Investigating safe care practices in the provision of oral systemic … · 2019. 8. 20. · Safe care practices in oral SACT provision Michael Mawhinney 8 from cytotoxic drugs, and

Safe care practices in oral SACT provision Michael Mawhinney

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Investigating safe care practices in the provision of

oral systemic anti-cancer treatment

Michael Mawhinney MSc BSc(Hons) RN


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Executive Summary

Background:

Oral systemic anti-cancer treatment (SACT) refers to any treatment for cancer that is taken orally,

therefore as a tablet or capsule. Recent decades have demonstrated a significant increase in the

availability of oral SACT. Patient experience of receiving these treatments is relatively unknown,

under-reported and no gold-standard in healthcare interventions to support these individuals has

been recommended. America and Canada are front runners for reporting standards of care and

models of care implored to support patients with established means of patient follow-up and

continued support. The purpose of this Fellowship was to investigate these provisions with a view to

recommending improvements for the National Health Service (NHS) in the United Kingdom (UK).

Aims:

• To investigate safe care practices for patients receiving oral SACT in America & Canada.

• To learn from the experiences of health professionals and health researchers in America &

Canada about the best way to provide patient-centred care in the delivery of oral SACT.

• To identify the elements of nursing practice that facilitate safe, effective and acceptable care

for patients receiving oral SACT.

• To develop recommendations for the safe management of oral SACT informed by examples

of good practice in America & Canada.

• To highlight key areas for consideration for future research globally.

Methods:

Written research, observation and interviews with pioneering clinical and academic health

professionals across six states in the USA and one province in Canada. Across a four week, two-leg

period I visited eight clinical areas, met with six health researchers, delivered four guest lectures and

presented at one national conference to share best practices in the UK. Multiple models of care

were observed, and several in-depth discussions and interviews hosted with American and Canadian

health providers or researchers.

Findings:

America and Canada had well established models of care for people with cancer (PWC) receiving an

oral SACT. Models of care included patient education delivered by a nurse or a pharmacist, with

follow-up interventions prescribed at specific timepoints based on an individual need, or oral SACT

requirement. Governance of oral SACT was monitored through quality committees, or working


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groups of prescribers, dispensers and care givers at the healthcare provider site. These groups

stipulated the amount of intervention or support required dependent on the individual oral SACT.

Adherence to oral SACT was generally thought to be very high with health professionals and

researchers placing more emphasis and concern toward an individual’s ability to self-manage their

care, understanding when to escalate concerns or alter their treatment plan.

Finally, all healthcare providers had well established and embedded technological systems to

support both the patient (through the use of Apps and e-communication) and the health

professional (no paper records). High functioning, transferrable electronic records enabled

continuity of care and multiple health professionals to co-ordinate healthcare interventions

observing a patient’s clinical status and pathway.

Recommendations:

#1 - All healthcare providers in the UK should implement a specific model of care to provide patient

education delivered by a nurse, or pharmacist to anyone commencing an oral SACT

#2 – All healthcare providers in the UK should implement an oral SACT working group or governance

committee to streamline a drug specific, patient pathway, providing accountability and governance

to oral SACT processes

#3 - UK health providers should consider implementing a new role: the oral SACT clinical nurse

specialist

#4 - All NHS providers should ensure they provide patients with a tool to assess their own experience

of side effects. An excellent example is the UKONS traffic light toxicity grading scale.

#5 - The digital agenda should be the top priority for the NHS, ensuring all NHS providers fully embed

technology to enhance both patient and health professional experience.


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Table of contents

Contents

Executive Summary ................................................................................................................................. 2

Table of contents .................................................................................................................................... 4

Acknowledgements ................................................................................................................................. 5

Abbreviations .......................................................................................................................................... 6

About the author .................................................................................................................................... 6

1.0 Introduction ...................................................................................................................................... 7

2.0 Aims and objectives ........................................................................................................................ 11

3.0 Fellowship methods ........................................................................................................................ 12

4.0 Itinerary ........................................................................................................................................... 12

5.0 Findings ........................................................................................................................................... 14

5.1 Models of care for patients receiving an oral SACT .................................................................... 14

5.2 The challenge of adherence and toxicity management .............................................................. 21

5.3 The use of technology in healthcare ........................................................................................... 22

5.4 The challenge to the UK and National Health Service ................................................................ 23

6.0 Conclusions, Recommendations and Personal Reflections ............................................................ 25

6.1 Recommendations ...................................................................................................................... 25

6.2 Personal reflections .................................................................................................................... 26

7.0 Dissemination and next steps ......................................................................................................... 27

References ............................................................................................................................................ 28

Relevant contact information ............................................................................................................... 31


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Acknowledgements

A sincere thank you must first and foremost be given to the Winston Churchill Memorial Trust. I

have been overwhelmed with the support and continued opportunities provided to me by this

established organisation, from application through to return from my travels. I have been inspired

by your commitment to supporting improvements to the people of the United Kingdom and I look

forward to continued workings in the future. A further thank you goes to the Burdett Trust for

Nursing who partnered with the Winston Churchill Memorial Trust to enable this Fellowship, for

them I am deeply grateful.

I was fortunate enough to collaborate and meet with several pioneering health professionals across

America and Canada. My first thank you goes to Pam Ginex, senior manager in the Oncology

Nursing Society. Following an email, Pam took up the gauntlet and helped me design the entire

travels of this Fellowship. A sincere thank you for putting me in touch with the individuals you

recommended – your collaborative approach has been invaluable to this project.

My second thanks goes to Mary Anderson, a pioneering cancer nurse who displayed some of the

best hospitality I have ever seen, sharing not only her professional experiences but also her family

and life in Kentucky. It was an absolute pleasure spending time in your company and I will forever

be indebted to your exceptional kindness and hospitality. Until the next time we meet Mary!

My third thanks goes to Professor Sandra Spoelstra. Meeting you was as equally inspiring as it was

refreshing; to see the impact from your research and your close links to practice and quality

improvement was invaluable. Thank you for your personal coaching, encouragement and direction

regarding future opportunities. I very much look forward to working together in the future.

My final thanks go to all the other individuals I met along the way, of whom there are too many to

mention. I was astounded by the kindness, passion and hospitality I was met with across six

American States and in Toronto. While an ocean might separate us, the challenge of cancer remains

acute and these travels were a humbling reminder that cancer crosses all demographics but likewise

the compassion and commitment from health professionals is the same, both in the United

Kingdom, but internationally.


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Abbreviations

IV: Intravenous

NHS: National Health Service

OEC: Oral Education Clinic

ONN: Oncology Nurse Navigator

PCN: Person-Centred Nursing

PWC: People With Cancer

SACT: Systemic Anti-Cancer Treatment

TFU: Telephone Follow-Up

TRT: Treatment Related Toxicity

WCMT: Winston Churchill Memorial Trust

About the author

I qualified as a registered nurse from Queens University

Belfast in 2009. Since qualifying I have worked in various

roles within cancer services across several NHS Trusts. I

currently work full time as a Matron in York Teaching

Hospitals NHS Foundation Trust but have recently

completed a PhD at Oxford Brookes University. My PhD

was a mixed method, applied health research study

investigating patient experience of receiving an oral SACT

and the views of health professionals involved in

supporting this patient population. The findings from

this PhD will have an impact on the development of

health policy and recommendations for UK NHS

healthcare providers, however the findings were limited

to a UK setting. I applied for a WCMT Fellowship in order

to meet a series of senior health professionals and key

health researchers in America and Canada who are

pioneering models of care and directly involved with quality improvement in cancer care. The

The first of many Starbucks coffees on arrival into the USA; JFK airport, awaiting connection to Boston


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purpose of the trip was to understand how different healthcare institutions have met the needs of

people with cancer (PWC) receiving an oral SACT.

1.0 Introduction

In 2015, within the United Kingdom, 359,960 people were given a new diagnosis of cancer (Cancer

Research UK, 2018). Worldwide, in 2012 there were 14.1 million new cancer cases and 8.2 million

deaths attributed to cancer (International Agency for Research on Cancer, 2016). As access to

healthcare and diagnostic investigations improve, this figure is likely to increase.

Historically, the treatment of cancer was dominated by surgery and radiotherapy however in recent

decades, new data suggested that combination chemotherapy was more effective (DeVita and Chu,

2008). Chemotherapy, a widely known term, refers to the use of cytotoxic medicine to kill cancer

cells, however the term ‘Systemic Anti-Cancer Treatment’ is slowly replacing its use. SACT refers to a

treatment that can interact with cancer, irrespective of where it is in the body and encompasses

several types of drugs: cytotoxic agents, biological agents and targeted cytostatic agents.

SACT has traditionally been administered intravenously (IV) (O’Neill and Twelves, 2002). IV

treatments are usually administered in a hospital outpatient or inpatient setting. IV access is gained

by the insertion of a cannula either into a peripheral vein or a permanently inserted central venous

catheter. SACT treatments are then administered by specialist trained nursing staff. SACT nurses

have a substantial role in managing the treatment and care of patients receiving SACT (Roe and

Lennan, 2014) and typically prior to any administration carry out pre-treatment assessment

including: blood tests, review of current side effects or medical issues and administer pre-

medications.

Treatment administration in the hospital setting provides opportunity for patients to receive

education regarding treatments as health professionals are available to answer potential questions

from patients (Moore, 2007), and regulate clinical governance for safe administration (Bedell, 2003;

Department of Health, 2014; Komatsu, Yagasaki, and Yoshimura, 2014). Such governance is

essential to protect not only the patient, but also the health professional and the environment. In

some cases, the IV SACT might be delivered over a relatively short period of time, such as docetaxel

that can be delivered within an hour; however some treatments, such as platinum agents, can be

burdensome as they require longer administration with multiple pre- and post-infusion medicines,

which might take over 6 hours’. The result for the patient can be numerous and lengthy treatment

visits, increased risk of infection and thrombosis from invasive devices, risk of extravasation injury


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from cytotoxic drugs, and other adverse treatment experiences associated with IV chemotherapy

administration.

In recent decades, there has been a significant increase in the availability of SACT administered

orally, as a tablet or capsule (Mancini and Wilson, 2012). Some of these medications have

substituted an IV medication, and in other instances the oral SACT is used in combination with IV

therapy (So, 2010). The availability of oral SACT to patients is likely to increase as pharmaceutical

developments continue (Weingart et al., 2008).

Oral treatments have proved to be as effective as their parenteral counterparts (von Pawel et al.,

2001; O'Shaughnessy et al., 2002) and in some instances more effective, as in the case of treatment

of chronic myeloid leukaemia with oral imatinib compared to parenteral cytarabine and interferon

(O'Brien et al., 2003). Patients prefer oral SACT that has equivocal treatment efficacy to IV SACT and

report that oral SACT provides an increased sense of control of their treatment in comparison to IV

SACT (Liu et al., 1997; Twelves et al., 2006).

There are significant advantages to oral SACT (Williamson, 2008). Oral administration enables

prolonged drug exposure and daily administration schedules are relatively-well tolerated, such as

anti-angiogenic drug regimens (O'Neill and Twelves, 2002). Treatment can largely take place in the

patient’s own home, preventing regular hospital visits and increasing a sense of independence and

control (Liu et al., 1997; Bedell, 2003;). Receiving treatments at home is arguably advantageous and

in keeping with recommendations from the UK Cancer Reform Strategy (Department of Health,

2007), which recommends that people with cancer (PWC) should receive the care they require in the

most appropriate setting. The patient also avoids the painful process of cannulation while the risks

of extravasation and infusion related complications are non-existent (Hartigan, 2003; Halfdanarson

and Jatoi, 2010). When the advantages of oral SACT are considered in their entirety, it is clear to see

why PWC report such convenience and an improved quality of life (Segal et al., 2014), most

preferring oral therapy to IV administration (Fallowfield et al., 2006).

It is, however, essential to acknowledge the disadvantages of oral SACT. PWC receiving oral SACT

are significantly distanced from healthcare providers and have reduced clinical contact (Birner, 2003;

Hartigan, 2003). Some PWC perceive IV therapy to be more effective (Findlay, von Minckwitz, and

Wardley, 2008), but there is also a misconception that oral treatments result in fewer side effects

(Bedell, 2003) whilst in reality, in some regimens the side effects may be more severe (Halfdanarson

and Jatoi, 2010). Furthermore, the regimen itself and dosages of the drug(s) can be complex, with

complicated dosing schedules (timings and changes of dose from day to day) resulting in issues with

adherence (Given, Spoelstra, and Grant, 2011). Some PWC have also commented a preference


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toward IV therapy, because IV SACT is given intermittently so they can achieve periods of forgetting

about cancer and its treatment between treatment cycles (Mancini and Wilson, 2012).

IV administration was traditionally preferred as it was possible for healthcare providers to control

and record the exact dose administered (Conde-Estevez, Salas, and Albanell, 2013). Oral SACT are

often referred to as having a narrow therapeutic index, as capsules or tablets have fixed doses; thus

the difference between therapeutic dose and the administered dose might result in low

bioavailability, decreasing efficacy, or excessive bioavailability resulting in significant toxicities

(Neuss et al., 2013). Within this context, adherence and correct administration of the medication

are paramount.

Predictions indicate adherence to oral SACT is poorer than that of their intravenous counterparts

(Weingart, et al., 2008). Under-adherence to oral SACT has been reported in 20% to 80% of people

(Spoelstra and Given, 2011), while over adherence has also been reported (Mayer et al., 2009). It

has been proposed that in order to maintain effective, optimum therapeutic dosage, a

multidisciplinary approach is required (Vioral et al., 2014).

In 2008, the National Patient Safety Agency (NPSA, 2008) released a statement highlighting the risks

associated with oral SACT. The document detailed the report of three deaths and four hundred

safety incidents between November 2003 and July 2007 attributable to the mismanagement of

patients receiving oral SACT - namely incorrect dosage, frequency, quantity and duration. There is

also likelihood of a substantial number of unreported incidents. Immediate policy changes were

actioned within the NHS whereby the treatment of PWC receiving oral SACT was to be held in the

same regard, and using the same standards of practice as that for people receiving IV therapy in

relation to prescribing, dispensing and administration.

The National Chemotherapy Advisory Group Report (NCAG, 2009) aimed to ensure quality and safety

in chemotherapy services in England. The report recommended that, “[…] each chemotherapy

service should ensure that exactly the same process of care is used for oral chemotherapy as in the

case for parenteral chemotherapy” (National Chemotherapy Advisory Group NCAG, 2009, P. 24).

This recommendation has been echoed by standards in The Manual for Cancer Services (NHS

Improving Quality, 2014).

While an array of recommendations are available specifically addressing oral SACT, the

Chemotherapy Patient Experience Survey (Quality Health, 2014, P. 4) - a survey run within the

context of the NHS in 2013 – commented:


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“[…] there appears to be a difference between the care accompanying intravenous versus oral

chemotherapy in that patients receiving intravenous treatment were more likely to be offered

a written treatment plan and information, a discussion as to side-effects and information

concerning the telephone information service.”

To achieve optimal benefit from oral SACT, its administration requires continued patient monitoring

and service improvement to ensure safety. One strategy to ensure best practice is the provision of

patient education (Hartigan, 2003; Halfdanarson and Jatoi, 2010). Following the conduct of an

international survey of patients receiving oral SACT, Kav and colleagues (2008) highlighted that the

amount and quality of patient education directly affected the way the patient took their treatment.

Information plays an essential role in helping individuals make informed decisions (McPherson,

Higginson and Hearn, 2001); thus not only has a role in safe treatments, but also in informed

consent. With correct information, it is possible to improve outcomes by adopting a preventative

approach, for example PWC having the knowledge of when and how to react to events.

Prior to commencing treatment of an oral SACT, PWC must be given a great deal of information. The

structure and delivery of that information is dependent on the patient and provider. Guidelines

produced by BOPA (2004) may facilitate the delivery of education.

The delivery of education about oral SACT can vary, but should always be individually-tailored to the

patients’ needs (Oakley, Johnson, and Ream, 2010). In practice, education for patients receiving IV

therapies is an ongoing process and is embedded across the patient pathway (Macmillan Cancer

Support, 2012). Designated oral SACT clinics aim to provide care to PWC prescribed oral SACT to

help them manage the complexities associated with administration and ongoing treatment, such as

side effect management (Neuss, et al., 2013). Health professionals should be aware of the impact a

cancer diagnosis has on an individual’s psychological function, which might affect an individual’s

ability to both understand and or retain information (Schumacher et al., 2013).

A survey of 557 oncology nurses in outpatient settings in the United States highlighted that oral

SACT practices raise safety concerns (Roop and Wu, 2014); throughout the country oral SACT

administration practice varied, with only 51% of the practices surveyed having specific policies and

procedures to manage oral SACT. Within the UK, no national survey has yet been completed to

identify oral SACT practices; however Williamson (2008) reported a survey of 56 cancer pharmacists

that had a response rate of 52%. All respondents expressed a keen interest in being involved in oral

SACT management, but the survey also highlighted a need for specific standards and the findings

supported the NPSA safety alert (NPSA, 2008).


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In the UK, the ‘Manual for Cancer Services Chemotherapy Measures’ governs practice (Department

of Health, 2014) and recommendations on practice from BOPA (2004) and UKONS (Oakley, C. et al.,

2010) guide practice in the administration principles for oral SACT. Despite an array of published

health policy surrounding the care of patients taking oral SACT, no benchmarking standards have

been recommended. Guidance from the NCAG (2009) detail PWC should receive the same process

of care when taking an oral SACT as compared to patients receiving an IV SACT. While this guideline

is clear, healthcare systems need to provide the same process of care to patients receiving very

different treatments and address the challenges previously discussed for PWC receiving oral SACT.

With variance in models of care, there is a need to identify what method should be regarded as best

practice in terms of patient experience and logistical delivery.

The author of this report has recently completed a PhD investigating the patient experience of

receiving an oral SACT and the views of key health professionals involved in the safe delivery of oral

SACT. This PhD study used mixed methods to investigate an oral education clinic, used in the United

Kingdom. Results have not yet been formally published, however the study was limited to a setting

within the NHS and consider patient and health professional experience from a UK perspective. The

rationale for this WCMT Fellowship was to investigate the safe care practices employed in America

and Canada who have demonstrated (in the published literature) varied and robust practice

examples of new and differing models of care for this patient population.

2.0 Aims and objectives

The following aims and objectives were carefully created to help influence the design and delivery of

cancer services for people affected by cancer in the UK. When healthcare interventions are reported

and publicised they are limited by words and rarely report what hasn’t been effective. Meeting

experts in the field and observing practices will demonstrate what has and hasn’t worked, but

crucially how successes can be implemented and adapted. It is hoped, through conversation and

observation, high quality practices can be shared, and future research directions highlighted.

• To investigate safe care practices for patients receiving oral SACT in America & Canada.

• To learn from the experiences of health professionals and health researchers in America &

Canada about the best way to provide patient-centred care in the delivery of oral SACT.

• To identify the elements of nursing practice that facilitate safe, effective and acceptable care

for patients receiving oral SACT.

• To develop recommendations for the safe management of oral SACT informed by examples

of good practice in America & Canada.


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• To highlight key areas for consideration for future research globally.

3.0 Fellowship methods

In order to meet the objectives of this Fellowship, three types of method were employed: written

research, dialogue and observation.

Written research: in order to fully understand the problems facing oral SACT provision, both

nationally and internationally, I was required to be fully up to date with the current evidence base. I

therefore read widely around the topic of oral SACT including reported patient experience and

health professional perspectives. The professionals I made contact with had often published

research around the topic area, I therefore familiarised myself with both their findings, but also the

findings they had referenced including their own local health policy. Further, as the model of

healthcare in America differs significantly from the UK, it was important as a Fellow I had strong

background knowledge into the commissioning and governance of healthcare interventions in

America. The healthcare model in Canada, while similar to the UK in many respects also had

differences of which I needed to be aware of.

Dialogue: both prior to, and during my travels I had continued and sustained dialogue with a series

of collaborators. Primarily, discussions began with the Oncology Nursing Society, Pamela Ginex to

identify realistic objectives and how these could be achieved. This initial dialogue was essential as it

directed both my enquiry, but also Pamela to whom I should best get in contact with, and arrange a

visit. Dialogue was the primary source of data collection for this Fellowship. Through in-depth

discussions, often over a series of days, I was able to learn from individuals and question their

practices, learning about the techniques and nuances employed to deliver, or research safe care.

Observation: through observational dialogue, I was able to have in-depth discussions with a range of

health professionals and academics in their own clinical or research environment. By visiting these

individuals and respective institutions, I was able to directly observe many of the clinical areas where

oral SACT was both prescribed and delivered. Through observation, I was able to identify and

contextualise the techniques, layout and practices of health professionals and researchers in

delivering safe oral SACT.

4.0 Itinerary

Due to work commitments, the Fellowship was divided into two legs of travel, both two weeks in

duration. The first leg took place between 13th -28th October 2018 and second leg between 22nd

February – 3rd March 2019. Table 1 highlights the country/state visited, the primary contact and


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their affiliation. For each of the visits listed, the primary key contact arranged a series of activities.

In total across all eight visits, I visited eight clinical areas, met with six health researchers, delivered

four guest lectures and presented at one national conference. All activities included time for

reflection and note generation taking place during weekdays, with weekends used as rest time to

immerse myself in the local culture.

Table 1. Detailed itinerary for legs one and two

Leg

on

e

Country Visited Affiliation

USA: Boston, Massachusetts

Anne Elperin, Nurse Clinical Specialist

Dana Farber Cancer Institute

Dr Joseph Greer, Clinical Director of Psychology

Center for Psychiatric Oncology & Behavioral Sciences at the Massachusetts General Hospital Cancer Center.

USA: Grand Rapids, Michigan

Professor Sandra Spoelstra, Associate Professor

Grand Valley State University.

USA: Louisville, Kentucky

Mary Anderson, Oral Chemotherapy Nurse Navigator

Norton Healthcare

USA: Salt Lake City, Utah

National Community Oncology Dispensing Association, Inc.

Annual NCODA 2018 Fall Summit, invited speaker.

Leg

two

USA: Palo Alto, California

Elizabeth Bettencourt, Oral Chemotherapy Nurse Navigator

Palo Alto Medical Foundation

Canada: Toronto, Ontario

Dr Doris Howell Princess Margaret Cancer Centre

USA: Manhattan, New York

Dr Pamela Ginex Oncology Nursing Society


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5.0 Findings

Due to the vast number of individuals visited and activities completed, the findings from this report

have been summarised thematically rather than per visit. Where key content from a specific

individual or area is referenced, this is made explicit in the reporting.

5.1 Models of care for patients receiving an oral SACT

5.1a Gaining access to an oral SACT

In America the model of healthcare is quite different to the United Kingdom, whereby it is privatised.

It would not be uncommon for an individual, newly diagnosed with a malignancy to research the

best oncologists/haematologists online and choose their own provider. A positive of this, is the

reduction of the post-code lottery i.e. your geographical home does not necessarily impact on your

access to treatments or standards of care. However the disadvantage is that your choices of

treatments and consults available to you, is often guided by your health insurer – for example they

might mandate certain groups of hospitals only, with associated different costings.

The challenge of privatised healthcare in the context of oral SACT in America primarily comes down

to cost. The cost of these medications is significant. New on the market, or complex drugs, can cost

in the region of thousands of dollars, for a one month supply, and the duration of treatment is not

necessarily known – an individual’s health insurer is likely to be paying hundreds of thousands of

dollars for treatment, within a very short space of time. Further, health insurers will often have a

‘co-pay’ clause, whereby the individual is required to contribute a small percentage of the cost e.g.

1-20%. In discussions with health professionals, this could often look like a monthly cost of up to

$2,000 for some individuals. Whilst some individuals might be able to afford this monthly cost,

many cannot. The reality is for many, that the treatment is simply not an option. In this scenario

there are some options available to individuals, such as access to grants or other local community

funding initiatives, but it is challenging to access this money, and it is often not a permanent

solution. Healthcare providers mitigate this challenge by offering support, often through ‘oral

oncology nurse navigators’ a role which I will discuss in this report in more detail later.

Similar to the UK, not all pharmacies had the ability to dispense oral SACT. In the USA only specialist

pharmacies could dispense the medication, further, the health insurer will dictate which pharmacy

can dispense the medication, secondary to cost. In some instances, oral SACT is therefore delivered

by mail order as the pharmacy might be significantly distanced from the individual, or the hospital

they are attached to. Some healthcare providers had established a specialist pharmacy within their

own hospital to enable ease of dispensing and co-ordination of prescription and financing and some


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hospitals were working towards developing their own specialist pharmacy on site. Where a

specialist pharmacist was closely available, this was seen to facilitate better integrated care as the

health professionals co-ordinating the treatment could easily access the pharmacists and track the

medication process.

On average, it takes several weeks for all individuals to gain access to their medication, irrespective

of health insurance cover or personal finances. This wait, and for many, a process of repeated

financial applications adds a significant burden of stress to people with cancer who are waiting for

their life prolonging or curative treatments. Gaining access to an oral SACT, is therefore the first,

and perhaps the biggest challenge to commencing treatment.

5.1b The “Chemo Teach”

The primary means to ensure safe treatment with oral SACT is patient education – ensuring the

individual taking the treatment is fully aware of the when to take their medication, how to take their

medication, what to do in the event of side effects or problems which might arise and finally how to

safely store and manage their medication at home. Not only is the delivery of patient education

vital, but the assimilation of such education. The term ‘chemo teach’ was widely used by most

health professionals in the USA and Canada.

All practices concerning patient education of oral SACT in America and Canada were guided by the

ASCO/ONS standards (Neuss et al., 2013). These guidelines were referred to by all health

professionals and were clearly embedded in patient education initiatives with all professionals I

spoke to having a grounded working understanding of these standards. I was impacted by the ready

knowledge of the health professionals who clearly demonstrated a close working to these guidelines

– to see health policy and governance have such a working impact on the daily practices of these

professionals was both inspiring and reassuring.

Across all models of care I observed, patient education was delivered by nurses or pharmacists, who

were often attached to the specific prescriber. For example, in one hospital, the doctor who

prescribes the medication has their own team of health professionals, and therefore it is the role of

the advanced nurse practitioner within that team to deliver patient education to individuals

commencing an oral SACT. In other clinics, an oral oncology nurse navigator would co-ordinate the

oral SACT regimens and deliver the education.

Education was in most cases delivered face to face, in a clinic setting. All professionals described the

use of visual aids, written information and providing ample opportunity for patient questions.

Telephone education was discussed with the professionals, but overwhelmingly the response was to


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only use telephone education if there were access issues i.e. the patient lived very far away, or had a

problem that prohibited them attending the hospital – telephone education was discouraged but

viewed as better than no education and therefore used in exceptional circumstances. Face to face

education was preferred as it provided the health professionals enhanced opportunity to develop

relationship with the person with the cancer and ascertain their level of understanding and

assimilation. Further, with all organisations having embedded systems of follow-up care, both

health professionals and patients preferred the ability to put a ‘face to the name’ from this primary

educational contact.

5.1c Follow-up care

Each organisation I visited, and all health professionals I spoke to referred to patient follow-up as a

key feature of safe oral SACT provision. Follow-up care was regarded as essential because in their

experience, patients would often have a series of questions to ask about their medication, have new

side effects developing they might not be managing correctly and it also provided an opportunity for

the health professional to both reinforce patient education and also assess adherence and issues of

day to day management.

One specialist nurse recalled phoning a gentleman at home two weeks into his treatment, on

enquiry into his health condition the gentleman reported he was glad she called as he was “shi**ing

pee” – health advice was given immediately including a temporary drug holiday to allow his bowel to

recover, a medical review including blood tests to assess for dehydration and renal function, then

reintroduction of the drug a few days later at a slightly lower dose. This is a prime example of an

individual over-adhering to treatment, whereby the oral SACT was doing more harm than intended,

and if allowed to continue unreported, could have been fatal. A simple telephone call to the

gentleman, enabled the health professional to deliver advice, manage the side effect and get the

individual back onto treatment at a later date. Without this telephone call, this gentleman’s

outcome might have been significantly different early on into his treatment with oral SACT. Further,

the follow-up call provided an opportunity to re-educate the individual on the importance of

initiating contact with healthcare providers, highlighting the reasons why not reporting side effects,

could be seriously detrimental to the individual’s health.

Recommendation 1:

All healthcare providers in the UK should implement a specific model of care to provide patient



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Methods of follow-up were primarily conducted by nurse specialists or pharmacists, often

completed by telephone. Calls were typically initiated close to the commencement of treatment,

several weeks following treatment, and repeated at the start of future treatment cycles.

Interestingly, there was no standardised time for follow-up calls, and implementation of follow-up

differed by institution, but also within institution dependent on the oral SACT itself. The model of

care used was oral SACT dependent, and this was often prescribed by the oncologist or

haematologist. Some oral SACT therefore required telephone calls on days 2, 7, 14 and 21, whilst

other oral SACT required calls on days 7 and 14 only. The key characteristic here was that oral SACT

were different types of drugs, with different types of side effect, with different onset times of side

effects – therefore a standardised model of care was not appropriate, rather a standardised model

of care dependent on the individual drug. To manage this, all healthcare providers described

working groups or committees who decided together what type of follow-up was required for each

individual drug used, and follow-up activities were ‘prescribed’ as part of the patient’s treatment

plan, similar to a drug itself. Practically therefore, when a doctor ordered a medication, they

subsequently ordered the follow-up contacts enabling a nurse, pharmacist or other healthcare

professional to diarise, or ‘prescribe’ future contacts.

This method of working proved useful and efficient, clarifying exactly what was required on a drug

specific basis. To my knowledge, within the UK, few examples of follow-up care regarding an oral

SACT have been reported and there is no standardised practice. While delivering follow-up care has

a financial impact on a healthcare organisation, the potential cost-benefit of preventing hospital

admissions or treatment of side effects which could have been prevented needs to be explored.

5.1d The Oral Oncology Nurse Navigator (ONN)

Across all institutions I visited in America and Canada, two key interventions featured within all

models of care: patient education and follow-up. All discussion and critique of these features with

the health professionals highlighted that these were essential aspects of care to ensure patients

were informed on how to take their medication safely and also to confirm they were managing their

treatment within the context of their own life.

Recommendation 2:

All healthcare providers in the UK should implement an oral SACT working group or governance

committee to streamline a drug specific, patient pathway


18

Listening to and observing the various patient pathways, and certainly within the USA where

patients had many obstacles to face before gaining access to their oral SACT, I was struck by the

amount of organisation required from the patient perspective. Patients were required to juggle

appointments with multiple different health professionals, departments and sometimes providers;

they had a significant volume of paperwork to complete and finally

they had to actively manage their oral SACT prescription not as a

singular prescription, but often on a monthly basis. Considering this

workload within the emotional context of a new cancer diagnosis or

oral SACT treatment, the burden to PWC appeared to be significant. I

was not alone in this observation and all health professionals shared an

empathy and understanding for the administrative, financial and emotional toxicities associated with

a cancer diagnosis in the USA. In essence, to safely manage an oral SACT, the patient is required to

act as a ‘project manager’.

To assist patients in managing this, a new role, described as the ‘Oral Oncology Nurse Navigator’

(ONN) was designed to help guide and support PWC requiring treatment with an oral SACT

(Anderson et al., 2017). I had the privilege of spending significant periods of time with two of these

health professionals from different states within the USA.

The role of the ONN is multi-faceted and requires a

great deal of organisational skill. Primarily, the ONN

had a role in the safe facilitation of oral SACT therapy,

their role commencing at the time of prescription and

continuing throughout the patient’s journey (Figure 1).

Primarily, the ONN achieves continuity in care – the

patient themselves has a key contact who can help

steer them through a complex health system, assist

with financial assistance and offer professional and

clinical advice on how to manage the treatment and its

associated side effects through continued contact.

The ONN, as the title suggests, serves as a navigator

and guide, not only for the patient, but also the

respective health providers. The ONN’s I met with shared

about their role in co-ordination, liaising with clinicians

across the whole multidisciplinary team including doctors,

Meeting two Oral Oncology Nurse Navigators; Salt Lake City, NCODA Conference

To safely manage

an oral SACT, the

patient is required

to act as a project

manager


19

specialist nurses, pharmacists, pharmacies, social workers and drug companies. The role of the ONN

provided high quality communication across a spectrum of health professionals, having a direct

impact on not only patient experience (reducing the need for the patient to co-ordinate this

themselves) but also patient safety due to their clinical skills. Often, it would be the ONN who would

deliver patient education and implement some telephone follow-up calls. In these scenarios, the

ONN could couple organisational skill with clinical reasoning, providing safety nets for individuals

who might be experiencing significant treatment toxicities. As Anderson et al (2017) comment,

“the end goal remains the same: to provide a safe nurturing environment for patients taking

chemotherapy – regardless if it is in the clinic or home setting”

Within the UK, the role of the clinical nurse specialist (CNS) is widely embedded, with organisations

often having several site specific CNS roles e.g. colorectal cancer CNS, breast CNS, cancer of

unknown primary CNS. The role of the CNS is widespread and often varies from institution but

primarily is focused on ensuring safe treatments, co-ordination of care, emotional support and a

point of contact within an often complex hospital system. Nationally, the role of the CNS is well

recognised as an integral aspect of high quality cancer care (Department of Health, 2007; Oakley et

al., 2010; Donald et al., 2014) and findings from this Fellowship support their continued and

sustained role. The challenge however is in expanding this role, or translating the role to the context

of the individual receiving oral SACT. From my observations of the ONN role, it is my belief that

cancer services within the UK should develop and implement an oral SACT clinical nurse specialist to

drive forward new models of care, safe patient interventions and a standardised, governance

approach to safe oral SACT management within their organisations.

Recommendation 3:

UK health providers should consider implementing a new role: the oral SACT clinical nurse

specialist


20

Role of the

oral

Figure 1: A generic patient pathway

Oral SACT prescribed

Oral SACT acquired

Patient education /

“Chemo Teach”

Follow-up care

Sustained & safe oral

SACT administration

Internal processes to

support patient to fill oral

SACT prescription

Education delivered by

nurse or pharmacist,

following ASCO/ONS

guidelines

Follow up interventions

prescribed e.g. telephone

calls days 3, 7, 14, 21, then

2-4 weekly

The

Ora

l On

colo

gy

Nu

rse

Nav

igat

or

The

Ora

l On

colo

gy

Nu

rse

Nav

igat

or

Co

nti

nu

ity

of

care


21

5.2 The challenge of adherence and toxicity management

Safe and effective treatment with an oral SACT hinges on PWC taking the treatment when they

should, in essence, adhering to the treatment protocol. Within the wider literature surrounding oral

SACT, adherence to treatment has been reported with mixed views. Under-adherence (not taking

the right amount of tablets, or missing doses) has been reported in some studies as ranging from

20% to 80% (Spoelstra and Given, 2011) while over adherence (taking too many tablets, or taking

tablets when not indicated e.g. alongside severe side effects) has also been reported (Mayer et al.,

2009).

Much of my discussion with the array of health professionals I encountered focused on how do their

patients adhere to their treatments, but also how do they manage treatment related toxicity.

Overwhelmingly, all the health professionals I met on my Fellowship, both clinical and academic,

shared the view that adherence to oral SACT did not appear to be a main concern. Patients were, on

the whole, taking their medications as prescribed. Few health professionals could detail examples of

patients not taking their medications as prescribed, or intentionally non-adhering. Through

conversation and discussion, I explored the potential reasons for this. The impact of a cancer

diagnosis and threat associated with a potentially terminal illness was viewed to have a direct impact

on how individuals viewed their treatment and their subsequent medicine taking behaviour. The

health professionals shared that their patients viewed these medications as a life line and therefore

secondary to the importance placed on the medication, would rarely forget, or would not

intentionally withhold the drug. One health professional recalled a patient discussing taking their

oral SACT as, “handier than a pocket on a shirt”. Further, the cost of the medications themselves,

and the strenuous process that many went through to gain access, placed a significant level of

importance on the drug. Adherence, was therefore rarely an issue. The challenge however was, and

remains, in measuring adherence. All health professionals I met with measured their patient’s

adherence using patient self-report i.e. on telephone follow-up calls they would ask the individuals

whether they were taking their medication regularly, and whether there had

been any episodes or periods when they didn’t take the medication. While

feasibly, this is the best method to assess an individual’s adherence to

medication, it relies solely on patients detailing an honest account. However,

considering the reasons detailed previously, it is theoretically understandable

why PWC would consider adherence a priority and subsequently take the

treatments as indicated.

Oral SACT is

‘handier than

a pocket on a

shirt’


22

Where concern did arise, again across all health professionals encountered, was in the ability of a

patient to identify when to stop taking their medication: over-adherence. As previously discussed, it

is vital for a patient to act promptly on side effects experienced to prevent hospital admissions or

serious adverse events. However, the psychology attached to the experience of cancer and its

treatments might have an impact on an individual’s medicine taking behaviour. I discussed with

multiple health professionals the challenge for PWC who do not have a medical background in

identifying what was normal and what was abnormal. When delivering patient education, the health

professionals clarify that a patient might experience diarrhoea, or a sore throat – but the question

arose as to whether the patient would be able to identify at which point the severity of the side

effect warranted report or further investigation. For example, an individual might be expecting

diarrhoea as a side effect, and henceforth experience diarrhoea. The health professional would not

be concerned necessarily if an individual had 2 extra stools per day, however if they were having an

episode of diarrhoea every hour, this would quickly become a concern. The challenge in safely

managing oral SACT, is having patients that understand when to escalate a problem. As previously

discussed, the ONN on a routine follow-up call identified a gentleman who was having severe

diarrhoea – as a result of that follow-up call changes were made and the side effect managed, but

without that call there could have been serious adverse outcome.

Within the USA and Canada, across the eight clinical areas I visited and health professionals I met

with, toxicity management is guided by effective patient education and continued telephone follow-

up calls. This provided me with the opportunity to share some practice from the UK. The UK

Oncology Nursing Society (UKONS) had developed a toxicity grading scale which is widely used by

health professionals throughout cancer care services in the NHS. This tool is also being developed

for use by general practitioners and health professionals working in the community. As a result of

this Fellowship, I have been able to share the impact of this grading scale and establish an

international link between UKONS and ONS to share practice and develop projects moving forward.

5.3 The use of technology in healthcare

It was very clear throughout many of the hospitals I visited in America, that modern technology was

deeply embedded throughout the patient pathway. All areas I visited used electronic prescribing,

Recommendation 4:

All NHS providers should ensure they provide patients with a tool to assess their own experience of

side effects. An excellent example is the UKONS traffic light toxicity grading scale.


23

maintained clinical records using technology and rarely used paper reporting methods to record

patient data.

The use of technology, hugely impacted on both the health professional experience, whereby their

tasks could be completed quicker, but also the patient, whereby mixed messages were minimised,

and all health providers informed in their care could access the relevant record. Several clinical

areas were also using applications available for download on a patients Apple or Android device –

within the apps patients could monitor their latest results, communicate with health professionals,

complete self-assessments in relation to their experience of side effects and receive real-time

medical advice.

Specifically to the care of patients receiving oral SACT, technology was widely used to help co-

ordinate and manage treatment and care interventions. For example, when a medication was

prescribed, all subsequent care interventions were also prescribed. The ONN would then be fully

aware that patient X required Xmg of drug X, they would require blood tests X, Y and Z on dates A, B

and C. The ONN could then use this prescription as a tool to organise their own caseload of patients,

enabling one professional to co-ordinate the care of hundreds of patients safely. Without an

efficient, embedded technological process, this would not be possible, to the detriment of both the

health professional and the patient. The databases used to store patient records were all able to link

together whereby all members of the multidisciplinary team could make additions to the patients

record and communicate with one another.

While all technological tools will have their own associated limitations, it was clear in the hospitals I

visited, and through discussion with the health professionals I encountered, that technology enabled

safe and efficient patient care. While the UK is certainly moving forward with embedding

technology in practice, this remains fragmented, with systems that do not communicate well across

the continuum of healthcare providers, limiting patient safety and health professional experience.

5.4 The challenge to the UK and National Health Service

Safe oral SACT provision requires an informed patient who is competent to store and handle their

medication, but has the awareness to seek help at the right time. In essence, safe oral SACT

provision does not solely rely on an individual receiving high quality patient education, but rather

Recommendation 5:

The digital agenda should be the top priority for the NHS, ensuring all NHS providers fully embed



24

said individual having the capability to self-manage their care. A highly trained, highly experienced

nurse or pharmacist might deliver theoretically flawless education, yet safe oral SACT practice

requires the patient to have assimilated this education and be activated to self-manage their care

appropriately. The focus therefore moves from identifying the best means to deliver patient

education, but rather identify strategies to support individuals in the long term with their treatment

regimen.

To my knowledge, few examples of standardised, established follow-up methods have been

reported in the UK. At present, it appears follow-up with oral SACT is often patient initiated or

completed intermittently by clinical nurse specialists on an ad-hoc basis – such follow-up is

dependent on the appropriate staff having the resource both financial and in time, to implement

such measures.

Having observed practices in America and Canada, all institutions had standardised protocols for

implementing follow-up care. The level and intensity of follow-up was guided by the individual drug

requirements, or prescriber instructions. Through established follow-up procedures, an added

element of patient safety was governed through regular contact – the individual patient was

therefore supported to self-manage. For the UK and NHS therefore, the time has come to review

practice within each cancer centre dispensing oral SACT to ensure patients are not only assessed for

their ability to self-manage their care, but implement safety practices to ensure patients have ease

of access to the right health professional at the right time, but also the ability to recognise at which

point to seek further help and support.

While America and Canada demonstrated several areas of care that are progressive and supportive

for patients taking an oral SACT, the NHS does offer some significant benefits to PWC in the UK. The

range of oral SACT available in the UK is less than that of America and Canada, but the reason for this

is based on questions of efficacy – in short, the NHS would not

commission a treatment that demonstrated little clinical benefit; cost-

benefit analysis therefore guides implementation. While the media may

on occasion document inflammatory cases where individuals refused

medications, this is rarely a scenario where a high cost treatment would

have a significant impact on an individual’s outcome in relation to their

cancer. Compared to America and Canada, what the NHS does well, is provide ease of access to life

saving treatments without the concern of cost or finance to the individual – treatments often being

initiated within days. The cancer journey itself is of course subject to financial concern, but this is

rarely linked to an individual’s requirement to procure or pay for their treatment. The NHS is free

The NHS must

be protected

and preserved

at all costs


25

for all, this is a huge benefit to individuals who require treatment with an oral SACT and an asset to

the United Kingdom – it must be protected and preserved at all costs.

6.0 Conclusions, Recommendations and Personal Reflections

This Fellowship aimed to investigate safe care practices for people receiving an oral SACT through

observation and discussion with pioneering clinical and academic healthcare providers in America

and Canada. Several models of care were observed and through in-depth interview and discussion

with health professionals, a series of recommendations and actions identified for application to the

UK have been produced. America and Canada have both embedded established means of follow-up

and support for PWC taking an oral SACT, addressing issues of patient safety and improving patient

experience. The recommendations derived from this report and through these observations and

discussions have been created to have a practical, tangible output that NHS care providers can

consider, critique and implement.

6.1 Recommendations

#1 - All healthcare providers in the UK should implement a specific model of care to provide patient


While some models of care have been reported in the UK (Mawhinney et al., 2017) few examples

exist of a standardised intervention to support PWC receiving an oral SACT. Across America and

Canada all healthcare providers, whilst subtle differences were observed, all had developed a

specific model of care. All UK cancer services providing cancer care should immediately detail a

specific model of care to provide tailored, person-centred patient education to individuals receiving

an oral SACT. This model of care could be provided by a nurse or a pharmacist.

#2 – All healthcare providers in the UK should implement an oral SACT working group or governance

committee to streamline a drug specific, patient pathway

A specific, standardised model of care encompassing oral SACT should not be the focus, rather a

model of care that can be adapted to the individual requirements of different oral SACT and patient

needs and abilities to self-manage their care. By developing a working group, a governance group or

committee to oversee oral SACT delivery, each organisation can be held to account and the provision

of an appropriate model of care monitored.

#3 - UK health providers should consider implementing a new role: the oral SACT clinical nurse

specialist


26

The clinical nurse specialist has an invaluable role for PWC within the NHS. To my knowledge, no

cancer trusts to date have an oral SACT specialist nurse in post. Based on the role of the oral

oncology nurse navigator, the UK should consider the development of the oral SACT nurse specialist

who can oversee the clinical care for PWC receiving an oral SACT.

#4 - All NHS providers should ensure they provide patients with a tool to assess their own experience

of side effects. An excellent example is the UKONS traffic light toxicity grading scale.

Many of the ongoing challenges faced for both healthcare providers and people taking an oral SACT

is the ability to appropriately and promptly escalate concerns or experience of side effects, to

minimise adverse outcomes and sustain treatment with oral SACT. Tools should be developed, such

as the example of the UKONS triage tool, to assist non-medical background individuals to

understand the point at which they should seek help. Patients would not be required to report all

side effects, but they do require an ability to identify what side effect warrants report and

intervention. America and Canada also debated the best means to support individuals with this self-

assessment; the UKONS triage tool is the best tool available at present to support this level of self-

management.

#5 - The digital agenda should be the top priority for the NHS, ensuring all NHS providers fully embed


All healthcare organisations I visited in America and Canada had well established and embedded

digital processes to support both patients and health professionals. Through technology, self-

management was promoted, organisational capabilities were enhanced, and ultimately, patient

experience and safety was improved. Whilst the NHS is working towards digital transformation, in

the age of 2019 this needs to be embedded more promptly and with top priority for the benefit of

both service users and providers.

6.2 Personal reflections

Having spent four weeks across the USA and Canada, meeting a vast array of individuals, I was most

struck by hospitality. The individuals I met were full of genuine joy, sharing their professional stories

and experiences but often also their personal life and the area where they live. Particularly, my four

days in Kentucky were exceptional. My host opened up her work place, her professional contacts

but perhaps most notably her home – welcoming me to family dinners and taking me to the

Kentucky races. The reason I highlight these experiences, is not to single out a solitary figure who

provided outstanding hospitality, but rather to demonstrate the nature of people who work within

oncology and haematology. The altruism, passion and commitment to providing the best quality


27

care shone through every individual I met. Words cannot describe the inspiring impact this had on

me. Cancer effects us all. With 1 in 2 likely to experience cancer first hand in their lifetime,

everyone has been touched with cancer in one way or another. With over 10 years experience in

the NHS working within the world of haematology and oncology I have always been inspired by my

colleagues and peers; the same was no different in America and Canada.

I have not reported much on supportive interventions for individuals with cancer in America and

Canada – for the primary reason that they are implementing similar initiatives as ourselves in the UK.

Cancer rehabilitation and supportive care interventions were hot on the agenda within all

organisations I visited. The struggles of the cancer journey were acutely understood, and similar to

the UK, efforts were made to provide health services that could meet all the needs of an individual.

This travel Fellowship has reminded me of the phenomenal health service we provide in the UK. A

discussion behind the politics and financial management of the NHS is beyond the scope of this

report, but needless to say, our NHS is so special, so unique and provides care that is free for all at

the point of service. We deliver high quality care, and we do this through a body of individuals who

despite the challenges, always strive to enable altruism, care and compassion to shine through every

contact. I am acutely reminded, that our NHS needs to be protected, valued, endorsed and

supported in every possible way. The learning, both personal and professional from this trip abroad

has been life changing, inspiring and challenging. A sincere thank you to the courageous and

pioneering individuals I encountered, but also to the Winston Churchill Memorial Trust for enabling

this once in a lifetime opportunity.

7.0 Dissemination and next steps

This report will be forwarded in its entirety to NHS England, NHS Improvement, Health Education

England, the National Chemotherapy Alliance Group and to the UK Oncology Nursing Society. It is

vital these organisations consider the findings from this report and recognise both the importance,

but also the urgency of establishing safe oral SACT care provision within the UK.

Given the dearth of literature available on safe practices on oral SACT provision I will also prepare a

manuscript for submission to a UK based cancer nursing journal to assist with disseminating the key

messages. Further, I will submit an abstract for presentation at a national nursing conference in the

coming year.

On return to the UK from my travels, I initiated email introductions between ONS and UKONS to

consider sharing practices regarding use of a toxicity grading scale. A skype call has already taken

place.


28

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https://www.quality-health.co.uk/surveys/national-cancer-patient-experience-survey

https://www.quality-health.co.uk/surveys/national-cancer-patient-experience-survey


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Relevant contact information

Michael Mawhinney; Twitter iammike03; email [email protected]

Oncology Nursing Society; https://www.ons.org/

United Kingdom Oncology Nursing Society; https://www.ukons.org/

Winston Churchill Memorial Trust; https://www.wcmt.org.uk/

Poster on display in the office of an oral oncology nurse navigator

mailto:[email protected]

https://www.ons.org/

https://www.ukons.org/

https://www.wcmt.org.uk/