAH Transitions of Care

Tools to Facilitate Transitions of Care in PAH .................................................................................................. 7

Guideline-Directed Therapies for PAH ............................................................................................................. 8

Care Setting Commitment ................................................................................................................................ 8

Patient and Family/Caregiver Engagement and Education in Transitions of Care ...................................... 9

Working with the Interprofessional Team in Transitions of Care .................................................................. 10

Interprofessional Communication and Collaboration ................................................................................... 15

Special Considerations for Patients with PAH and Comorbid Conditions .................................................. 21

Support and Follow-Up Care .......................................................................................................................... 22

Implementation of a Care Transition Program

A Care Transition Pathway for PAH ................................................................................................................. 22

Advance Care Planning .................................................................................................................................... 24

Quality Measures and Assessment of Care Transition Management .......................................................... 25

Summary

References ........................................................................................................................................................ 26

Resources

Appendix I. Additional Resources .................................................................................................................. 28

Appendix II. Taking Care of My PAH Health Care ......................................................................................... 29

Appendix III. 7 Essential PAH Care Transition Interventions ......................................................................... 31


Safer Transitions, Fewer Re-Hospitalizations with PAH: An Interdisciplinary Guide

INTRODUCTION

Scope of the Problem in PAH

Pulmonary arterial hypertension (PAH) is a type of pulmonary hypertension (PH), an uncommon condition of the pulmonary vasculature associated with elevated pulmonary arterial pressure (PAP), which, if left untreated, can result in right ventricular heart failure and death. Contemporary analyses estimate the prevalence of PAH in the US to be 12.4 cases/million.1 Despite its relative rarity, PAH has a considerable impact with high rates of morbidity, hospitalization, and mortality. In addition, healthcare costs and resource utilization for PAH patients are significant.2 PAH is characterized by a combination of pre-capillary PH and elevated PAP as defined by pulmonary artery wedge pressure ≤ 15 mmHg, pulmonary vascular resistance > 3 Wood units, and PAP ≤ 25 mmHg.3 A patient’s functional status is a strong predictor of mortality and an important factor in making decisions about appropriate therapy.4,5 It is commonly assessed using the World Health Organization (WHO) functional classification in which Class I represents no limitations in physical activity and Class IV describes patients with severe limitations in physical activity (Table 1).6 Symptomatology is generally non-descript and may include dyspnea, fatigue, weakness, chest pain, syncope, abdominal distention, and/or ankle swelling.7 Because PAH is relatively rare and its symptoms nonspecific, PAH is often under-recognized and diagnosis is delayed as numerous diagnostic tests are conducted to rule out other, more common, diseases before right heart catheterization is performed for definitive diagnosis of PAH.7 It is not surprising that patients with PAH often see multiple providers beginning at an early stage, even before they are diagnosed, as they navigate a long, difficult, and circuitous path to diagnosis. In fact, in an analysis of 2,525 patients with PAH in the Registry to Evaluate Early and Long-term PAH Disease Management (REVEAL Registry), the mean length of time from onset of symptoms to diagnosis was 2.8 years.8 With this delay, patients are often classified as WHO functional class III or IV by the time they are diagnosed, missing opportunities for early intervention that may improve patient outcomes.9 Even once they are diagnosed, patients may experience a delay in receiving therapy or in receiving appropriate therapy aligned with evidence-based guidelines. The Referral of Patients With Pulmonary Hypertension Diagnoses to Tertiary Pulmonary Hypertension Centers (RePHerral) study found that 57% of the prescribed medications for patients who were on PAH-specific therapies at referral to a PH specialist were not consistent with published guideline recommendations.10 The analysis demonstrated that even patients with the most severe disease were not always receiving guideline-directed therapy. Almost half of the WHO Functional Class IV patients in the REVEAL Registry were not on prostanoids and, even more alarmingly, 15% were on oral monotherapy despite their Class IV functional status.8 This gap in alignment with the guidelines likely contributes to the high rates of re-hospitalization observed with PAH.11,12 It has been reported that as many as 75% of patients are readmitted to the hospital within 1 year of a PAH-related hospitalization, with 20% of these patients being readmitted within 30 days of discharge.13

Table 1. World Health Organization (WHO) Functional Classification of Patients with Pulmonary Hypertension6

Classification Physical Activity SymptomsDyspnea, Fatigue, Chest Pain, Syncope

Class I No limitation None upon ordinary physical activity

Class II Slight limitation Symptoms appear upon ordinary physical activity

Class III Marked limitation Symptoms appear upon less than ordinary activity

Class IV Severe limitationSymptoms appear upon any physical activity or may be present at rest; signs of right heart failure present



Several oral, inhaled, subcutaneous, and intravenous therapies targeting different disease pathways are now available for treatment of PAH and these are reviewed in more detail in “Guideline-Directed Therapies for PAH” (page 8). However, accessing appropriate therapy can be a challenge for PAH patients and they may need sup-port navigating insurance requirements or sourcing PAH medications that are only available through specialty pharmacies. In addition, management of PAH with these therapies is highly complex. For example, parenteral prostacyclins are life-saving for patients with severe disease, but have a limited therapeutic dosing range, require administration via a continuous infusion with a pump, and carry high risk.14 Transitioning patients to new pumps may require a change in the pump rate or medication concentration, thereby increasing the potential for errors.15| In a national survey that examined prostacyclin administration in PAH patients in the inpatient setting, 68% of healthcare professionals reported serious or potentially serious errors in medication administration, including incorrect cassette usage, inaccurate pump programming, improper drug dosing, and premature cessation of the pump.16 Nine of the errors were believed to have contributed to patient deaths.16

Patients need substantial education and support to navigate transitions, including transition to self-care at home after diagnosis, hospitalization, or a change in therapy. The presence of comorbidities adds to the challenge. In an analysis of 2,438 patients with PAH in the REVEAL Registry, 40% of patients had hypertension, 29% had collagen vascular disease (CVD)/connective tissue disease (CTD), 25% had clinical depression, 22% had thyroid disease, and 12% had diabetes.8 The complexity of management of patients with PAH highlights the need for patients to be referred to PH specialists or PH centers. However, this is often delayed and many patients are in advanced stages of disease by the time of referral.10

Barriers to Effective Care Transitions in PAH

Vulnerable points in transitions of care for patients include: hospital admission, internal transfers (eg, from emer-gency room [ER] or intensive care unit [ICU] to wards), and discharge to other care settings, including the home. Some care settings, such as long-term care facilities and skilled nursing centers for rehabilitation, are often not equipped to care for patients on PAH-specific therapies, especially for those on prostanoids. Such facilities may not have the expertise to administer these medications or may not stock them due to cost. In some cases, patients may use their own medications from home, but this is often not covered by insurance, resulting in significant costs for the patient.17 Barriers to effective transitions of care are identified at different levels, including the delivery system, clinician, and patient.18,19

Delivery System-Level Barriers

• Care settings often function as “silos” that do not communicate and share information effectively, making care coordination difficult. This can be challenging for patients with PAH who may be seen in multiple care settings to manage primary health and comorbidities in addition to PAH.

• Although more health records are now computerized, they are not standardized and compatible across systems, thereby preventing the timely transfer of health information across care settings.

• Cost also presents a significant barrier as there is often no financial incentive for the additional time and resources needed for comprehensive care coordination.

• In some cases, different care settings may be bound by different formularies, necessitating temporary substitutions in medications, which must be handled especially carefully in fragile patients such as those with PAH. These medication changes can cause challenges in managing side effects, drug interactions, and may cause confusion for patients, caregivers, and clinicians as medications are switched during transitions to and from care settings.

• Insurance coverage may also affect medication decisions, necessitate a change in provider or care setting, or dictate length of a hospital stay.



Clinician-Level Barriers

• Multiple clinicians typically provide ongoing care for patients with PAH. A primary care physician (PCP) may provide routine care while a PH specialist oversees treatment of PAH and other specialists manage asso-ciated comorbidities such as connective tissue disease, diabetes, or cardiovascular disease. Unfortunately, these clinicians may not have established relationships to facilitate consistent coordinated communication with each other.

• Compounding this problem is the consultation of multiple specialists for the same patient, which is problem-atic when patients are hospitalized. This may result in duplicate tests or unnecessary medication changes.

• Rather than a single care manager providing longitudinal care across settings, patients, especially patients with multiple comorbidities, may work with multiple care managers, further complicating the continuum of care.

• There is also a lack of awareness of PAH across a variety of direct care providers, nurses, therapists, pharmacists, and others. Many clinicians do not see or treat patients with PAH very often.

Patient-Level Barriers

• Patients and caregivers may assume their healthcare providers are coordinating and communicating across the care continuum and may not proactively advocate for themselves until problems occur.

• Low health literacy, cultural barriers, or older age may limit understanding of the disease and care needs, affecting the patient’s ability to advocate during care transitions, thereby increasing the risk for hospital re-admissions.

• Patients may not feel confident to speak up and share their preferences or fully engage in shared decision-making.

• Patients may not be provided with sufficient information in a manner they can access to understand the complex-ity of their disease, treatment, and associated conditions and to navigate the labyrinth of the healthcare system.

• High level of understanding and skill level required for advanced PAH treatments, such as infused therapies, may make it difficult for patients with PAH to transition seamlessly to self-care at home, especially for patients with comorbidities or depression.

• Inadequate communication with caregivers may compromise care as caregivers for patients with PAH are often the ones visiting the pharmacy, assisting with medication administration, etc.

• Patients may receive conflicting information from different care settings, causing confusion.

Benefits of Continuity of Care

Continuity of care is the quality of care over time, the importance of which is now recognized by many national healthcare organizations, including the Agency for Healthcare Research and Quality (AHRQ), National Quality Forum (NQF), National Transitions of Care Coalition (NTOCC), and the Joint Commission.20 Care coordination is an integral part of the continuity of care. AHRQ describes care coordination as “deliberately organizing patient care activities and sharing information among all of the participants concerned with a patient’s care to achieve safer, more effective care.”21

Better continuity of care is associated with lower risk for inpatient hospitalization, ER visits, and complications, thereby reducing healthcare costs and improving patient outcomes.22 In a randomized trial of 749 patients in an urban hospital setting in Boston, discharge services, such as follow-up appointment assistance, medication reconciliation, and patient education, decreased ER visits and 30-day hospital readmissions by 30%.23 In other studies, the use of “transition coaches” and advanced practice nurses to help coordinate care, provide continuity across settings, and to encourage patients and caregivers to engage in a more proactive role during care transitions has also shown to reduce re-hospitalization rates.24,25 For patients with PAH, potential benefits of better continuity of care may include



improved stamina and confidence to work longer, participate in family life, and actively participate in their own care and self-management.

The NTOCC has identified “7 Essential Intervention Categories” to improve continuity of care during transitions. These interventions will be addressed throughout this paper as they relate to PAH and include:

1. Medication Management

2. Transition Planning

3. Patient and Family Engagement/Education

4. Information Transfer

5. Follow-Up Care

6. Healthcare Provider Engagement

7. Shared Accountability Across Providers and Organizations

Purpose and Scope of This Clinical White Paper

This clinical white paper focuses on transitions of care experienced by patients with PAH between settings, including primary care, specialty care, PH centers, acute care settings (eg, ER, hospital), long-term care and skilled nursing facilities, and the patient’s home. Designed for healthcare professionals across the care continuum, the purpose of this guide is to outline pathways to:

• Break down barriers to smooth care transitions

• Improve education and awareness

• Enhance efficient and accurate bi-directional transfer of essential patient health information

• Equip patients and families/caregivers for self-management and advocacy

Guiding Principles

The underlying principle serving as the foundation for this guide is that necessary care transitions for patients with PAH should be safe and unnecessary transitions (eg, re-hospitalizations) should be prevented. A “Transitions of Care Consensus Policy Statement” was released in 2009 by multiple national healthcare organizations, including the American College of Physicians (ACP), Society of General Internal Medicine (SGIM), Society of Hospital Med-icine (SHM), American Geriatrics Society (AGS), American College of Emergency Physicians (ACEP), and Society of Academic Emergency Medicine (SAEM).26 This joint consensus statement highlighted 9 key principles central to transitions of care that are highly relevant to the care transitions for patients with PAH discussed in this guide:26

1. Accountability

2. Communication

3. Timely information transfer

4. Patient and family/caregiver engagement

5. Respected coordination of care (eg, care hub)

6. Medical home or coordinating clinician for all patients and their families/caregivers

7. At each transition point, patients and families/caregivers need to know who is responsible for the patient’s care

8. National standards

9. Standardized metrics/quality measures



In the principles outlined on the previous page, the authors of this guide emphasize the role of the interprofessional team in care transitions and the need for shared accountability to ensure smooth transitions across care settings. In addition, communication and transfer of patient health information should be bi-directional (both in the new care setting and original care setting) to prevent miscommunication, medical errors, and unnecessary procedures. The needs and wishes of the patient should be paramount throughout the continuum of care by actively engaging patients and families/caregivers at each transition and promoting a culture of patient-centered care. Policies should establish a recognized “care hub” as well as medical home or coordinating clinician to oversee communication/information transfer and prevent duplication of efforts. Providers across care settings should follow evidence-based guidelines in the treatment and management of patients with PAH. Furthermore, care settings should establish system-based care coordination programs aligned with national standards to ensure consistent, quality care transitions across settings. Standardized metrics should be used to assess care coordination on an ongoing basis.

Outcomes Expected from Implementation of These Recommendations

This guide outlines care pathways designed to ensure safer transitions and fewer hospitalizations for patients with PAH. Specifically, anticipated benefits of these recommendations include:

• Reductions in: » Unnecessary care transitions

» Avoidable hospital readmissions

» Healthcare costs (due to avoidable hospitalizations, unnecessary care transitions, duplication of efforts, including diagnostic testing)

» Medication-related adverse events

» Medical errors

• Improvements in: » Patient and caregiver engagement and advocacy throughout the care continuum

» Identification of issues for early intervention to delay functional decline

» Patient safety and outcomes

» Patient and caregiver satisfaction with care

CONSIDERATIONS IN PAH TRANSITIONS OF CARE

Tools to Facilitate Transitions of Care in PAH

Although general resources are available to assist in transitions of care, tools specifically designed to facilitate transitions of care for patients with PAH are lacking. Included in the appendices of this white paper are 2 new tools to bridge this gap: (1) NTOCC’s “7 Essential PAH Care Transition Interventions” and (2) NTOCC’s “Taking Care of My PAH Health Care,” a tool for patients that includes a medicine list template.



Guideline-Directed Therapies for PAH

Multiple classes of vascular-targeted therapies are approved for the treatment of PAH. Based on their vasodilatory effects, calcium channel blockers (CCBs), such as diltiazem, amlodipine, and nifedipine, were the first agents to be used widely for the treatment of PAH. However, it was later shown that few patients with PAH demonstrated vas-oreactivity, and therefore were unlikely to respond to CCB therapy. Furthermore, after 1 year of treatment, CCBs delayed progression to functional class III in only 50% of patients.27 Endothelin receptor agonists, such as bosen-tan, ambrisentan, and macitentan, improve exercise capacity, quality of life, hemodynamics, and time to clinical worsening in patients with PAH.28,29 Phosphodiesterase type 5 (PDE-5) inhibitors, such as sildenafil and tadalafil, are also effective for patients with PAH and have been shown to improve symptoms, exercise tolerance, and func-tional capacity.28,29 Improved 6-minute walk distance, pulmonary vascular resistance, NT-proBNP levels (a measure of heart muscle failure, such as in chronic heart failure), WHO functional class, and time to clinical worsening have been demonstrated with riociguat, a guanylate cyclase stimulator.30-32 Intravenous prostacyclin analogues have been shown to increase long-term survival of patients with PAH, although they are primarily reserved for high-risk patients due to the complexity and risks associated with administration.33,34 However, several forms of prostacyclin analogues are now available, including intravenous (epoprostenol and treprostinil), subcutaneous (treprostinil), inhaled (iloprost and treprostinil), and most recently, oral (treprostinil). The newest approved agent, selexipag, which selectively activates the prostaglandin-I2 receptor agonist and also targets the prostacyclin pathway, delays disease progression and reduces the risk of hospitalization for patients with PAH.35

Two significant guidelines were published recently that address the treatment and management of PAH: the 2014 CHEST guidelines and 2015 ESC/ERS guidelines.6,36 Both evidence-based guidelines recommend front-line oral therapy for low-risk patients (WHO functional class I/II) with PAH, with prostacyclin analogues forming the basis of therapy for those with more severe disease. Traditionally, PAH in patients with lower risk has been treated with initial monotherapy followed by sequential additive therapy if an inadequate clinical response is observed. How-ever, recent evidence indicates that earlier, more aggressive therapy may benefit patients with PAH.37 Based on this evidence, the FDA approved the initial and concurrent combination of ambrisentan and tadalafil for front-line treatment of treatment-naïve WHO Group 1 PAH patients and the recommendation for upfront oral combination therapy for functional class II/III patients with WHO Group 1 PAH was included in the 2015 ESC/ERS guidelines. The 2014 CHEST guidelines were developed and published before the results of the combination trial were released.

Care Setting Commitment

Commitment from senior leadership in the care setting is essential to implement system-level processes for effec-tive transitions of care.17 Consistently visible support from senior leadership helps break down barriers and pro-vides oversight/accountability, ethical commitment, resources/training, and facilitates system-wide engagement. The business case to achieve care setting commitment is driven by the need to reduce medical errors, improve adherence to national quality measures and ethical standards, prevent adverse drug events, decrease re-hospital-izations, and improve patient outcomes. Establishment of quality measures and regular data collection is useful to demonstrate the positive impact of transition improvements on the care setting to ensure continued support.17

Leadership support is a critical factor for sustainability of care transition intervention programs.38 Key factors that facilitate care setting commitment and promote sustainability are:39

• Low resource requirements

• Customization to the care setting

• Alignment with the care setting’s mission, objectives, and routines

• Presence of a program champion who promotes continuation



Leaders are able to promote system-wide transformation by infusing change throughout the processes, highlight-ing urgency, setting direction, sharing expectations, and providing resources.40 These are key elements for sustain-ing successful transitions of care long-term programs.

Patient and Family/Caregiver Engagement and Education in Transitions of Care

Patient engagement was identified by the Joint Commission as a foundational element to support safe transitions of care.41 Studies are also beginning to examine the important role that families and caregivers provide in tran-sitions of care, including medication management and arranging post-transition care plan tasks.42,43 Root cause analysis by the Joint Commission of 197 sentinel events (including suicide, falls, and wrong-site surgery) between January 2014 to October 2015 revealed failures in communication (127 incidents), education (eg, not assessing effectiveness or not providing education; 26 incidents), and patient rights (eg, incomplete informed consent or lack of patient engagement in healthcare planning; 44 incidents).41 Health literacy, a core component of patient and family/caregiver engagement, has been identified as a predictor of 30-day hospital readmissions.44,45

Several practices have emerged that facilitate patient and family/caregiver engagement to reduce such events during care transitions, including:41

• Promoting shared decision-making

• Developing and implementing system-wide programs

» 24/7 visitation policies for families

» Physician/interdisciplinary rounds and nurse shift reports at patient’s bedside

» Patient-centered discharge planning

» Patient-accessible electronic health records (EHRs)

» Patient involvement on quality improvement, patient care, and patient safety committees

» Patient and family/caregiver education on disease management

In addition, to support patient engagement during the transition from the hospital, AHRQ has developed “Strategy 4: Care Transitions from Hospital to Home: IDEAL Discharge Planning,” which includes similar elements involving patient and family/caregiver discussions, education, and assessment (Table 2).46

Table 2. AHRQ’s Strategy 4: Care Transitions From Hospital to Home: IDEAL Discharge Planning46

Include the patient and family as full partners in the discharge planning process

Discuss with the patient and family 5 key areas to prevent problems at home

• Describe what life at home will be like• Review medications• Highlight warning signs and problems• Explain test results• Make follow-up appointments

Educate the patient and family in plain language about the patient’s conditions, the discharge process, and next steps at every opportunity throughout the hospital stay

Assess how well doctors and nurses explain the diagnosis, condition, and next steps in the patient’s care to the patient and family; use “teach-back”

Listen and honor the patient’s and family’s goals, preferences, observations, and concerns



These common elements for improving patient and caregiver engagement across transitions of care support specific recommendations to improve engagement for patients with PAH and their families/caregivers (Table 3). More specifically, these recommendations focus on PAH education and counseling of patients and their families/caregivers to enhance active participation in their own care, including shared decision-making. Providers should ask the patient about his or her own treatment goals and listen to questions and concerns.47 Risks and benefits of available PAH treatment options should be discussed with the patient, including different methods of delivery (eg, oral, subcutaneous, intravenous, inhaled). Information on available resources, such as PH care centers, advocacy organizations, support groups, and reliable web-based sources of information, should also be provided.

Working with the Interprofessional Team in Transitions of Care

The interprofessional team, including the patient and family/caregiver, plays a central role in ensuring safe tran-sitions and reducing re-hospitalizations for patients with PAH. Multidisciplinary coordination is required across several fronts, from transition planning to effective medication management and accurate bi-directional transfer of essential patient health information. Not all care settings will have all roles, but it is important that the responsibili-ties be covered by someone in the team to ensure comprehensive care for the PAH patient. It is essential that each team member knows, understands, and commits to his or her role. Within each care setting, specific care transition responsibilities should be identified for each individual and discipline. Training and education on management of care transitions and leading practices for information transfer should be provided across all levels. For patients with PAH, interprofessional coordination is required between the primary care team and specialists who may be managing PAH or comorbidities, especially during transitions in and out of the hospitalized setting.

Table 3. Essential PAH Care Transitions Intervention: Patient and Family/Caregiver Education and Engagement

Ensure patients and families/caregivers are knowledgeable about PAH and have a plan of care they can understand and implement:

• Assess health literacy48 and gaps in the patient’s and family’s/caregiver’s knowledge of PAH, their understanding of how to be independent in managing their medication therapies and oxygen, and the need for close supervision during the first 3 months for newly diagnosed patients; recognize that health literacy may differ significantly between patients and caregivers• Patient’s and family’s/caregiver’s understanding of “red flags” for PAH symptom escalation and whom they need to contact for support• Interaction with social workers, home health, and community staff providing coaching and counseling in support of coping and self-management

Patient and family-centered transition communication• Use a multidisciplinary approach to patient and family communication ensuring that the care team, patient, and family/caregiver are speaking the same language/information• Health literacy cannot be stressed enough with PAH patients and families/caregivers• Support dialogue on advance-care planning and the needs of the patient and family• Providing real-time face-to-face discussions with patients and families/caregivers is key to eliminating miscommunication, which directly contributes to medication errors, missed follow-up care, and hospital readmissions

Developing self-care management skills• Assess patient’s and family’s/caregiver’s ability to manage their medication therapies, including infusions and oxygen• Provide opportunity for appropriate patient teach-back and discussion of risk issues• Develop a nutrition plan with the patient and family/caregiver assessing concerns related to culture, financial, and social burden• Goal of asking and supporting patients and families/caregivers to take responsibility for monitoring their own healthcare needs on a day-to-day basis, maintaining an up-to-date medication list, and how and when to seek appropriate assistance when needed



Interprofessional Roles

Role of the Primary Care Team (Primary Care Physician, Nurse Practitioner, Physician Assistant, Medical Home, Supervising Clinic, etc.)

• Have or obtain essential knowledge of PAH

• Sustain essential knowledge of PAH through clinical updates on advancements in PAH care

• Follow evidence-based guidelines for PAH care

• Whenever possible, all PAH patients should be referred to expert PH care centers

• Ability and willingness to work with accredited PH specialty sites and appropriate other regional PH care sites to perform community care for PAH patients if clinically appropriate. This includes: » Notifying PH specialty sites of changes in condition

» Regularly communicating with specialty PH sites on patient status

» Implementing changes in care plan as directed by PH specialty sites

» Referral back to the specialty care sites as needed

Role of the Hospital Care Team (Hospitalist, Consultants, Nursing, Case Managers, Palliative Care, Pharmacist, and others as care dictates)

PAH patients will inevitably incur hospital admissions in non-PH specialty institutions in the course of their PAH. The team responsibilities include:


• Sustain essential knowledge of PAH through clinical updates on advancements in PAH care


• Refer PAH patients to expert PH care centers as appropriate

• Ability and willingness to work with accredited PH specialty sites and appropriate other regional PH care sites in order to deliver quality care for PAH patients during the hospital stay. This includes:

» Notifying PH specialty sites of changes in condition

» Implementing changes in care plan as directed by PAH specialty sites


» Communicating with specialty PH sites on patient status as indicated

» Expedient transfer of patients on prostanoid therapies to specialty PH care centers from centers without experience with these or who do not stock these medications is essential as interruption of therapy can result in rebound PH, right ventricular failure, and death

Role of the Care Continuum Team

Although not an option for patients with advanced PAH on prostanoid therapies, some PAH patients may incur Post-Acute Care (PAC) in non-PH specialty institutions in the course of their PAH. Involved sites of care may include a Skilled Nursing Facility (SNF), Inpatient Rehabilitation Facility (IRF), Long-Term Acute Care Hospital (LTACH), Home Health Agency (HHA), Hospice, or others. The team responsibilities include:


• Sustain essential knowledge of PAH through clinical updates on advancements in PAH care when these patients are in their facility




• Refer PAH patients to expert PH care centers as appropriate

• Ability and willingness to work with accredited PH specialty sites and appropriate other regional PH care sites in order to deliver quality care for PAH patients during their stay. This includes:

» Notifying PH specialty sites of changes in condition

» Implementing changes in care plan as directed by PH specialty sites


» Communicating with specialty PH sites on patient status as indicated

Role of the PAH Specialist

• Promote and follow evidence-based guidelines

• Maintain knowledge on advancements in PAH care

• Elevate the profile of PAH to improve its recognition and diagnosis

• Continuously educate and update the clinical community on PAH

• Continuously educate and update the general community on PAH

• Partner with the community primary care team in the care of PAH patients to allow quality PAH care to be maintained in the community setting

• Partner with the hospital care team and care continuum team as necessary to sustain quality care for PAH patients as they enter other sites of care during their course of disease, and experience decline in clinical status

Role of the Community Pharmacist

• Work with patient and family caregiver to develop accurate and complete medication lists

• Communicate accurate list of medications to specialty pharmacy when requested

• Identify medication-related problems, including drug interactions with specialty medication

• Communicate all relevant medication-related problems to the appropriate members of the clinical care team, including primary and specialty care and nursing staff

• When possible, and appropriate, discuss the patient’s individual beliefs and goals of care

Role of the Hospital/Acute Care Pharmacist

• Perform medication reconciliation on intake to hospital and discharge

• Create best possible medication history so care can be provided with full knowledge of medication history during hospital stay

• Create best possible medication discharge plan on departure from hospital

• Review plan with patient and family caregiver and assess understanding of plan

• Assure equipment needs are discussed if needed (eg, infusion pumps, supplies)

• Communicate best possible discharge plan to relevant providers, including primary and specialty care and nursing staff



Role of the Specialty Pharmacy Pharmacist

• Assess resource needs for administration of specialty medication in the home, particularly for parenteral medications

• Assess the patient’s ability to administer medication in home

• Communicate with relevant providers, including primary and specialty care, specialty PH center, and nursing staff, when needed to resolve any issues regarding specialty pharmacy medication use

• Assess need for home healthcare services to assist with medication administration

• Provide access to resources for patient and family/caregiver for questions about administration and adverse effects of specialty medications

Role of the Long-Term Care/Skilled Nursing Facility/Consulting Pharmacist

• Provide medication regimen review and communicate relevant findings to PCPs

• Provide comprehensive medication review for selected PAH patients when possible

• Communicate all relevant medication-related problems to the appropriate members of the clinical care team, including primary and specialty care and nursing staff

• Serve as a resource to nursing facility staff on administration and monitoring of specialty medication for PAH; however, patients on prostanoid therapies should be managed by a specialty PH care center due to the complexity and high risk of these medications

Role of the Patient and Family/Caregiver

• Understand PAH disease basics

• Understand physical abilities/limitations

• Discuss lifestyle issues (eg, healthy eating and physical exercise)

• Discuss psychosocial issues (eg, anxiety, depression)

• Proactively ask questions, share preferences, and advocate for own care

• Understand risks and benefits of available treatment options

• Fully engage in care planning and shared decision-making

• Discuss health insurance options, coverage

• Understand PAH treatment/medication plan and how to obtain medication through the specialty pharmacy

• Take an active role in self-management

• Know which symptoms trigger a need to notify the provider

• Patients on prostacyclins: competent in intravenous/subcutaneous infusion mixing, cassette change, central line care, addressing emergency line issues; competent in management of inhaled prostacyclin adminis-tration, knowledge that if on oral prostacyclins that inability to take orally (eg, severe gastroenteritis) after 2 days constitutes medical emergency that may require hospitalization for equivalent dose of intravenous prostacyclin

• Patients on oxygen: competent on managing oxygen administration, maintaining equipment

• Know when follow-up appointments are scheduled

• Maintain an accurate and up-to-date medication list and take it to every appointment and ER visit

• Take medications as prescribed and notify clinician of any changes

• Know available resources, including patient support groups (eg, PHCentral, Pulmonary Hypertension Asso-ciation [PHA]) and accredited PH care centers



Role of the Accredited PH Care Centers

In 2011, PHA launched an initiative to accredit centers across the US with specialized expertise in PH “who have demonstrated a commitment to providing expert-level care based on PH consensus guidelines.”49 The goal of this initiative is to improve the quality of care and outcomes in patients with PH, especially those with PAH, by promoting:

• Comprehensive patient care

• Patient education

• Standardization of care

• Patient information flow

• Coordinated care

Two types of centers with demonstrated expertise and capability in PH are accredited through this program: Centers of Comprehensive Care (CCCs) and Regional Clinical Programs (RCPs). A list of accredited centers is avail-able through PHA’s website: www.phassociation.org/PHCareCenters/MedicalProfessionals/AccreditedCenters.

While both types of centers must proficiently evaluate and treat patients with PH according to evidence-based guide-lines, CCCs are distinguished by their expertise in advanced parenteral therapies and contributions to PH research and education. For a PH center to be recognized as either a CCC or RCP, specific criteria must be met (Table 4):

Referral of patients with PAH to specialized PH centers whenever possible is consistently endorsed across several major professional organizations and medical specialty societies.6,33,36 The accreditation criteria outlined above highlight the key role that PH centers can play in treating and managing patients with PAH. These centers provide specialized expertise and standardized, evidence-based, guideline-directed care for PAH patients. They also act as a centralized hub for coordinated care by the multidisciplinary team, including PH specialists, cardiologists, pulmonologists, nurses, radiologists, psychologists, and social workers.

Table 4. PHA Accreditation Criteria for PH Centers of Comprehensive Care (CCCs) and Regional Clinical Programs (RCPs)

Center Director, Center Coordinator

Must have appropriate training and experienceMust be actively involved in professional meetings and education of other professionals on PAH

PH Program Must be actively managing a substantial cohort of PH patients

CenterMust have easily accessible referrals to appropriate specialistsAccept Medicare/MedicaidHave the ability to accept transfer of referred patients on an expedited basis (CCCs only)

Facility

Must have the following services available:- Inpatient/ICU wards- Cardiac catheterization laboratory- Echocardiography laboratory- Pulmonary function laboratory- Exercise testing facility- Radiology- Pharmacy with parenteral therapy (CCCs only)

Research For CCCs, center staff must be actively involved in clinical research



Interprofessional Communication and Collaboration

Because of the complexity of PAH, care at transition points should be a coordinated multidisciplinary effort by the key stakeholders described above and may include collaboration on diagnostic testing (including right heart catheterization for definitive diagnosis of PAH), PH specialist or PH care center referral, therapy initiation or switch-ing, medication management, patient education, care planning, comorbidity management, hospital admission/discharge, transition to self-management, management of adverse events, and lung transplantation.50 To ensure safe transitions and reduce re-hospitalizations for patients with PAH, healthcare providers must be actively en-gaged and possess shared accountability. Interprofessional care coordination in PAH is endorsed by recognized guidelines for PAH:

2014 CHEST Guidelines:6

“We suggest collaborative and closely coordinated care of PAH patients involving the expertise of both local physicians and those with expertise in PAH care (Grade of Recommendation: CB). Appropriate care may require the coordinated efforts of cardiologists, pulmonologists, rheumatologists, primary care, or other specialties.”

2015 ESC/ERS Guidelines:36

“It is recommended for referral centers to provide care by a multiprofessional team (cardiology and respiratory medicine physicians, clinical nurse specialist, radiologist, psychological and social work support, appropriate on-call expertise (Grade of Recommendation: IC).”

“Referral centers are recommended to provide care by an interprofessional team that should, as a minimum, comprise:

• 2 consultant physicians (normally from either or both cardiology and respiratory medicine) experienced in and with a special interest in PH with dedicated PH clinical sessions for outpatients, inpatients, and a multidisciplinary team meeting

• Clinical nurse specialist

• Radiologist with expertise in PH imaging

• Cardiologist or PH physician with expertise in echocardiography

• Cardiologist or PH physician with expertise in right heart catheterization and vasoreactivity testing

• Access to psychological and social work support

• Appropriate on-call cover and expertise”

Coordinated care to ensure safe transitions is especially true for special patient populations, including patients who may be transferred to a new care setting due to pregnancy or the need for surgery:

2014 CHEST Guidelines:6

“When pregnancy does occur, we suggest care at a PH center, using a multidisciplinary approach including the PH, high-risk obstetrical and cardiovascular anesthesiology services (Grade of Recommendation: CB).”

“In patients with PAH, we suggest avoiding nonessential surgery, and when surgery is necessary we suggest care at a PH center, using a multidisciplinary approach including the PH team, the surgical service, and cardiovascu-lar anesthesiology with careful monitoring and management of clinical status, oxygenation, and hemodynamics postoperatively (Grade of Recommendation: CB).”



Effective interprofessional communication and collaboration across care transitions for patients with PAH requires several elements to ensure health provider engagement: clear identification of the multidisciplinary teams and roles, implementation of evidence-based recognized PAH practice guidelines, use of a care hub to coordinate activities, connection of patients and families/caregivers through education and counseling activities, and open and timely communication between healthcare providers, patients, and families/caregivers (Table 5).

Table 5. Essential PAH Care Transitions Intervention: Healthcare Provider Engagement

Clearly identified patient’s primary care team

• Personal physician – each patient has an ongoing relationship with a primary care team trained to provide first contact, continuous, and comprehensive care (Patient-Centered Medical Home Model)

• Enhanced access to services and provision of follow-up appointments without long wait times

• Refer PAH patients to expert PAH care centers as appropriate

• Communication of a change in care site to the patient’s expert PAH care center

• Ability and willingness to work with accredited PAH specialty sites and appropriate other regional PAH care sites to perform community care (including hospital and care continuum as appropriate) for PAH patients. This includes:

» Notifying PAH specialty sites of changes in condition » Regularly communicating with specialty PAH sites on patient status » Implementing changes in care plan as directed by PAH specialty sites » Referral back to the specialty care sites as needed

Clearly identified patient’s PAH expert care center team

• Elevate the profile of PAH to improve its recognition, diagnosis, and care


• Partner with the hospital care team and care continuum team as necessary to sustain quality care for PAH patients as they enter other sites of care during their course of disease, and experience decline in clinical status

Clearly identified patient’s hospital and care continuum team


• Ability and willingness to work with accredited PAH specialty sites and appropriate other regional PAH care sites in order to deliver quality care for PAH patients during the hospital stay. This includes:

» Notifying PAH specialty sites of changes in condition » Implementing changes in care plan as directed by PAH specialty sites » Referral back to the specialty care sites as needed, especially if on parenteral, inhaled, or oral prostanoid therapies » Communicating with specialty PAH sites on patient status as indicated

Use of recognized PAH practice guidelines (evidence-based guidelines)

• Reconciliation of the discharge or transition plan with national PAH guidelines and critical pathways

• Implementation of evidence-based PAH as well as other appropriate care tools and plans

Hub of case management activities

• Improve documentation around change in patient’s (or resident’s) condition

• Improve flow of information between hospital, care continuum, community primary care team, and PAH expert care center team on hospital and ER admissions

• Being a communication hub

• Reconcile pre- and post-hospitalization medication lists in concert with the PAH expert care center team as appropriate



Table 5. Essential PAH Care Transitions Intervention: Healthcare Provider Engagement (cont.)

Patient and family education and counseling activities

• Coaching patients on self-care management with attention to “red flags” in concert with the PAH expert care center team education efforts

• Giving, or facilitating, the patient and family/caregiver to receive a written discharge or transition plan and instructions at the time of discharge/transition

• Transmitting the discharge/transition plan and instructions to the PAH expert care team for review and feedback

Open and timely communication among healthcare providers, patients, and families

• Enhanced communication with other healthcare providers in the PAH continuum of care about change in a patient’s (or resident in some settings) status

• Close interaction between care coordinators, hospitalists, community primary care team, and PAH expert care center

• Care is coordinated and/or integrated by coordinating patient care in a team-based approach

Shared accountability across providers and care settings is also essential to facilitate effective interprofessional communication and collaboration to coordinate care for patients with PAH (Table 6). This involves clear and timely communication of the care plan across care transitions, ensuring continuity of care with the sending provider remaining responsible for the patient’s care until the receiving provider has acknowledged that he/she can effectively assume the care, and assuming responsibility for the outcomes of care transitions.

Table 6. Essential PAH Care Transitions Intervention: Shared Accountability Across Providers and Care Settings

Clear and timely communication of the patient’s plan of care to patient, receiving provider and between the PAH expert care center, primary care team, and all sites of care as the patient moves between sites of care

• Healthcare provider must communicate plan of care to patient and receiving provider before handoff is completed

• The sending provider must be available to the receiving provider for any questions and clarifications regarding the patient’s care after the handoff

• Notify the receiving entity of the patient diagnosis of PAH, that specialty care is involved, and the need to involve the PAH expert care center as appropriate

• Inform the receiving entity of the contact information for the patient’s treating PAH expert care center

Ensuring that a healthcare provider is responsible for the care of the patient at all times

• Sending healthcare provider must remain responsible for patient’s care until the receiving provider has acknowledged that he/she can effectively assume the care of the PAH patient

• The receiving provider has to acknowledge the receipt of transferred information in a timely manner, understand the plan of care for the patient, and be prepared to assume responsibility for patient’s care

Assuming responsibility for the outcomes of the care transition process by all relevant healthcare providers (the provider [or organization] sending the patient, the one receiving the patient, and those engaging the PAH expert center as appropriate)

• If the provider who has assumed care of the patient determines that the patient should go to another level of care than provided, the provider is responsible for communicating with the receiving provider before handoff and notifying the PAH treatment chain of care

• Be involved in the patient’s transition safety and outcomes report, utilizing quality indicators including PAH-associated indicators



Transition Planning

Due to the incurable and progressive nature of PAH, patients undergo multiple care transitions throughout the course of their disease. Anticipating these transitions and developing system-based processes to ensure consis-tent, quality care at transition points across care settings can improve the experience for patients with PAH, and, presumably, patient outcomes. For effective transition planning, interdisciplinary care team members should be clearly identified, patient and family/caregiver needs should be addressed, formal transition planning tools may be utilized, and a timely transition summary should be documented (Table 7).

Table 7. Essential PAH Care Transitions Intervention: Transition Planning

Clearly identify the interdisciplinary care team members (PCP, PAH Specialist, Consulting Clinicians, Nurse, Social Worker, Case Manager, Home Care Specialist, Allied Health Professionals and community staff, and Patient Caregiver) and coordinate the patient’s transition plan

• Use of a PAH specialty nurse, social worker, or case manager who conducts a comprehensive assessment of the patient and family caregiver’s clinical and nonclinical needs, including knowledge deficit, health literacy, financial, social, self-management skills, and mental health needs

• Conduct a grand rounds type case conference with the transitioning and receiving care teams to set the transition plan and coordinate the plan with the patient and family/caregiver. It is recommended that the patient and family/caregiver be included in the case conference.

• Post-transition, the care team needs to set a follow-up visit/call/electronic portal intervention to review care needs, health status, and coordination issues. Newly diagnosed PAH patients should be followed very closely in the first 3 months.

• Identify suppliers of medical equipment, oxygen, and specialty medications

• Communicate with the PAH specialty care center when transitioning sites of care

Management of the PAH patient’s and family’s/caregiver’s transition needs

• Enhanced assessment of physical activity and supervised rehabilitation

• Creation of a patient care plan that supports the tasks, and interventions being asked of the patient and family/caregiver in managing their PAH

• Encourage patients and their families to join patient support groups

• Psychosocial coaching and counseling support to coordinate the psychological, social, financial, emotional, and spiritual functioning of the patient and family

• Proactive advanced care planning with referral to specialist palliative care services when appropriate

Use formal transition planning tools (providers, patients, and families/caregivers)

• From the hospital BOOST or Project Red » BOOST is a national initiative to improve the care of patients transitioning from the hospital to home. Expert mentors

and peer support help hospitals improve system-level care transition processes. (www.hospitalmedicine.org/boost) » Project Red is an AHRQ initiative to improve hospital discharge processes via a Re-Engineered Discharge (RED) toolkit.

(www.ahrq.gov/professionals/systems/hospital/red/toolkit/index.html)

• PAH Guidelines – standard of care

• Collaborative team care plan through the use of an EHR from 1 level of care, setting, or provider to another

• NTOCC patient resource: “Guidelines for a Hospital Stay”

Timely and completed transition summary

• Completed transition summary inclusive of all transition care needs and recommendations by the transition team

• Preferably electronic and requiring bilateral communication of acceptance from the next level of care

• The transitioning care team should ensure the patient and family/caregiver have a written copy of the transition plan at the time of transition, that they understand the information and feel confident they can follow through with the self-management skills required



Medical Records and Information Transfer

With the complexity of PAH treatment and management, accurate and timely transfer of patient information is paramount. Bi-directional communication pathways should be clearly defined and implemented, formal commu-nication tools such as computerized programs or apps may be utilized, and resources to facilitate efficient transfer of information should be identified (Table 8).

Medication Reconciliation and Drug Interaction Prevention

The risk for medication errors increases at care transition points, including hospital admission, transfer, and dis-charge, and the consequences can be serious. In fact, it has been reported that inadequate communication of medical information during transitions has been responsible for half of all medication errors.51 Patients with high numbers of drugs at pre-admission and those with multiple comorbidities, both common in patients with PAH, are at high risk.52 Medication reconciliation, defined as “the process of identifying the most accurate list of medications that the patient is taking, including name, dosage, frequency, and route, by comparing the medical record to an external list of medications obtained from a patient, hospital, or other provider,” can reduce medication discrepan-cies if implemented effectively.53 The Joint Commission’s National Patient Safety Goal #3, “Use Medicines Safely,” highlights 5 key points for effective medication reconciliation:

• Record and transfer accurate information about a patient’s medications

• Determine what medicines the patient is taking

• Compare those medicines to new medicines given to the patient

• Ensure the patient knows which medicines to take at home

• Educate the patient on the importance of bringing an up-to-date medication list every time the patient visits a doctor or ER

Table 8. Essential PAH Care Transitions Intervention: Medical Records and Information Transfer

Implementation of clearly defined communication models

• Use of multidisciplinary care teams and case conferences including the patient and family

• Bi-directional communication which requires not only sending the information but acknowledgment from the receiving care team they got the information, understand the information, and ability to continue to provide continuity of the transition plan and care plan

• Clear communication models that recognize the need for using appropriate “health literacy” with the patient and family

Use of formal communication tools

• Use of personal health records/portals

• Implementation of standardized PAH communication tools within an organization’s EHR or web-based management system plus a defined process for sharing information when health information technology (HIT) is not available

• Assess the appropriateness of mobile-apps for patients and families in support of medication management and follow-up care options

Clearly defined providers, care centers, and community resources to facilitate timely transfer of critical information

• Follow-up in the first 3 months of a PAH diagnosis is critical and needs to be clearly defined with the multidisciplinary care team, patient, and family/caregiver prior to transition

• Appropriate transition to a PAH care center when applicable including advance-care planning information and previous disease-targeted therapies

• The ability to conduct real-time patient-centered/family-centered “hand-over” communication facilitates information sharing



WHO has included “Assuring Medication Accuracy at Transitions of Care: Medication Reconciliation” as a core element in its “High 5s” patient safety collaborative project.54 Based on the tenets of this program, the following algorithm describes recommended practices for medication reconciliation in individuals with PAH (Figure 1).

Successful medication reconciliation begins with obtaining the best possible medication history (BPMH).54,55 Obtaining an accurate and up-to-date patient medication list upon admission is essential to ensuring patient safety throughout the continuum of care. This is achieved by using a systematic process that involves a structured patient interview along with verification via medication vials/list, government or other payer databases, health records from the provider/pharmacy, and/or other information from the specialty pharmacy, PH specialist, or provider. It is also critical to actively involve patients and their caregiver(s) in the process. Many patient tools are available to aid patients in maintaining accurate medication lists, including medication list templates and apps, web-based patient accessible medical records, self-serve medication history collection kiosks, healthcare provider programs (eg, community pharmacy-based medication review programs [Refer to Appendix II]).17 In addition, to be successful, interprofessional collaboration is required and the multidisciplinary

Figure 1. Medication Reconciliation Process in Individuals with PAH54,55

Table 9. Essential PAH Care Transitions Intervention: Medication Management

Assessment of patient’s medications intake

• Medication review including over-the-counter medications, herbals, vitamins, allergies, and drug interactions

• Identify medication-related problems

• Assess adherence and access to medications, particularly specialty pharmacy medications

• Assess ability to administer and access to resources to administer parenteral medications

Patient and family education and counseling about medications

• Teach-back method to establish understanding of medication plan

• Explain what medication to take, emphasizing any changes in the regimen, and rationale for changes

• Review each medication’s purpose, how to take or administer each medication correctly, and important side effects to watch for

• Discuss special resource needs based on medications prescribed

Development and implementation of a plan for medication management as part of the patient’s overall plan of care

• Provide medication reconciliation including pre- and post-hospitalization medication list

• Distribute medication reconciliation pre- and post-admission lists to all sites of care utilized beyond the patient’s usual community residence (ie, nursing facility, inpatient rehabilitation facility, long-term acute care hospital, home health, assisted living facility, etc.)

• Discuss processes for accessing and maintaining supply of specialty pharmacy medications

• Confirm the medication plan and follow-up care plan including access to home-based care and necessary equipment for medication administration

• Consider post-hospitalization or post-facility follow-up phone call or visit in home for continuity of care

• Interaction between PAH specialty care center and community care providers regarding PAH medications with any change in clinical status or medications



team members should be aware of their roles and responsibilities and be trained to take and reconcile a BPMH. The final list should then be reviewed against proposed medication orders at admission and any discrepancies corrected. During inpatient care, medication reconciliation should be performed again anytime medications are added, removed, or changed, and any changes should be discussed with the patient. Upon discharge, the best possible medication discharge plan (BPMDP) should be developed, reconciled, and communicated to the patient, specialty pharmacy, and provider/PH specialist to ensure an effective transition (Table 9).54,55

Special Considerations for Patients with PAH and Comorbid Conditions

In some patients, PAH is associated with underlying conditions, such as connective tissue (eg, systemic sclerosis) or car-diovascular disease.6 In the REVEAL Registry, hypertension, depression, diabetes, obesity, chronic obstructive pulmonary disease (COPD), sleep apnea, and thyroid disease were the most common comorbidities of PAH patients at time of enroll-ment.56 PAH patients with comorbidities may be particularly vulnerable during care transitions. An analysis of the REVEAL Registry data indicated that PAH patients with hypertension, obesity, diabetes, and COPD demonstrated worse functional parameters than other PAH patients. PAH patients with diabetes and COPD also were at higher risk for death.56 Other stud-ies demonstrated that PAH patients with congenital heart disease may be more susceptible to anesthesia, dehydration, lung infections, and high altitudes.36 It is important that this type of individualized patient information be communicated clearly during transitions to a new care setting. Furthermore, treatment is often more complex, due to increased intricacies of medication management with multiple conditions. For example, some front-line therapies for PAH may be contraindi-cated for certain patients, such as those with Eisenmenger syndrome or portopulmonary hypertension who should not take CCBs.36 Care should be taken when managing PAH patients with heart disease as both PDE-5 inhibitors and prostacylins may interact with nitrates, nitric oxide donors, antihypertensives, and other vasodilators. Due to the association of cirrhotic liver disease with portal hypertension, PAH patients with this condition should avoid hepatotoxic medications, such as the

Table 10. Essential PAH Care Transitions Intervention: Follow-Up Care

PAH patients and families require timely access to key healthcare providers after an episode of care as required by the patient’s condition and needs

• Patients and families need confirmation of their care team members confirming their PCP, PAH specialist, nurse or social work case manager, home health nurse, and other interprofessional staff

• Community staff and resources need to be defined and roles between the clinical team and community resources documented on the patient care plan

• A follow-up appointment after a hospital transition should be made prior to leaving the hospital, reinforcing the need for close follow-up for newly diagnosed PAH patients

• Review with the patient and family the follow-up care plan and need for adherence to the plan

• The accepting transition provider may use the 30-day Transitional Payment Codes seeing the patient within 30 days after a hospital transition when appropriate

• Patient and family should have access to a 24x7 Healthcare Services Access Line

Communication with patients and/or families and other healthcare providers post-transition from an episode of care

• A PAH nurse specialist to call patients and families within 24–72 hours after transition from the hospital to assess any post-transi-tion care needs including medication therapies

• Additional call in 2–3 days to reinforce the transition and care plan and resolve any miss-communication or care concerns

• Schedule a home visit from a nurse or social work case manager if appropriate to review medication therapies and management, exercise training, social well-being, and mental health

• Re-assessment of the patient’s care plan and schedule regular contact times with patient and family

• Ensure patients and families understand how to detect subtle changes in medical, functional, behavioral, and psychosocial prob-lems and know whom to contact

• Possible referral to the a PAH care center for assessment and treatment plan

• Frequent communication with the PAH care team members either telephonically, EHRs, patient portals, or face-to-face

• Coordinating provider may use the Chronic Care Management codes for ongoing monitoring and care coordination with their PAH patients



endothelin receptor agonist bosentan.36 In addition, the presence of PAH may limit candidacy for liver transplantation.36 These special considerations highlight the increased importance of complete and accurate medication lists and effective care coordination with the multidisciplinary team to ensure safe transitions for patients with PAH and comorbidities.

Support and Follow-Up Care

The complexity of PAH and its treatment and inevitable functional status changes necessitate comprehensive support. Follow-up should be conducted promptly to ensure the care plan is carried out appropriately and to prevent re-hospital-izations (Table 10). Patients also need to know when and how to contact key healthcare providers post-transition. Patients should understand how to access help if they run out of medication or if there is a pump malfunction.

IMPLEMENTATION OF A CARE TRANSITION PROGRAM

A Care Transition Pathway for PAH

Despite life-prolonging advances in medical therapy, PAH remains a serious, progressive, and incurable disease. In addition, the disease process and therapeutic management are both highly complex. Patients with PAH go through many transitions, often including multiple hospitalizations with multiple providers managing different aspects of care, throughout the course of their disease. Established care transition program recommendations can inform establishment of processes for PAH designed to promote safe transitions and reduce 30-day hospital readmissions for patients with PAH.57

Care settings should establish formal processes for management of care transitions (Figure 2). The first step is establishing a system for recognizing, assessing, and communicating a status change. It is important to provide education to patients and caregivers on how to recognize and assess symptoms and when/how to communicate the status change to the appropriate member of the care team. A formal process should also be established for notifying the patient’s medical point of contact (most often the PCP) of the anticipated care transition. The interprofessional team should then work with the patient and family/caregiver to develop a patient-centered care transition plan weighing the benefits and risks of the transition and addressing special considerations, such as medication management including administration of intravenous/subcutaneous, oral, or inhaled prostacyclins and oxygen management.

The care setting should then communicate with the receiving care setting and transfer essential patient information, including a “course-of-treatment summary”, so that it is received prior to patient arrival. Although shared EHR transfer would be ideal, computerized systems are typically not compatible between care settings, therefore, formal processes should be established to determine the best and most efficient method to transfer up-to-date, accurate, and essential patient health information to a variety of external care settings, including hospitals, PCPs, and PH care centers.58 Verbal

Figure 2. A PAH Care Transition Pathway



communication and contact information for the sending provider should be included to supplement the written health information. The receiving care setting should communicate back to the sending care setting confirming the arrival of the patient and any planned changes in care as appropriate.

The patient’s home should also be considered a care setting and similar care transition processes should be followed. When a patient’s status supports transition back home, the existing care setting team should ensure that the patient and family/caregiver understand the care plan, are connected with the primary care team, is equipped with the necessary self-management skills, and know how to recognize potential issues that necessitate a call to the provider or other care team contact. In addition, care settings should verify that patients and families/caregivers understand the next step in care: what it is, where it will occur, and why it is necessary. If home healthcare services will be utilized, care settings should prepare, make arrangements, and ensure all required paperwork is completed in advance. Clear communica-tion of medication plans both verbally and in writing is essential to facilitate complete understanding and appropriate preparation by the home team.

In other cases, a patient may need additional support and transfer to a SNF may be considered. However, this presents a significant challenge for patients with PAH because SNFs are not equipped and should not attempt to handle com-plex and high-risk prostanoid therapies. This leaves patients with advanced disease in a tough dilemma – facing the reality that they cannot have both the recommended treatment plan and a SNF as a living option. Very clear, detailed, and frequent conversations about the risks and benefits of these options need to begin early with the entire care team. If patients want the medications, efforts to find care providers with the appropriate expertise should be prioritized. If patients prefer the living arrangements of a SNF, they may find forgoing specific treatments to be an acceptable option for them. Any transfer should follow the steps outlined above with interprofessional development of a care tran-sition plan, clear communication, and transfer of essential patient information. Care settings should have established protocols for transfer that address the unique requirements of each care setting.

Emergency situations present additional challenges in care transitions. For these cases, policies should be in place to facilitate timely and efficient transfer of essential information, including acceptance of verbal communication followed by written documentation. Standardization of transfer forms and use of medical information bracelets may also assist in timely transfer of information in emergency situations.

Advance Care Planning

Table 11. Advance Care Planning Discussions57

• Medical Power of Attorney – ask the patient to identify a medical power of attorney to speak for the patient and make care decisions if the patient is unable to speak for him/herself

• End-of-Life Care – discuss the patient’s wishes for end-of-life care, including use of treatments/methods to extend life and transfers to new care settings; include specific considerations for patients with PAH such as poor outcomes with cardiopulmonary resuscitation; discuss all available options, including palliative care and hospice

• Patient Goals – ask the patient about personal goals – eg, prolonged life, independence, or comfort – and preferred place of care at end-of-life

• Accurate, Unbiased Information – have open, honest discussions regarding condition, risks, and benefits of treatment, likelihood of treatment success, and alternative options

• Advance Care Directives – Goals and wishes may change over time, therefore revisit the advance care directives with the patient frequently



PAH is a progressive and fatal disease and advance care planning discussions should be initiated with patients and families/caregivers early on (Table 11). Ideally, these discussions should evolve over time, being revisited at the begin-ning of each level of treatment. It is important to have the patient’s wishes documented before the patient approaches end-of-life, especially regarding late-stage therapies and use of aggressive treatments to prolong life. In support of shared decision-making and fully informed consent, patients considering late stage therapies should be informed prior to treatment of the challenges they will likely need to navigate and the impact of opting out of treatment or starting and later stopping these medications. Aggressive treatment should be discussed with patients within the specific context of their disease since some treatments (eg, cardiopulmonary resuscitation) may result in poor outcomes in patients with PAH.36,59 A survey of caregivers of PAH patients who recently died found that most of the patients died due to their PAH (90%) and were often in the inpatient hospital setting (67%).60 Many caregivers reported that they were not aware of pal-liative care and hospice service options.60 Physician-reported barriers to referrals to palliative care for patients with PAH include lack of approval by the patient or family/caregiver and concern that it represents “giving up hope.”61 However, the benefits and risks of these options should be discussed and key questions should be identified. For example, will hospice approve continuous home infusion for PAH patients? If not, it is important to ensure that patients understand that they may have to decide between the benefits of certain types of care (eg, hospice) and continuing their therapy. Although both providers and patients/families/caregivers may be hesitant to initiate and engage in these advance plan-ning discussions, being upfront about the progressive and fatal nature of this disease, informing the patient about all

*Discharges from an inpatient facility to home/self-care or any other site of care. **Emergency department discharges to ambulatory care (home/self-care) or home health care. AMA = American Medical Association; CMS = Centers for Medicare and Medicaid Services; NCQA = National Committee for Quality Assurance; PCPI = Physician Consortium for Performance Improvement.

Table 12. National Quality Forum Endorsed Care Coordination Measures66

Measure Description

0097 Medication reconciliation (NCQA)

0171 Acute care hospitalization (risk-adjusted; CMS)

0173 Emergency department use without hospitalization (CMS)

0326 Advance care plan (NCQA)

0494 Medical home system survey (NCQA)

0526 Timely initiation of care (CMS)

0553 Care for older adults – medication review (NCQA)

0554 Medication reconciliation post-discharge (NCQA)

0646 Reconciled medication list received by discharged patients* (AMA-PCPI)

0647 Transition record with specified elements received by discharged patients* (AMA-PCPI)

0648 Timely transmission of transition record* (AMA-PCPI)

0649 Transition record with specified elements received by discharged patients** (AMA-PCPI)



available options, dispelling misconceptions, listening to the patient’s fears and concerns, and documenting the patient’s wishes (including preferred place of care at end-of-life) ahead of time will ease the burden later. The 2015 ESC/ERS guide-lines endorse proactive advance care planning with referral to specialist palliative care services as appropriate for patients with PAH.36

Quality Measures and Assessment of Care Transitions Management

Finally, care setting performance in managing care transitions should be assessed. This is an increasing area of focus with the enactment of the Patient Protection and Affordable Care Act (PPACA) and the development of the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) Care Transition Measure that measures patients’ care transition experiences following an inpatient hospital stay, including how well patients understood the type of care they would need after discharge.62-64

In 2008, the NTOCC Measures Work Group identified several considerations for care transition measures, including:65

• At every patient visit: document the patient’s “hub of care” and permission to share information with other providers/care settings

• Ensure procedures are in place to confirm and document that essential information (eg, medication list) has been sent to the intended receiving provider/care setting

• Ensure procedures are in place to confirm and document that essential information has been received by the intended provider/care setting

• Document and review care coordination activities facilitated by the “care coordination hub” are appropriate and necessary

• In 2012, the NQF endorsed 12 quality measures to assess care coordination and transitions of care that can be utilized by care settings to evaluate their performance (Table 12)66

SUMMARYDespite significant therapeutic advances with new oral therapies and shifting paradigms demonstrating improved outcomes with upfront combination therapy, PAH remains a progressive, incurable disease. Patients with PAH undergo multiple transitions throughout the course of their disease and care settings must anticipate and plan for these transitions by implementing system-based care transition pathways to facilitate safer transitions and fewer re-hospitalizations. PAH is relatively rare and treatment/management is complex, therefore it is essential to follow evidence-based guidelines, consider referral to an expert PH care center whenever possible, secure care setting commitment, and engage the multidisciplinary interprofessional team along with the patients and their families/caregivers in the development and execution of a patient-centered care plan. At transition points, timely bi-directional communication and information transfer ensures that accurate, essential, and complete patient information is transferred successfully.

Transitions to the patient’s home, SNF, or palliative care/hospice have special considerations. Providers must ensure that patients and families/caregivers understand and are equipped to carry out the care plan at home, including management of complex PAH therapies. For example, patients with advanced disease may have to make a decision between the recommended medication plan and a SNF as a living option. Following care transitions, healthcare providers should follow-up promptly to verify successful transition. In addition, advance planning discussions should be conducted early on with PAH patients and their families/caregivers to identify a medical power of attorney and document the patient’s wishes regarding end-of-life care. Finally, care settings should establish quality measures and assess management of care transitions on an ongoing basis.

This clinical white paper describes pathways for transitions of patients with PAH across various care settings with the underlying goal of ensuring patient safety and reducing re-hospitalizations, thereby improving patient outcomes and satisfaction with care.



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13. Lacey M, Buzinec P, Hunsche E. Pulmonary hypertension-related rehospitalization among Medicare Advantage or commercially insured patients with PAH in the US. Academy of Managed Care Pharmacy Nexus Meeting; October 15-18, 2013; San Antonio, TX.

14. Kingman MS, Chin K. Safety recommendations for administering intravenous prostacyclins in the hospital. Crit Care Nurse. 2013;33(5):32-39.

15. Bartlett M. Meeting the challenge of hospitalized PAH patients receiving IV prostacyclins. Adv Pulmon Hyperten. 2015;13(4).

16. Kingman MS, Tankersley MA, Lombardi S, et al. Prostacyclin administration errors in PAH patients admitted to hospitals in the US: a national survey. J Heart Lung Transplant. 2010;29(8):841-846.

17. World Health Organization (WHO). The High 5s Project: Implementation Guide. Assuring Medication Accuracy at Transitions of Care: Medication Reconciliation; 2007. Retrieved from www.who.int/patientsafety/implementation/solutions/high5s/h5s-guide.pdf. Accessed 6/8/16.

18. Coleman EA. Falliing through the cracks: challenges and opportunities for improving transitional care for persons with complex care needs. J Am Geriatr Soc. 2003;52(5):855-856.

19. Coleman EA, Berenson RA. Lost in translation: challenges and opportunities for improving the quality of transitional care. Ann Intern Med. 2004;141(7):533-536.

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21. Agency for Healthcare Research and Quality (AHRQ). Prevention and Chronic Care: Care Coordination; 2015. Retrieved from www.ahrq.gov/professionals/prevention-chronic-care/improve/coordination/index.html. Accessed 6/8/16.

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23. Jack BW, Chetty VK, Anthony D, et al. A reengineered hospital discharge program to decrease rehospitalization: a randomized trial. Ann Intern Med. 2009;150(3):178-187.

24. Coleman EA, Parry C, Chalmers S, et al. The care transitions intervention: results of a randomized controlled trial. Arch Intern Med. 2006;166(17):1822-1828.

25. Naylor MD, Brooten DA, Campbell RL, et al. Transitional care of older adults hospitalized with heart failure: a randomized, controlled trial. J Am Geriatr Soc. 2004;52(5):675-684.

26. Snow V, Beck D, Budnitz T. Transitions of care consensus policy statement. J Gen Intern Med. 2009;24(8):971-976.

27. Sitbon O, Humbert M, Jais X, et al. Long-term response to calcium channel blockers in idiopathic PAH. Circulation. 2005;111(23):3105-3111.

28. McGoon MD, Kane GC. Pulmonary hypertension: diagnosis and management. Mayo Clin Proc. 2009;84(2):191-207.

29. Bazan IS, Fares WH. Pulmonary hypertension: diagnostic and therapeutic challenges. Ther Clin Risk Manag. 2015;11:1221-1233.

30. Ghofrani HA, Galie N, Grimminger F, et al. Riociguat for the treatment of PAH. N Engl J Med. 2013;369(4):330-340.

31. Rubin L, Galie N, Grimminger F, et al. Riociguat for the treatment of PAH: 2-year results from the PATENT-2 long-term extension. Eur Respir J. 2014;44(Suppl 58):P1803.

32. Rubin L, Galie N, Grimminger F, et al. Riociguat for the treatment of PAH: a long-term extension study (PATENT-2). Eur Respir J. 2015;45(5):1303-1313.

33. Galie N, Corris PA, Frost A, et al. Updated treatment algorithm of PAH. J Am Coll Cardiol. 2013;62(25 Suppl):D60-D72.

34. Barst RJ, Rubin LJ, Long WA, et al. A comparison of continuous intravenous epoprostenol (prostacyclin) with conventional therapy for primary pulmonary hypertension. N Engl J Med. 1996;334(5):296-301.

35. Sitbon O, Channick R, Chin KM, et al. Selexipag for the treatment of PAH. N Engl J Med. 2015;373(26):2522-2533.

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37. Galie N, Barbera JA, Frost AE, et al. Initial use of ambrisentan plus tadalafil in PAH. N Engl J Med. 2015;373(9):834-844.

38. Parrish MM, O’Malley K, Adams RI, et al. Implementation of the care transitions intervention: sustainability and lessons learned. Prof Case Manag. 2009;14(6):282-293.

References



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43. Coleman EA, Roman SP, Hall KA, et al. Enhancing the care transitions intervention protocol to better address the needs of family caregivers. J Healthc Qual. 2015;37(1):2-11.

44. Bailey SC, Fang G, Annis IE, et al. Health literacy and 30-day hospital readmission after acute myocardial infarction. BMJ Open. 2015;5(6):e006975.

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47. Howard LS, Ferrari P, Mehta S. Physicians’ and patients’ expectations of therapies for PAH: where do they meet? Eur Resp Rev. 2014;23(134):458-468.

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51. Greenwald JL, Halasyamani LK, Greene J, et al. Making inpatient medication reconciliation patient centered, clinically relevant, and implementable: a consensus statement on key principles and necessary first steps. Jt Comm J Qual Patient Saf. 2010;36(11):504-513.

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53. Centers for Medicare and Medicaid Services (CMS). Eligible Professional Meaningful Use Menu Set Measures. Measure 6 of 9. Medication Reconciliation; 2014. Retrieved from www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/downloads/7_Medication_Reconciliation.pdf. Accessed 6/8/16.

54. World Health Organization (WHO). High 5s Project Standard Operating Protocol. Assuring Medication Accuracy at Transitions of Care: Medication Reconciliation; 2016. Retrieved from www.who.int/patientsafety/implementation/solutions/high5s/h5s-sop.pdf. Accessed 6/8/16.

55. Kwan JL, Lo L, Sampson M, et al. Medication reconciliation during transitions of care as a patient safety strategy: a systematic review. Ann Intern Med. 2013;158(5 Pt 2):397-403.

56. Poms AD, Turner M, Farber HW, et al. Comorbid conditions and outcomes in patients with PAH: a REVEAL registry analysis. Chest. 2013;144(1):169-176.

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59. Gin-Sing W. PAH: a multidisciplinary approach to care. Nurs Stand. 2010;24(38):40-47.

60. Grinnan DC, Swetz KM, Pinson J, et al. The end-of-life experience for a cohort of patients with PAH. J Palliat Med. 2012;15(10):1065-1070.

61. Fenstad ER, Shanafelt TD, Sloan JA, et al. Physician attitudes toward palliative care for patients with PAH: results of a cross-sectional survey. Pulm Circ. 2014;4(3):504-510.

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RESOURCESAppendix I. Additional Resources

Advance Directive and End-of-Life Planning Tools:

Aging with Dignity: 5 Wishes: www.agingwithdignity.org

Physician Orders for Life-Sustaining Treatment Paradigm (POLST): www.polst.org

Pulmonary Arterial Hypertension Information:

American Heart Association: www.heart.org/HEARTORG/Conditions/HighBloodPressure/ AboutHighBloodPressure/ What-is-Pulmonary-Hypertension_UCM_301792_Article.jsp

American Lung Association: www.ala1-old.pub30.convio.net/lung-disease/pulmonary-arterial-hypertension

Centers for Disease Control and Prevention: www.cdc.gov/dhdsp/data_statistics/fact_sheets/fs_pulmonary_hypertension.htm

National Heart, Lung, and Blood Institute: www.nhlbi.nih.gov/health/health-topics/topics/pah

Pulmonary Hypertension Association: www.phassociation.org

Pulmonary Hypertension Specialists and Accredited PH Care Centers:

Pulmonary Hypertension Association List of Accredited PH Care Centers: www.phassociation.org/PHCareCenters/MedicalProfessionals/AccreditedCenters

Pulmonary Hypertension Association Find a Doctor Directory: www.phassociation.org/Patients/FindADoctor

PHCentral List of Specialists and Treatment Centers: www.phcentral.org/medical/centers

Patient Support Groups:

Pulmonary Hypertension Association Patient and Caregiver Support Information: www.phassociation.org/Community

Pulmonary Hypertension Association Online Support Group (myPHA): www.myphassociation.org/home

PHCentral Patient Support: www.phcentral.org

Transitions of Care Resources:

National Transitions of Care Coalition: www.ntocc.org

The Visiting Nurse Associations of America Blueprint for Excellence: www.vnaablueprint.org/main-menu.html

The Visiting Nurse Associations of America Guide for Artful Conversations: www.vnaablueprint.org/hospice-palliative/artful-conversations/artful-conversation.html

BE SURE YOU KNOW THESE THINGS:1. Why am I meeting with a healthcare provider today? ___________________________________

2. What medical conditions do I have? __________________________________________________

__________________________________________________________________________________

3. What other healthcare providers have I seen since my last visit? __________________________

4. Have my medications changed since my last visit? ______________________________________

5. Do I have a list of all the medicines I need to take, including all on the following list? Important: Tell the healthcare provider any allergies or sensitivities you have to any medicine.

___ Prescription medicine (can buy only with a prescription)

___ Over-the-counter medicine (can buy without a prescription)

___ Vitamins, herbs, or supplements I take (such as St. John’s Wort)

___ Any new prescriptions I received during this visit

___ Written directions on how to take all my medicines

___ Major side effects of these medicines

6. Besides taking my medicines, what else do I need to do?

___ Get blood tests or other medical tests?

___ Get extra help or equipment at home?

___ Avoid caffeine, alcohol, tobacco, or other drugs?

___ Eat or avoid eating certain foods?

___ Change a bandage?

___ Exercise?

7. Name of PH Expert Care Center: ________________ Phone Number: ___________________

Contact Person at the PH Care Center: _____________________________________________

8. When were you last seen by your PH Care Center: ___________________________________

___ Were there changes in your oxygen or medications at that visit: Yes___ No___

___ If there were changes, what were they: _________________________________________

9. Name of Pulmonologist (Lung Specialist): ____________________ Phone: ________________

10. Name of Local Cardiologist (Heart Specialist): _________________ Phone: ______________

11. Oxygen Company You Use: _______________________ Phone: ________________________

12. Which doctor or other healthcare provider will I see next and why? ____________________

________________________________ How soon? ____________________________________

How do I make an appointment?__________________________________________________

13. Has my doctor sent a copy of my discharge plan or other information about my health (including all my medicine and other treatments) to my next healthcare provider or facility? MAY I HAVE A COPY OF THAT INFORMATION TODAY?

14. Do I need a referral for other healthcare providers, tests, or facilities?

When should I expect the results from my tests? _______________________________________

15. Who should I call before my next appointment if I have questions or problems managing my care or dealing with my PAH? _________________________________________________

Take this with you each time you meet with a healthcare provider (such as a doctor, nurse, pharmacist, or social worker); visit an emergency room, hospital, nursing center, or other healthcare facility; or receive care in your home. You have rights to your personal health information. Using this guide can help you keep track of your health information and may prevent other health problems.

Adapted from NTOCC’s MY Health Care @ NTOCC.org.

Being sick can affect all areas of your life. If you have questions or concerns about any of the following, check the box and talk about them with a healthcare provider.

NAME:_________________________ PHONE: _________________

Visit With:__________________

Today’s Date:_______________

ON THE FOLLOWING PAGE IS SPACE TO WRITE DOWN YOUR MEDICINES, QUESTIONS, AND CONCERNS TO TAKE WITH YOU TO YOUR NEXT DOCTOR’S VISIT

A guide for you or your caregiver to be active in either your own health care or caring for someone else.

� Advance care planning � Alcohol, drug, or tobacco use � Caregiving concerns � Changes in behavior, memory,

or thinking � Cultural/religious customs

affecting health care � Financial or insurance � Home safety � Medical equipment needs;

help with walking, bathing, eating, or dressing

� Relationships/intimacy concerns

� Taking medicines � Transportation and driving

issues � Understanding my illness or

conditions � Oxygen use or delivery � Increasing tiredness and

shortness of breath

!

Appendix II: Taking Care of My PAH Health Care

WHEN I GET UP, I TAKE:

IN THE AFTERNOON, I TAKE:

IN THE EVENING, I TAKE:

BEFORE I GO TO BED, I TAKE:

OTHER MEDICINES THAT I DO NOT USE EVERYDAY:

Drug name -brand name

or generic & DOSE

This looks like?

color, shape

How many?

How I take it

I started taking this on: (date)

I stopped taking this on: (date)

Why I take it

Who told me

to take it(name)

Example:Lisinopril 10 mg

Round yellow pill

1By mouth with

breakfastJune 3, 2008

Keep takingHigh blood pressure

Dr. Smith

OXYGEN: Is oxygen (O2) prescribed: Yes____ No____• Continuous _____ or As Needed ______• How many liters/minute ________ or % O2 ______ is used• Oximetry results (if known): on room air______ or on O2 _______

QUESTIONS I WANT TO TALK ABOUT WITH MY HEALTHCARE PROVIDER AT MY NEXT VISIT:

Adapted from NTOCC’s MY Health Care @ NTOCC.org.



Appendix III. 7 Essential PAH Care Transition Interventions

Essential Intervention Categories

DescriptionExamples of Transition

Care Intervention

1. Medication Management

Ensuring the safe use of medications by patients with PAH and their family/caregiver

• Assessment of patient’s medication intake

• Patient and family/ caregiver education and counseling about medications


Assessment of patient’s medication intake

• Medication review including over-the-counter medications, herbals, vitamins, allergies, and drug interactions

• Identify medication-related problems

• Assess adherence and access to medications, particularly specialty pharmacy medications

• Assess ability to administer and access to resources to administer parenteral medications

Patient and family education and counseling about medications

• Teach-back method to establish understanding of medication plan

• Explain what medication to take, emphasizing any changes in the regimen, and rationale for changes

• Review each medication’s purpose, how to take or administer each medication correctly, and important side effects to watch for

• Discuss special resource needs based on medications prescribed


• Provide medication reconciliation including pre- and post-hospitalization medication list

• Distribute medication reconciliation pre- and post-admission lists to all sites of care utilized beyond the patient’s usual community residence (ie, nursing facility, inpatient rehabilitation facility, long-term acute care hospital, home health, assisted living facility, etc.)

• Discuss processes for accessing and maintaining supply of specialty pharmacy medications

• Confirm the medication plan and follow-up care plan including access to home-based care and necessary equipment for medication administration

• Consider post-hospitalization or post-facility follow-up phone call or visit in home for continuity of care

• Interaction between the PAH specialty care center and community care providers regarding PAH medications with any change in clinical status or medications



Appendix III. 7 Essential PAH Care Transition Interventions (cont.)



Care Intervention

2. Transition Planning

A formal process that facilitates the safe transition of PAH patients from one level of care to another, including home or from one practitioner to another

• Clearly identify the provider, post-acute, or care center to facilitate and coor-dinate the patient’s transition plan

• Ensure the multidis-ciplinary care team manages the patient and family caregiver’s transition needs

• Use of formal transi-tion planning tools

• Development and completion of a transition summary (discharge plan)

Clearly identify the interdisciplinary care team members (PCP, PAH Specialist, Consulting Clinicians, Nurse, Social Worker, Case Manager, Home Care Specialist, Allied Health Professionals and Community Staff, and Patient/Caregiver) and coordinate the patient’s transition plan

• Use of a PAH specialty nurse, social worker, or case manager who conducts a comprehensive assessment of the patient and family caregiver’s clinical and nonclinical needs, including knowl-edge deficit, health literacy, financial, social, self-management skills, and mental health needs

• Conduct a grand rounds type case conference with the transi-tioning and receiving care teams to set the transition plan and coordinate the plan with the patient and family caregiver. It is recommended that the patient and family be included in the case conference.

• Post-transition, the care team needs to set a follow-up visit/call/electronic portal intervention to review care needs, health status, and coordination issues. Newly diagnosed PAH patients should be followed very closely in the first 3 months.

• Identify suppliers of medical equipment, oxygen, and specialty medications

• Communicate with the PAH specialty care center when transi-tioning sites of care

Management of the PAH patient’s and family caregiver’s transition needs

• Enhanced assessment of physical activity and supervised reha-bilitation

• Creation of a patient care plan that supports the tasks, and interventions being asked of the patient and family caregiver in managing their PAH

• Encourage patients and their family members to join patient support groups to enhance the patient and families coping, confidence, and outlook

• Psychosocial coaching and counseling support to coordinate the psychological, social, financial, emotional, and spiritual function-ing of the patient and family

• Proactive advanced care-planning with referral to specialist palli-ative care services when appropriate

Use formal transition planning tools (providers, patients, and families/caregivers)

• From the hospital BOOST or Project Red » BOOST is a national initiative to improve the care of patients

transitioning from the hospital to home. Expert mentors and peer support help hospitals improve system-level care transition processes. (www.hospitalmedicine.org/boost)

» Project Red is an AHRQ initiative to improve hospital dis-charge processes via a Re-Engineered Discharge (RED) tool-kit (www.ahrq.gov/professionals/systems/hospital/red/tool-kit/index.html)






Care Intervention

2. Transition Planning (cont.)

• PAH Guidelines – standard of care

• Collaborative Team Care Plan through the use of an EHR from one level of care, setting, or provider to another

• NTOCC patient resource “Guideline for a Hospital Stay”

Timely and completed transition summary

• Completed transition summary inclusive of all transition care needs and recommendations by the transition team

• Preferably electronic and requiring bilateral communication of acceptance from the next level of care

• The transitioning care team should ensure the patient and family caregiver have a written copy of the transition plan at the time of transition, that they understand the information and feel confi-dent they are able to follow through with the self-management skills required

3. Patient and Family/Caregiver Engagement and

Education

PAH education and counseling of patients and families/caregivers to enhance their active participation in their own care, including informed decision-making

• Patients and fami-lies/caregivers are knowledgeable about their condition and plan of care

• Patient and family/caregiver-centered transition communi-cation

• Development of self-care management skills

Ensure patients and families/caregivers are knowledgeable about PAH and have a plan of care they can understand and implement

• Assess health literacy and gaps in the patient’s and family’s/caregiver’s knowledge of PAH, their understanding of how to be independent in managing their medication therapies and oxy-gen, and the need for close supervision during the first 3 months for newly diagnosed patients; recognize that health literacy may differ significantly between patients and caregivers

• Patient’s and family’s/caregiver’s understanding of “red flags” for PAH symptom escalation and who they need to contact for support

• Interaction with social workers, home health, and community staff providing coaching and counseling in support of coping and self-management

Patient and family-centered transition communication

• Use a multidisciplinary approach to patient and family communi-cation ensuring that the care team, patient, and family/caregiver are speaking the same language/information

• Health literacy cannot be stressed enough with PAH patients and families/caregivers

• Support dialogue on advance-care planning and the needs of the patient and family

• Providing real-time face-to-face discussions with the patients and families is key to eliminating miscommunication contrib-uting to medication errors, missed follow-up care, and hospital readmissions






Care Intervention

3. Patient and Family/Caregiver Engagement and Education (cont.)

Developing self-care management skills

• Assess patient’s and family’s/caregiver’s ability to manage their medication therapies, including infusions and oxygen

• Provide opportunity for appropriate patient teach-back and discussion of risk issues

• Develop a nutrition plan with the patient and family/caregiv-er assessing concerns related to culture, financial, and social burden

• Goal of asking and supporting patients and families/caregivers to take responsibility for monitoring their own healthcare needs on a day-to-day basis, maintaining an up-to-date medication list, and how and when to seek appropriate assistance when needed

4. Medical Records and Information

Transfer

Sharing of important information among the patient, family/caregiver, and healthcare providers in a timely and effective manner

• Implementation of clearly defined com-munication models

• Use of formal com-munication tools

• Clearly defined providers to facilitate timely transfer of information

Implementation of clearly defined communication models

• Use of multidisciplinary care teams and case conferences includ-ing the patient and family

• Bi-directional communication which requires not only sending the information but acknowledgment from the receiving care team they got the information, understand the information, and ability to continue to provide continuity of the transition plan and care plan

• Clear communication models that recognize the need for using appropriate “health literacy” with the patient and family

Use of formal communication tools

• Use of personal health records/portals

• Implementation of standardized PAH communication tools with-in an organization’s EHR or web-based management system plus a defined process for sharing information when health informa-tion technology (HIT) is not available

• Assess the appropriateness of mobile-apps for patients and families in support of medication management and follow-up care options

Clearly defined providers, care centers, and community resources to facilitate timely transfer of critical information

• Follow-up in the first 3 months of a PAH diagnosis is critical and needs to be clearly defined with the multidisciplinary care team, patient, and family/caregiver prior to transition

• Appropriate transition to a PAH care center when applicable including advance-care planning information and previous dis-ease-targeted therapies

• The ability to conduct real-time patient-centered/family-centered “hand-over” communication facilitates consistency of informa-tion sharing






Care Intervention

5. Follow-Up Care Facilitating the safe transition of PAH patients from one level of care to another through effective follow-up care interventions

• Patients and families need timely access to key healthcare providers after an episode of care as required by the pa-tient’s condition and needs

Facilitating the safe transition of PAH patients from one level of care to another through effective follow-up care interventions

PAH patients and families require timely access to key healthcare providers after an episode of care as required by the patient’s condition and needs

• Patients and families need confirmation of their care team members, confirming their PCP, PAH specialist, nurse or social work educator or case manager, home health nurse, and other interprofessional staff

• Community staff and resources need to be defined and the roles between the clinical team and community resources should be documented on the patient care plan

• A follow-up appointment after a hospital transition should be made prior to leaving the hospital, reinforcing the need for close follow-up for newly diagnosed PAH patients

• Review with the patient and family the follow-up care plan and need for adherence to the plan

• The accepting transition provider may use the 30-day Transition Payment Codes seeing the patient within 30 days after a hospital transition when appropriate

• Patients and families should have access to a 24x7 Healthcare Services Access Line

Communication with patients and/or families and other healthcare providers post-transition from an episode of care

• A PAH nurse specialist to call patients and families within 24–72 hours after transition from the hospital to assess any post-tran-sition care needs including medication therapies

• Additional call in 2–3 days to reinforce the transition and care plan and resolve any miscommunication or care concerns

• Schedule a home visit from a nurse or social work case manager if appropriate to review medication therapies and management, exercise training, social well-being, and mental health

• Re-assessment of the patient’s care plan and schedule regular contact times with patient and family

• Ensure patients and families understand how to detect subtle changes in medical, functional, behavioral, and psychosocial problems, and know whom to contact

• Referral to a PAH care center whenever possible for assessment and treatment plan

• Frequent communication with the PAH care team members either telephonically, EHRs, patient portals, or face-to-face

• Coordinating provider may use the Chronic Care Management codes for ongoing monitoring and care coordination with their PAH patients






Care Intervention

6. Healthcare Provider

Engagement

Demonstrating ownership, responsibility, and accountability for the care of the patient and family/caregiver at all times

• Clearly identified patient’s primary care team

• Clearly identified patient’s PAH expert care center team

• Clearly identified patient’s hospital and care continuum team

• Use of recognized evidence-based prac-tice guidelines

• Hub of case manage-ment activities

• Patient and family education and coun-seling activities

Clearly identified patient’s primary care team

• Personal physician – each patient has an ongoing relationship with a primary care team trained to provide first contact, contin-uous and comprehensive care (Patient-Centered Medical Home Model)

• Enhanced access to services and provision of follow-up appoint-ments without long wait times


• Communication of a change in care site to the patient’s expert PAH care center

• Ability and willingness to work with accredited PAH specialty sites and appropriate other regional PAH care sites to perform community care (including hospital and care continuum as ap-propriate) for PAH patients. This includes:

» Notifying PAH specialty sites of changes in condition » Regularly communicating with specialty PAH sites on patient

status » Implementing changes in care plan as directed by PAH specialty

sites » Referral back to the specialty care sites as needed

Clearly identified patient’s PAH expert care center team

• Elevate the profile of PAH to improve its recognition, diagnosis, and care


• Partner with the hospital care team and the care continuum team as necessary to sustain quality care for PAH patients as they enter other sites of care during their course of disease, and experience decline in clinical status

Clearly identified patient’s hospital and care continuum team


• Ability and willingness to work with accredited PAH specialty sites and appropriate other regional PAH care sites in order to deliver quality care for PAH patients during the hospital stay. This includes:

» Notifying PAH specialty sites of changes in condition » Implementing changes in care plan as directed by PAH spe-

cialty sites » Referral back to the specialty care sites as needed, especially

if on parenteral, inhaled, or oral prostanoid therapies » Communicating with specialty PAH sites on patient status

as indicated






Care Intervention

6. Healthcare Provider

Engagement (cont.)

Use of recognized PAH evidence-based practice guidelines

• Reconciliation of the Discharge or Transition Plan with national PAH guidelines and critical pathways

• Implementation of evidence-based PAH as well as other appro-priate care tools and plans

Hub of case management activities

• Improve documentation around change in patient’s (or resi-dent’s) condition

• Improve flow of information between hospital, care continuum, community primary care team, and PAH expert care center team on hospital and emergency room admissions

• Being a communication hub

• Reconcile pre-hospitalization and post-hospitalization medi-cation lists in concert with the PAH expert care center team as appropriate

Patient and family education and counseling activities

• Coaching patients on self-care management with attention to “red flags” in concert with the PAH expert care center team education efforts

• Giving, or facilitating, the patient and family/caregiver to receive a written Discharge or Transition Plan and instructions at the time of discharge/transition

• Transmitting the Discharge or Transition Plan and instructions to the PAH expert care team for review and feedback

Open and timely communication among healthcare providers, patients, and families

• Enhanced communication with other healthcare providers in the PAH continuum of care about change in a patient’s (or resident in some settings) status

• Close interaction between care coordinators, hospitalists, com-munity primary care team, and PAH expert care center

• Care is coordinated and/or integrated by coordinating patient care in a team-based approach






Care Intervention

7. Shared Accountability

Across Providers and Organizations

Enhancing the transition of care process through accountability for care of the patient by both the healthcare provider (or organization) transitioning and the one receiving the patient

• Clear and timely communication of the patient’s plan of care

• Ensuring that an engaged, appropriate healthcare provider is responsible for the care of the patient at all times

• Assuming respon-sibility for the outcomes of the care transition process by both the provider (or organization) send-ing, the one receiving the patient, and engaging the PAH expert care center as appropriate

Clear and timely communication of the patient’s plan of care to the patient, receiving provider and between the PAH expert care center, community primary care team, and all sites of care as the patient moves between sites of care

• Healthcare provider must communicate plan of care to the patient as well as the receiving provider before handoff is com-pleted

• The sending provider must be available to the receiving provider for any questions and clarifications regarding the patient’s care after the handoff

• Notify the receiving entity of the patient’s diagnosis of PAH, that specialty care is involved, and the need to involve the PAH expert care center as appropriate

• Inform the receiving entity of the contact information for the patient’s treating PAH expert care center

Ensuring that a healthcare provider is responsible for the care of the patient at all times

• Sending healthcare provider must remain responsible for pa-tient’s care until the receiving provider has acknowledged that he/she can effectively assume the care of the PAH patient

• The receiving provider has to acknowledge the receipt of trans-ferred information in a timely manner, understand the plan of care for the patient, and be prepared to assume responsibility for patient’s care

Assuming responsibility for the outcomes of the care transition process by all relevant healthcare providers (the provider [or organization] sending the patient, the one receiving the patient, and those engaging the PAH expert center as appropriate)

• If the provider who has assumed care of the patient determines that the patient should go to another level of care than that provided, the provider is responsible for communicating with the receiving provider before handoff and notifying the PAH treatment chain of care

• Be involved in the patient’s transition safety and outcomes report, utilizing quality indicators including PAH-associated indicators


Learning Objectives

� Describe key roles of interprofessional team members in carrying out effective transitions of care for patients with PAH

� Assess recently published, evidence-based PAH treatment guidelines for incorporation into care transition activities including medications and medication reconciliation, prevention of drug interactions, management of comorbidities, and patient education

� Implement safe and effective transitions of care strategies to improve treatment outcomes for patients with PAH

Instructions to obtain credit:

1. Complete the activity in its entirety.

2. Visit PRIME®’s Credit Center at www.primeinc.org/credit.

3. Enter program code 54PR161.

4. Upon completion of the learner assessment tools, you will be able to print your certificate.

Monograph Release Date: June 15, 2016 | June 14, 2017

Planner:Cheri Lattimer, RN, BSNExecutive DirectorNational Transitions of Care CoalitionWashington, DC

Planner:James E Lett, MD, CMDInternal Medicine PhysicianChief Medical OfficerVice President Medical AffairsAvar ConsultingRockville, MDDirector of the National BoardNational Transitions of Care CoalitionWashington, DC

Reviewer:Terence K Trow, MDAssociate Professor of MedicineDivision of Pulmonary and Critical Care MedicineDirector, Yale Pulmonary Vascular Disease ProgramYale University School of MedicineNew Haven, CT

There is no fee for this activity as it is sponsored by PRIME® through an independent educational grant from Gilead Sciences, Inc.

Accreditation StatementsPRIME Education, Inc. (PRIME®) is accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

Physician Credit Designation Statement PRIME® designates this enduring material for a maximum of 2.0 AMA PRA Category 1 Credit™. Physicians should claim only credit commensurate with the extent of their participation in the activity.

Physician Assistant Accreditation Statement AAPA accepts certificates of participation for educational activities certified for AMA PRA Category 1 Credit™ from organizations accredited by ACCME. Physician assistants may receive a maximum of 2.0 hours of Category I credit for completing this program.

Pharmacist Accreditation Statement This curriculum has been approved for 2.0 contact hours (0.2 CEUs) by PRIME®. PRIME® is accredited by the Accreditation Council for Pharmacy Education as a pro-vider of continuing pharmacy education. The Universal Activity Number for this program is 0255-0000-16-022-H01-P. This learning activity is Knowledge-based. Your CE credits will be electronically submitted to the NABP upon successful completion of the activity. Pharmacists with questions can contact NABP customer service ([email protected]).

Nurse Accreditation Statement PRIME® designates this activity for 2.0 contact hours.

Case Manager Accreditation Statement The Commission for Case Manager Certification designates this educational activity for 2.0 contact hours for certified case managers.

Documents

SAFER TRANSITIONS, FEWER RE-HOSPITALIZATIONS WITH …Safer Transitions, Fewer Re-Hospitalizations with PAH: An Interdisciplinary Guide Clinician-Level Barriers • Multiple clinicians