Vol. 45 No. 1 January 2013 Journal of Pain and Symptom Management 43

Original Article

An Examination of Adherence to PainMedication Plans in Older Cancer Patientsin Hospice CareSara Sanders, PhD, MSW, Keela A. Herr, PhD, RN, AGSF, FAAN, Perry G. Fine, MD,Catherine Fiala, MSN, RN, Xiongwen Tang, MS, PhD (C),and Chris Forcucci, BSN, RN, BASchool of Social Work (S.S.) and College of Nursing (K.A.H., C.Fi., X.T., C.Fo. ), University of Iowa,

Iowa City, Iowa; School of Medicine (P.G.F.) and Pain Research Center (P.G.F.), University of Utah,

Salt Lake City, Utah; and University of Iowa (X.T., C.Fo.), Iowa City, Iowa, USA

Abstract

Context. Timely and appropriate management of pain is essential to promote

comfort at the end of life.Objectives. To determine if pain-related factors and nonpharmacologic

interventions affect medication adherence in older cancer patients in community-based hospices.

Methods. The study involved cancer patients aged 55 years and older, newlyadmitted to one of the 13 community-based hospices in the midwestern U.S. Adescriptive design with patients or their proxies providing information during twotelephonic interviews and review of their hospice medical records were used.

Results. A total sample of 65 patients was obtained, with data directly from32 patients during Interview 1 (T1), 25 during Interview 2 (T2), and proxy reportsfor 33 (T1) and 30 (T2) patients. The overall mean pain medication adherencescores (maximum 9) for all patients were 8.43 (T1) and 8.38 (T2). For componentanalysis (three components; maximum of three points each), patients were theleast adherent with opioid orders at both time points (2.65). Patients were themost adherent to nonsteroidal anti-inflammatory/acetaminophen orders at T1

(2.91) and medications for neuropathic pain at T2 (2.89). Data provided statisticalevidence that patients with more hours of controlled pain in the past 24 hourswere more likely to have had better adherence, whereas patients with higher levelsof comfort over the last few days were more likely to have had worse adherence.

Conclusion. This study identified that pain medication adherence among olderadults with cancer receiving hospice care is high. However, hospices must be alertto the fact that even as patients become more comfortable, adherence mustcontinue to be emphasized to ensure that pain does not redevelop or exacerbate,if pain relief is a patient priority. J Pain Symptom Manage 2013;45:43e55.� 2013U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Address correspondence to: Keela A. Herr, PhD, RN,AGSF, FAAN, John A. Hartford Center of GeriatricNursing Excellence, College of Nursing, University

of Iowa, 306 CNB, 50 Newton Road, Iowa City, IA52242, USA. E-mail: keela-herr@uiowa.edu

Accepted for publication: January 19, 2012.

� 2013 U.S. Cancer Pain Relief Committee.Published by Elsevier Inc. All rights reserved.

0885-3924/$ - see front matterhttp://dx.doi.org/10.1016/j.jpainsymman.2012.01.007

44 Vol. 45 No. 1 January 2013Sanders et al.

Key Words

Elderly, cancer pain, adherence, opioid, analgesic, hospice, older adults

IntroductionPain is a common occurrence in many

advanced illnesses and adherence to anassessment-based pain management plan, con-sistent with a patient’s goals of care, is essentialto ensure comfort at all stages of the disease.Adherence is particularly important in thefinal or end stages of the disease, a period inwhich pain frequently increases as death ap-proaches and at a time when caregiver supportor control of the pain management plan maybe required.

The timely and appropriate management ofacute and chronic pain is a critical componentto promoting patients’ health, quality of life(QOL), and economic interest. During thepast decades, there have been great advancesin themanagement of pain, resulting in clinicalguidelines that encapsulate evidence-basedtreatment approaches and consensus-basedbest practices to provide practical recommenda-tions to guide care, for example, the AmericanPain Society/American Academy of Pain Medi-cine’s Clinical Guidelines for the Use of Chronic Opi-oid Therapy in Chronic Noncancer Pain1 and theAmerican Geriatrics Society’s Clinical PracticeGuideline, Pharmacological Management of Persis-tent Pain in Older Persons.2 These have beenwidely disseminated to assist in both the assess-ment and treatment of chronic and acutepain, as well as more educational initiatives,such as Principles of Effective Pain Management atthe End of Life, available through Medscape.These guidelines inform clinical practices andalso recommend the involvement of the patientand/or family in the planning and implementa-tion of the treatment plan.

Educating the patient and family has beenshown to be an important factor in adherence.3

Despite the availability of such resources, adher-ence to the prescribed medication regimenremains a significant problem in the manage-ment of pain.

Adherence can be defined as the extent towhich the recommendations and prescriptionsof a medical professional are followed by thepatient or, for some, the person serving in

the caregiving role.4 In looking at a generalpopulation of patients, only 50% adhere tothe recommendations and prescriptions oftheir providers,5 suggesting that adherence isa critical variable in the successful manage-ment of pain, and it needs to be a focus of on-going counseling.The literature on adherence in older adults

shows great variance in adherence rates. Someresearch has identified that older patients,compared with their younger counterparts,are more motivated to be adherent to bothpharmacologic and nonpharmacologic inter-ventions6e8 because of greater trust in thehealth care system and clinicians, a greaterfocus on becoming and remaining healthy,and greater acceptance of the recommenda-tions of their health care professionals.7 Otherresearch, however, has demonstrated the op-posite, with older patientsdand particularlythose with chronic health conditionsdhavingnonadherence rates between 26% and 75%,with the reasons for nonadherence being asso-ciated with admission to residential care ora hospital, the number of medicines pre-scribed, the costs of the medicines, and func-tional limitations of older adults.9,10 Lewiset al.11 found that patients reported additionalreasons for underusing medications such asopioids for pain, including financial concernsand the belief that medicines should only betaken if severe symptoms were present. Poundet al.12 noted that the main reason peoplewere not adherent to their medications wasthe result of concerns about the medicationsthemselves and a preference to take as littlemedication as possible. Nonadherence createsmany challenges for medical staff as it makestreatment decisions, such as efficacy of a givendrug and respective dosing adjustments, morechallenging when it may not be discernibleexactly what the patient is taking and when.In looking specifically at what is known

about adherence in cancer patients, concernsabout medical adherence are well-founded,given the high rates of pain among this popu-lation and the risks of pain crises. Although as

Vol. 45 No. 1 January 2013 45Adherence to Pain Medication Plans in Hospice

many as 70%e90% of cancer patients experi-ence pain by the final stages of the disease,13,14

cancer patients in general do not alwaysadhere to the pain management plan, withnonadherence rates ranging from 20% to33%.15,16 Nonadherence in cancer patientshas been linked to many factors includingfear of addiction,17e20 concerns about side ef-fects from the pain medication,8,17 poor com-munication between patient and physician orthe health care team,19 lack of knowledgeabout pain from the health care team,11 andviews that pain is ‘‘just part of the disease.’’17,20

Musi21 indicated that nonadherence in cancerpatients also is related to how patients viewpain. For some, the presence of pain starts torepresent a state of normalcy. Thus, patientsstart to have ambivalent feelings about not hav-ing pain as they recognize that even withoutpain they are unable to achieve prediseaseQOL and level of functioning. Although thereis literature on adherence in cancer pain ingeneral, there is a lack of research on adher-ence among older adults with cancer. A majorfocus of hospice care is on ensuring a pain-freedeath, to the extent determined by each pa-tient’s unique circumstances and goals ofcare. However, this focus, even when stronglyendorsed by patient and family, can easily be-come compromised when patients and care-givers agree on the treatment plan and thendo not adhere to the pain management planthat has been developed by the hospice inter-disciplinary team. Regardless of the educationand support provided by the hospice nurseand other members of the hospice team,deeply rooted fears associated with the ‘‘whatifs’’ of pain management remain, with manypatients and caregivers concerned about howopioids in particular might impact cognitionand ability for continued communication asdeath approaches.

This article reports on a study evaluating ad-herence to a pain management plan in olderadults with cancer who are under hospicecare. We particularly examined how pain-related factors (average pain, worst pain, hoursof controlled pain [none/mild] in the past24 hours, level of comfort, QOL, and symptomcontrol) and nonpharmacologic interventionsfor pain impact adherence, as well as changesin adherence over two points in time (48e72hours after admission and 7e10 days after

the initial time point). Recommendationsfor improving patient adherence also arediscussed.

We sought to answer the following researchquestions:

1) Do pain-related factors and nonphar-macologic interventions impact pain-treatment plan adherence in older cancerpatients in a community-based hospicesetting?

2) Is there a difference in pain-treatment planadherenceofolder cancerpatientsbetweenthe time of admission to community-basedhospice care and after care has begun?

MethodsStudy Design

The study population involved patients from13 community-based home hospice programsin the midwestern U.S. A descriptive correla-tional design was used to answer the questionsregarding the degree of adherence to the painmanagement plan for older adults with cancer.According to Burns and Grove,22 a descriptivecorrelational design is most appropriate whenexamining relationships between variables,particularly when there is no attempt to con-trol or manipulate the variables. Descriptivecorrelational designs help to facilitate theidentification of interrelationships that existin a situation over the course of a short periodof time.

The hospices were all participating ina larger randomized, controlled, experimentalstudy testing the effect of a multifaceted Trans-lating Research into Practice intervention topromote the adoption of evidence-based prac-tice for pain assessment and management inolder adults with cancer at the end of life;they represent small, medium, and large hos-pices, for profit and nonprofit, and both ruraland urban settings. Details on the larger studyare reported elsewhere.23,24 Human subjectsapproval was obtained from the InstitutionalHuman Subjects Review Board (IRB) at theUniversity of Iowa, which served as the IRBof record for hospices without an internalIRB. Approval was obtained from the corre-sponding human subjects review boards at par-ticipating hospices with an internal IRB. Allolder adults or their legal guardians provided

46 Vol. 45 No. 1 January 2013Sanders et al.

informed consent to participate. In the con-sent process, capacity for decision makingwas determined through a series of structuredquestions that documented understanding ofthe study risks and benefits. If decision-making capacity was acceptable, the patientwas judged able to reliably complete the studyinstruments. If not, permission for the primarycaregiver to complete the instruments asa proxy for the patient was obtained from theolder adult’s legal guardian. All participantsor their legal guardians provided verbal in-formed consent, and completion of the studyinterviews were verification of their impliedconsent. They also provided written informedconsent to obtain copies of their hospice med-ical records for the time frame correspondingwith the telephonic interviews.

SamplePatients meeting the following inclusion

criteria were invited to participate in thetelephonic interviews: 1) aged 55 years orolder, 2) diagnosis of cancer, 3) newly admit-ted to a participating hospice, 4) receivingcommunity-based hospice services from oneof the 13 hospices in the U.S. states of Iowa,Nebraska, or Missouri. ‘‘Community-based hos-pice’’ was defined as a setting in which patientsreceived hospice care in an environment thatallowed the patient or their family caregiverto oversee the implementation of the painmanagement plan (e.g., personal home or as-sisted living facility). Four hundred thirty-fivepatients were identified by the participatinghospices as meeting the established inclusioncriteria. Sixty-five patients (15% of the eligiblepatients) admitted during the study periodparticipated or had their caregivers serve asproxy. A total of 341 patients refused participa-tion in the study. An additional 29 patientsgave verbal consent and participated in thetelephonic interviews but did not returna signed consent document allowing accessto their medical record data necessary for de-termining adherence; therefore, they werenot included in this analysis. Reasons for refus-ing to participate include lack of interest inparticipation (n¼ 76), health condition toosevere (n¼ 70), caregiver unwilling to assistpatient with reporting (n¼ 45), patient was ac-tively dying or died before recruitment call(n¼ 42), patient too fatigued to participate

(n¼ 23), patient in the midst of a crisis situa-tion (n¼ 16), patient confused (n¼ 12), pa-tient lacked adequate time for participation(n¼ 11), patient unable to speak English(n¼ 2), hearing difficulties made a telephonicinterview impossible (n¼ 1), admitted to long-term care facility (n¼ 1), or patient did notanswer repeated attempts to contact via tele-phone (n¼ 42).

Study InstrumentsBrief Pain Inventory. The Brief Pain Inventory(BPI) is a valid and reliable multidimensionalpain instrument assessing pain history, inten-sity, location, and quality with excellent reli-ability across a large number of differentcancer pain samples and is relatively free ofcultural and linguistic bias. It takes less thanfive minutes to complete. It also elicits infor-mation regarding pain treatment effectivenessand pain-related interference with daily activi-ties, such as sleep, mood, and mobility, amongothers. Although developed for use with can-cer patients, the BPI has been validated andis recommended for palliative care and geriat-ric patients.25,26 Because the BPI depends onpatient report, it was used in patients whosecognitive abilities enabled them to provide re-liable responses. BPI uses a numeric ratingscale approach that has been demonstrated re-liable and valid for use with older adults, in-cluding those with mild-to-moderate cognitiveimpairment.27,28

Cognitive impairment, often present in ad-vanced illness with patients receiving opioidtreatment, may interfere with use of the BPI.The family caregiver was asked to serve as theproxy for patients unable to provide a ratingof pain intensity. Thus, either the patient pro-vided these data or the data were obtainedfrom the proxy. Although some research sug-gests that family caregivers can provide validreports of pain intensity at the end of life,other reports of overestimation of pain inten-sity by family caregivers suggest considerationof potential differences in the interpretationof proxy reports.29,30 In this study, the Cron-bach’s alpha for the BPI completed by the pa-tient and the caregiver was 0.89 and 0.90,respectively. Pain intensity was evaluated usingthe BPI items, ‘‘average pain’’ and ‘‘worst pain’’during the past 24 hours.

Vol. 45 No. 1 January 2013 47Adherence to Pain Medication Plans in Hospice

Brief Hospice Inventory. The Brief HospiceInventory (BHI) is a valid and reliable multidi-mensional instrument developed to assess out-comes among hospice patients that is simpleand minimizes subject burden.31 The BHIincludes pain and nonpain symptom assess-ment (including depression, anxiety, tiredness,loss of appetite, nausea, shortness of breath,and distress as a result of functional changes),QOL, and symptom control, using a 0e10 rat-ing scale demonstrated as effective for obtain-ing self-report in frail hospice patients andolder adults. In a study of 145 hospice patients,80% of whom were 70 years or older, two sub-scales were identified in the BHI: a symptomsubscale and a QOL subscale. Internal consis-tency of the BHI patient survey symptom sub-scale was 0.88 and that for the QOL subscalewas 0.94. Test-retest reliabilities betweenWeek 1 and 2 ranged from 0.58 to 0.63, withlower reliabilities expected because of chang-ing health status of hospice patients. Correla-tions between patient and caregiver reportswere strong, ranging from 0.71 to 0.83. Forthis study, the total score of the BHI was notused; instead, only individual items were usedin analyses, rather than the two subscales. Inthis study, the Cronbach’s alpha for the BHIwas 0.80 for patients and 0.78 for caregivers.In the event a patient was unable to completethe BHI, similar procedures as discussed aboveunder the BPI were used.

Patient Pain Management Log. The PatientPain Management Log (PPML), an adaptationof the published Pain Diary adapted by thegrant team, provided data from the patientor the caregiver.32 Information collected re-lated to the patient’s pain experience overthe past 24 hours, dosages of medication theyhad taken in the past 24 hours, as well as extramedications taken, medications skipped, andnonpharmacologic therapies used. This pro-vided information on patient goals and choicesregarding their pain and pain management.

Patient Adherence Tool. The Patient AdherenceTool (PAT) was adapted from a cancerpain algorithm study and contains three sub-scales to measure adherence to analgesic useincluding: 1) opioid use, 2) nonsteroidal anti-inflammatory drug (NSAID) and acetamino-phen use, and 3) neuropathic pain adjuvant

use.33 The PAT combines provider medicationprescription information abstracted from themedical record with the patient interview data.The medical record is used only for the comple-tion of the PAT, not as a separate measure. Re-search assistants (RAs) received 10 hours oftraining on the use of the PAT and Medical Re-cord Abstraction tool as it related to completingthe PAT. Interrater reliability of the PAT was es-tablished by two trained reviewers on a randomlyselected group of 10 patient medical records.The two raters were experienced with the medi-cal record abstraction process and commonissues arising in interpretation of the evidence-based practices. Initial interrater reliability ofthe PAT was established at 82%, with intraraterreliability enhanced by having one trained ab-stractor re-abstract 10 records after a two-monthperiod, demonstrating 93% concurrence.

All medication doses were recorded as theywere prescribed, and only NSAIDs, acetamino-phen, opioids, and neuropathic pain medica-tions used specifically for pain control wereincluded. For example, if a subject was takingaspirin on a daily basis for cardiovascularprophylaxis, this would not be included asa medication used for pain. The most recentmedication orders were used, which excludedmultiple orders, and if a combination drugwas prescribed, the total milligrams of opioidonly were included. Additionally, fentanyltransdermal patch doses were converted frommicrograms per hour (mcg/hour) to milli-grams per 24 hours (mg/24 hours). Dosagesfrom the PPML and the patient medical re-cord were documented on a medication sheetincluded in the PAT and then totaled for useon the subscales.

Each of the three subscales included in thePAT contains a scoring system based on the ra-tio of medications prescribed to medicationstaken and a scale representing the patient’spain score from the BPI. The subscales were di-vided between medications prescribed‘‘around the clock’’ (ATC) and ‘‘as needed’’(pro re nata [PRN]). Scores for the ATC med-ications can range from 0 to 2 points based onthe ratio of total medications taken in 24 hoursand total medications prescribed for 24 hours.If there was no order for an ATC medicationand the subject had not taken any, the scorewould be 2. If the subject had taken 100% ofthe ordered ATC medication dose, the score

48 Vol. 45 No. 1 January 2013Sanders et al.

also would be 2. A score of 1 would be countedif the subject had taken $50% to #99% of theprescribed dose, and a score of 0 would be ap-plied if the subject had taken#50% of the pre-scribed dose. There are a possible three pointsto obtain on each subscale. Step 1 is added toStep 2 and then the scores from all three of thesubscales are summed and then averaged forthe final adherence score. The PAT, with de-tailed instructions on its use, is available on re-quest from the authors.

Data Collection ProceduresData were collected during telephonic inter-

views with patients 65 years and older or theirproxy (caregiver) at two time points after ad-mission to a community-based hospice setting.The first interviews were conducted within72 hours of admission (T1) and the follow-upinterviews were completed 7e10 days afterthe initial interview (T2). Whenever possible,patients completed the interviews indepen-dently. If unable, their primary caregiverserved as a proxy reporter for all sources ofdata. Sixty-five patients from 13 unrelated mid-western hospices or their proxies completedthe initial interview, with 55 patients or theirproxies completing the follow-up interviews.Additional information for each subject wascollected from the medical records receivedfrom the participating hospices. As outlinedpreviously, the instruments used to gatherdata included the BPI, BHI, PPML, and PAT.Interviewers received more than five hours oftraining on the scripts for the patient/care-giver interviews. Before interviewing real pa-tients, role plays with volunteer older adultpatients were conducted. Patients and/or theirproxies received copies of all study instru-ments before the interview so as to be able tofollow along as a trained RA asked each ques-tion on the instruments and documented re-sponses on a duplicate copy in the projectoffice.

Medical Records AbstractionMedication data were obtained from patients’

hospice medical records to determine the phar-macologic pain treatment plan. Medical recordsfor the first two weeks following hospice admis-sion were reviewed for this study. Data on thepain medication orders corresponding to thedates of the patient interviews were collected.

Medical record data were abstracted and entereddirectly into an ACCESS database developed spe-cifically for grant use by trained RAs, who werenurses with experience in acute care, homecare, hospice care, and geriatrics.

Data AnalysisThe data management and statistical analyses

were performed using SAS 9.2 (SAS InstituteInc., Cary, NC). A 0.05 level of significancewas used for all tests. Demographic characteris-tics of patients were analyzed using descriptivestatistics. Statistical differences among thethree PAT subscales, their means and totalsbetween the admission interview (T1) and sec-ond interview (T2), were determined usingpaired t-tests. Seven explanatory variables werecollected and considered for inclusion in thelogistic regression model to examine factorsassociated with pain medicine adherence. Thevariables include average pain in the past24 hours, worst pain in the past 24 hours, hoursof controlled pain (none/mild) in the past24 hours, level of comfort in the past 24 hours,QOL in the past 24 hours, degree of symptomsin the past 24 hours, and nonpharmacologictherapies used in the past 24 hours. The sevenvariables were analyzed by comparing the differ-ence between the two interviews for the patientself-report group and caregiver proxy reportgroup. Eight patients were excluded from thepaired t-test analysis because of their changeof report type (patient vs. proxy report) fromthe first interview to the second interview.Logistic regression was applied to answer

our first research question, whether pain-related factors and nonpharmacologic inter-ventions impact pain medicine adherence,where the dependent variable is the dichoto-mized patients’ adherence total score: whetherthe sum of the three subscales is equal tonine, the perfect score. As mentioned earlier,data were collected for two interviews at T1

and T2. Therefore, correlations existed amongpatients within the same hospice, as well asbetween the two interviews of each patient.We used generalized estimating equationsfor two-level clusters and assumed an ex-changeable working correlation structure(e.g., the correlation between any two inter-views of each patient is the same). For a betterinterpretation, numeric explanatory variableswith uneven distributions of their possible

Table 1Demographic Characteristics of Patients WhoCompleted Interviews 1 and 2 as Reported by

Either Patients or Caregivers

Characteristics

FirstInterview

(n¼ 65), n (%)

SecondInterview

(n¼ 55), n (%)

GenderMale 36 (55.4) 32 (58.2)Female 29 (44.6) 23 (41.8)

Age (years)55e64 7 (10.8) 6 (10.9)65e74 19 (29.2) 17 (30.9)75e84 24 (36.9) 19 (34.5)>85 15 (23.1) 13 (23.7)

RaceBlack 3 (4.6) 2 (3.6)White 58 (89.2) 51 (92.7)

Vol. 45 No. 1 January 2013 49Adherence to Pain Medication Plans in Hospice

outcomes were categorized before they wereincluded in the model: hours of controlledpain was dichotomized based on whether theproportion of hours of controlled pain wasgreater than 0.75; the category of nonpharma-cologic therapies was dichotomized based onwhether any type of nonpharmacologic thera-pies was used. To determine the final model,backward selection was performed on the ini-tial model with the seven explanatory variablesplus the type of report (i.e., self-report orproxy report). A final regression model wasthen fit based on the significant variables iden-tified by the backward selection procedurewith a significance level of P¼ 0.01.

Other 4 (6.2) 2 (3.6)

There were no statistically significant differences between patientsat both time points.

ResultsSample Description

Thirty-two patients were able to provide self-reports during the first interview (T1), and 25patients provided self-reports for the secondinterview (T2). Proxy (caregiver) reports werecollected for 33 patients at T1 and for 30 pa-tients at T2. The overall sample gender distri-bution was fairly equal, with slightly moremales than females participating. The age cri-terion for inclusion was reduced from 65 to55 years to improve recruitment and increasethe sample, resulting in 10.8% of participantsbetween 55e64 years, 29.2% between 65e74years, 36.9% between 75e84 years, and23.1% older than 85 years. The sample waspredominantly Caucasian (89.2%). Table 1shows the specific demographic data for thepatient sample (n¼ 65). Because 10 patientswere not able to complete both interviews,data from both interview periods are providedfor comparison in Table 1.

Medical Record DataData from patient medical records, used to

complete the PAT, indicated that most patientshad opioids ordered to manage their pain, with78.1%having anopioid order at the timeof theirfirst interview (T1) and 75.9% at the secondinterview (T2). Additionally, a much lowerpercentage of patients had orders for NSAIDs/acetaminophen (T1¼ 34.4%; T2¼ 35.2%) andneuropathic pain medications (T1¼ 10.9%;T2¼ 9.3%) for the same time periods.

Brief Pain InventoryData from the BPI provided by either the pa-

tient or their proxy (caregiver) indicated thatthe average pain in the past 24 hours reportedfor all patients was in the mild range (3.34 orless) for both T1 and T2. Average pain reportsboth for patients who were able to self-reportand those who had proxy reports decreasedfrom T1 to T2, with patient self-reports decreas-ing from 2.34 to 2.04 and proxy reports de-creasing from 3.34 to 2.63. Neither decreasewas significant. Patient self-reports of worstpain in the past 24 hours were higher thantheir reports of average pain, as expected,and decreased from T1 to T2, diminishingfrom 3.94 to 3.28. For patients with proxyreports, worst pain in the last 24 hours was re-ported at a moderate level, 5.94 at T1, and de-creased to 4.0 at T2. This change wassignificant (P-value 0.05). In addition, the dif-ference between the worst pain in the past24 hours across reporting groups (patientself-report vs. proxy report) at T1 was signifi-cant (P¼ 0.01) (Table 2).

Brief Hospice InventoryData on the BHI indicated that the level of

comfort, QOL, and degree of symptom controlall decreased slightly for patients able toself-report from T1 to T2. None of the changesnoted from T1 to T2 were significant, reinforc-ing previous determinations of connectivityamong these clinical variables and pain.31 Forthose patients with proxy reports, level of

Table2

Rep

ortsof‘‘Average

Pain’’an

d‘‘WorstPain’’ontheBrief

PainInventory:PatientSelf-Rep

ort

orProxyRep

ort

atInterviews1an

d2

BPIData

PatientRep

ort

Proxy

Rep

ort

PatientSe

lf-Rep

ort

vs.Proxy

Rep

ort

First

Interview

Seco

nd

Interview

Pairedt-test

First

Interview

Seco

nd

Interview

Pairedt-test

First

Interview(T

1)

Seco

nd

Interview(T

2)

nMean(SD)

nMean(SD)

nP-value

nMean(SD)

nMean(SD)

nP-value

TwoSample

t-test(P-value)

Average

pain

322.34

(2.25)

252.04

(1.97)

230.48

7333

3.34

(2.07)

302.63

(2.57)

240.20

520.06

940.33

67Worstpain

323.94

(3.0)

253.28

(2.78)

230.20

8233

5.94

(3.2)

304.0(3.41)

240.05

090.01

160.39

23Hours

ofnone/

mildpain

inthepast24

hours

3220

.28(6.89)

2520

.96(5.34)

22a

0.45

3319

.81(5.73)

3021

.04(5.47)

20a

0.20

70.78

590.95

89

aPatients

wereex

cluded

inthepairedt-tests

becau

sereportsat

T1an

dT2wereprovided

bydifferentreporters(p

atientvs.proxy).

50 Vol. 45 No. 1 January 2013Sanders et al.

comfort and degree of symptom control alsodecreased, whereas QOL increased slightlyfrom T1 to T2. Again, none of the changeswere significant. However, there were signifi-cant differences noted when comparing thelevel of comfort and QOL items between thetwo reporting groups for each time period.In both instances, proxy reports were signifi-cantly higher (i.e., perception that patients’symptoms were worse) (Table 3).

Patient Pain Management LogPPML data provided by either patient self-

report or proxy (caregiver) report indicatedthat 28.1% of patients took PRN medicationsin the 24 hours before T1 and 26.4% took extrapain medications in the 24 hours before T2.Conversely, 4.7% of patients skipped ‘‘ordered’’pain medications in the 24 hours before T1 and1.9% skipped ordered pain medications in the24 hours before T2. Nonpharmacologic thera-pies were used very sparingly during the24 hours before each telephonic interview.Patients able to self-report at T1 indicated useof any nonpharmacologic therapies at lessthan one time per patient (0.75) during the24 hours before their telephonic interview.This increased just slightly by T2 to 1.33. Simi-larly, use of nonpharmacologic therapies as re-ported by proxies also was low, 1.21 at T1 anddown slightly to 0.78 by T2. None of thesechanges were noted as significant (Table 4). Avariety of nonpharmacologic therapies wereused, including heat, ice, massage, rest, changeposition, physical therapy, music, relaxation,prayer/meditation, and other (distraction,healing touch, oxygen, vaporizer, andwhirlpoolbath). Among these therapies, changing posi-tion, resting, and prayer/meditation wereused most often (23%, 22%, and 22%, respec-tively) in the 24 hours before the telephonicinterviews.

Patient Adherence ToolData from the PAT indicated high levels of

adherence to pharmacologic pain manage-ment plans. There were no significant differ-ences noted between patient self-report andproxy reports on the PAT at T1 and T2; there-fore, for reporting purposes, all have beencombined. The PAT allows for a possible totalscore of nine points based on a maximum ofthree points on each of three subscales: 1)

Table 3Reports of Level of Comfort, QOL, and Symptom Control on the Brief Hospice Inventory: Patient Self-Report or Proxy Report at Interviews 1 and 2

BHI Data

Patient Report Proxy Report Patient Self-Report vs. Proxy Report

First InterviewSecondInterview Paired t-test First Interview

SecondInterview Paired t-test First Interview (T1) Second Interview (T2)

n Mean (SD) n Mean (SD) n P-value n Mean (SD) n Mean (SD) n P-value Two Sample t-test (P-value)

Level of comfort 32 2.94 (2.65) 25 2.76 (2.01) 23 0.7918 33 4.58 (2.09) 30 4.39 (2.7) 21 0.286 0.0082 0.0152QOL 32 4.41 (3.26) 25 4.2 (2.96) 23 0.5831 33 6.57 (2.69) 30 6.78 (2.86) 21 0.5356 0.0059 0.0025Symptom control 32 3.72 (2.96) 25 3.32 (2.67) 23a 0.3726 33 4.39 (3.02) 30 4.15 (3.02) 20a 0.5045 0.3789 0.2995

QOL¼ quality of life.aPatients were excluded in the paired t-tests because reports at T1 and T2 were provided by different reporters (patient vs. proxy).

Table 4Number of Hours Pain Was Reported as None/Mild in the Past 24 Hours and Number of Nonpharmacologic Therapies Used in the Past 24 hours as Reported

on the Patient Pain Management Log by Patient Self-Report or Proxy Report at Interviews 1 and 2

PPML Data

Patient Report Proxy ReportPatient Self-Report vs. Proxy

Report

FirstInterview

SecondInterview Paired t-test

FirstInterview

SecondInterview Paired t-test

FirstInterview (T1)

SecondInterview (T2)

n Mean (SD) n Mean (SD) na P-value n Mean (SD) n Mean (SD) na P-value Two Sample t-test (P-value)

Hours of none/mildpain in the past24 hours

32 20.28 (6.89) 25 20.96 (5.34) 22 0.45 33 19.81 (5.73) 30 21.04 (5.47) 20 0.2607 0.7859 0.9589

Number ofnonpharmacologictherapies used inthe past 24 hours

32 0.75 (1.08) 25 1.33 (2.37) 19 0.3755 33 1.21 (1.35) 30 0.78 (1.22) 21 0.6289 0.1621 0.3369

aPatients were excluded in the paired t-tests because reports at T1 and T2 were provided by different reporters (patient vs. proxy).

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52 Vol. 45 No. 1 January 2013Sanders et al.

opioids, 2) NSAID/acetaminophen, and 3)neuropathic pain medications. The overallmean adherence for all patients at T1 was cal-culated at 8.43 and for T2 at 8.38. Patientswere the least adherent with their opioid or-ders at both T1 and T2, as indicated bya mean adherence for both time periods of2.65 of the maximum three points on the opi-oid subscale. Patients were the most adherentto NSAID/acetaminophen orders at T1 (2.91)and to orders for neuropathic medications atT2 (2.89). No significance was noted betweenoverall reports at T1 and T2 (Table 5).

Final Model (Logistic Regression Model WithGeneralized Estimating Equations)

Two variables, hours of controlled pain andlevel of comfort, stayed in the final model afterthe backward selection procedure, with a signif-icance level of 0.1. Results show that, on aver-age, when the remaining variable in themodel is fixed 1) the patients with controlledpain (defined as none or mild pain) morethan 75% of the time during the last 24 hourswere 30.2% more likely to have perfect adher-ence scores when all the other six explanatoryvariables were controlled (P-value 0.0278) and2) patients were 68.4% less likely to have a per-fect adherence score when level of comfort in-creased by 1 (P-value 0.0034). In conclusion, ofall the variables evaluated, the one that standsout the most, and for which there is statisticalsignificance, is that patients with more hoursof controlled pain in the last 24 hours weremore likely to have better adherence andthat patients with a higher level of comfortover the past few days were more likely tohave worse adherence. This finding suggeststhat as patients become more comfortablethrough good pain management, adherenceto pain relief regimens must continue to be

Table 5PAT Data for Interview 1 (T1) and Interview 2 (T2): Pa

Combine

PAT Data

Interview 1 (

n Mean R

Subscale 1 (opioids), maximum¼ 3 65 2.65 1Subscale 2 (NSAIDs/acetaminophen) 65 2.91 1Subscale 3 (neuropathic) 65 2.88 1Subscale total, maximum¼ 9 65 8.43 7

No significance noted.PAT¼ Patient Adherence Tool; NSAID¼ nonsteroidal anti-inflammatory dru

emphasized to ensure that pain does notreemerge.

DiscussionPoor medication adherence in older adults

can lead to adverse consequences for thepatients themselves and for the larger healthcare system, given that increased rates of hospi-talization and even death can result.34,35 Thepresent study was able to identify that painmedication adherence among older adultswith cancer receiving hospice care is excep-tionally high (96.2%) compared with other ad-herence data for older adults and those withcancer, particularly when looking at PRN med-ications.36 This may be a function of their stageof disease, the support and education aboutpain and pain management provided by hos-pice, impact of their caregiver, or a characteris-tic of the patients who are referred and electedto receive hospice care and participate in thisstudy. PAT assesses adherence, but not effec-tiveness, which was not the primary focus ofthis study, but it is clearly important. It canbe inferred from low pain scores and othercomfort-related variables that the pain controlregimens were relatively efficacious.It is important to note that patient adher-

ence is associated with patient choice, whichis consistent with the hospice goal of patient-centered care. Although the present studydid not identify if adherence was high becauseof the patient’s choice to adhere (vs. familypressure to adhere) and the sample that elec-ted to participate in the study, the authors rec-ognize through their clinical experience thatsome patients may choose to not take theirpain medicines because of concerns overadverse effects such as sedation, cognitive im-pairment, or other reasons. A more in-depth

tient Self-Report and Proxy (Caregiver) Reportd

T1) Interview 2 (T2)

ange SD n Mean Range SD

e3 .67 55 2.65 1e3 .62e3 .34 55 2.84 0e3 .57e3 .48 55 2.89 1e3 .46e9 .83 55 8.38 6e9 .95

g.

Vol. 45 No. 1 January 2013 53Adherence to Pain Medication Plans in Hospice

examination into the reasons for the high ad-herence rates in this study population wouldhelp provide insight into this phenomenon,as well as uncover how patient choice playsa role in determining adherence.

Although we did not collect data on lengthof hospice stay for the study cohort, the pa-tients who participated were not imminentlydying (e.g., not in their last hours to days oflife), which may have allowed them to bemore active participants in their pain care. Ad-ditionally, the effect of caregivers (proxies)and their role in assuring or promoting medi-cation use was not evaluated in this study; thus,it is unknown how this may have impacted theadherence rates noted, as some may have beenover- or even underreporting adherence. It isreasonable to conclude that individuals whoelect to receive hospice careda program thatencourages involvement and education ofboth the patients and their families/caregi-versdand elect to participate in this type ofstudy may be highly self-motivated and havecommitted caregivers who support and en-courage adherence to treatment plans. Re-gardless, once admitted to hospice care, theolder adults with cancer in this study werehighly adherent. Future research should com-pare these outcomes with other health care set-tings of patients with advanced medical illnessand determine more specific reasons for ad-herence, nonadherence (if applicable), andconsequences.

Research on adherence suggests that educa-tion alone is not enough to assure high adher-ence rates; instead, behavioral modificationsuch as dosing packages or cues to help pa-tients to remember to take their medicinesare necessary.37 In examining the findingsfrom the present study, this is particularly im-portant, given that patients who reported in-creased comfort in the past few days showedreduced adherence. When one is comfortable,the physical cue to take the medication is re-duced, thus placing the patient at risk for re-duced adherence and heightening the riskfor a reemergence of pain. Hospice nursesshould consider ways to use memory cues orother strategies besides physical discomfort tohelp patients remember to take the prescribedpain medicines. Careful monitoring anddiscussion about the need for continued ad-herence, especially once the patient is

comfortable, are critical functions of the hos-pice nurse. Additionally, the use of nonphar-macologic strategies for pain managementwas quite low in this study. As attention is givento nonpharmacologic treatments for pain inolder cancer patients to reduce medication-related adverse effects, it is important to deter-mine how adherent patients will be to thesecourses of treatment.

In summary, adherence toapainmanagementplan in older cancer patients in hospice care isimportant. This study showed high adherenceto the pain management plan; however, futureresearch needs to continue to examine this topicwith other populations of older adults receivinghospice care to determine if adherence remainsthis high and identify additional factors thatmayimpact adherence. Whereas self-determinationand patient choice are essentials of hospicecare, educating patients and their caregiversabout the importanceof adherence is equally im-portant as this is one key step in ensuring amorecomfortable death.

LimitationsThe results of this study need to be inter-

preted with caution, given the low participa-tion rate from hospice patients and proxies.Although it is well known that hospice patientshave lower participation rates in research,38

the lack of participation impacts the ability ofthese findings to be generalized to othergroups of older adults with cancer in hospicecare. Response bias is a concern in this study.The patients who did not participate in thisstudy were typically sicker and closer to deaththan those who did participate. Thus, it is un-known how adherent they were to their painmedicine.

Another limitation of this study is that valid-ity checks were not performed on the proxy re-ports. Research has determined that familymembers overreport pain in hospice pa-tients.39 Thus, proxy reports of pain couldhave been overestimated, impacting the gener-alizability of the findings; however, this is notknown for the present study. Additionally,this study did not analyze other factors thatmay impact adherence, particularly, what ef-fect the involvement of a caregiver may haveon a patient’s adherence to their medicationregimen.

54 Vol. 45 No. 1 January 2013Sanders et al.

Disclosures and AcknowledgmentsThis study was supported by National Can-

cer Institute grant R01CA115363. The authorsdeclare no conflicts of interest.

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