Cancer Nursing Practice

Evidence and practice/service evaluation

Development, integration, and evaluation of nurse-led follow-up across five tumour sites, at a cancer unit in Northern IrelandSemple C, Lynas C (2017) Development, integration, and evaluation of nurse-led follow-up across five tumour sites, at a cancer unit in Northern Ireland. Cancer Nursing Practice.

date of submission 30 June 2017; date of acceptance 29 September 2017; doi 10.7748/cnp.2017.e1460Cherith Semple

Macmillan head and neck clinical nurse specialist/ Honorary Research Fellow, South Eastern Health

and Social Care Trust, Cancer Services, Ulster Hospital, Ulster University, Institute of Nursing &

Health Research, Belfast, Northern Ireland

Caroline Lynas

Macmillan service improvement lead, South Eastern Health and Social Care Trust, [?Belfast]

Correspondence

Cherith.Semple@setrust.hscni.net

Conflict of interest

None declared

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

We would like to thank clinical nurse specialists Martina Finn, Joanne Ogburn, Patricia Thompson,

and Paula Dempster, at South Eastern Health and Social Care Trust (SEHSCT), who were integral to

this service redesign and evaluation. We would also like to thank Dr Moyra Mills for facilitating the

focus group, and the staff of the SEHSCT safe and effective care department, for administering the

questionnaires and collating the findings.

Abstract

The traditional model of medical oncology follow-up clinics has been challenged in recent years, partly because it cannot meet the individual needs of the growing cancer survivor population. Greater personalisation of follow-up care is required to manage cancer survivors’ clinical, psychosocial, and practical care, and many organisations are attempting to achieve this through nurse-led follow-up services. This article describes a service development project, in a cancer unit in Northern Ireland, that developed, integrated, and evaluated nurse-led follow-up clinics for five tumour groups. Evaluation was undertaken through a focus group and surveys, and the article discusses the findings that suggest successful integration of nurse-led clinics requires comprehensive planning and preparation, including professional development, and risk stratification of patients, and that nurse-led clinics enhance continuity of care, and promote patient empowerment and self-management strategies. The article concludes that nurses can deliver cancer follow-up services effectively, and are well placed to provide comprehensive survivorship care for patients.

cancer, cancer nursing practice, living with and beyond cancer, nurse-led follow-up, survivorship

IntroductionAn estimated two million people in England are living with and beyond cancer (National Cancer

Survivorship Initiative (NCSI) 2013), and this number is projected to rise to 3.4 million by 2030

(Maddams et al 2012). Similar trends are reported in Northern Ireland (NI), with 63,000 people living

with cancer, and an expectation that this will increase to over 100,000 in the same timeframe

[Macmillan Cancer Support 2017]. This growing population of cancer survivors, many of whom have

co-morbidities, some of which are related to their cancer treatment, places a significant demand on

health and social care services. Further, while more people are surviving cancer, this does not mean

that they all are living well (Khan et al 2011).

The traditional model of oncology follow-up clinics has been challenged in recent years, due to

recognition that current systems cannot meet the demands of the ever-increasing cancer

population, and that many cancer survivors attending these clinics have unmet needs (Kent et al

2012). Further, research highlights a feeling of abandonment during the transition from cancer

patient to survivor (Davies and Batehup 2011). This is partly because traditional oncology follow-up

clinics focused mainly on detection of recurrence, and less on health-related quality of life (QOL)

issues (Jefford et al 2013). There is a need, therefore, for transformation of follow-up services for

people affected by cancer.

People’s needs, and situations, vary, therefore greater personalisation of follow-up care is

required to manage their clinical, psychosocial, and practical care effectively. There is increasing

emphasis on providing person-centred and risk-stratified follow-up care, supported by holistic need

assessments (HNAs), and individual care plans, and empowering patients to take a more active role

in their recovery (NCSI 2013). Within this context, many organisations are providing direct access to

nurse-led follow-up services.

Nurse-led care continues to expand, with the recognised extended role of nurses, combined with

the need to modernise health care services, and provide cost-effective care. Caird et al (2010) found

that nurse-led interventions, provided or led by nurses, positively affected management of patients

with long-term conditions, including cancer. The authors concluded that nurse-led care can be more

beneficial than medical-led care, in terms of physical outcomes, psychosocial aspects, and patient

satisfaction, and does not impair cancer patients’ long-term survival. Despite the rapid growth in

nurse-led cancer follow-up clinics, development has been ad hoc, and poorly evaluated (Farrell

2015), and there is a lack of evidence on how to develop effective nurse-led clinics, and demonstrate

meaningful improvement in service-delivery from professionals’ perspectives.

Transforming Cancer Follow Up (TCFU) was introduced in NI in 2010 [Northern Ireland Cancer

Network, 2010], and is the result of a strategic partnership between Macmillan Cancer Support, the

Health and Social Care Board, and the Public Health Agency. The aim of TCFU is to test new models

of cancer follow up across NI, focusing on improving the quality of patients’ aftercare experience,

promoting health and wellbeing, reducing inefficiencies in hospital follow up, and enhancing service

coordination and integration. Part of the redesign and transformation of follow-up cancer care at the

South Eastern Health and Social Care Trust (SEHSCT), one of the five integrated Health and Social

Care Trusts in NI, was the development and delivery of nurse-led follow up across five tumour sites.

Each year at SEHSCT, 2,200 new patients are diagnosed with cancer, and 2,600 oncology

treatments are delivered. This article describes a service development project which aimed to

develop, implement, and evaluate nurse-led cancer follow up, as part of a service redesign

programme. The objectives were to:

1.Develop and implement pathways for nurse-led cancer follow up across five tumour groups,

namely, head and neck, colorectal, prostate, haematology, and gynaecological.

2. Explore clinical nurse specialists’ (CNSs’) views of developing and delivering nurse-led cancer

follow-up clinics.

3. Determine patients’ views and experience of nurse-led cancer follow up clinics.

4. Ascertain consultants’ views of CNSs undertaking follow-up clinics, within their tumour-specific

cancer teams.

MethodA focus group and surveys were used to generate data for the evaluation phase of the service-

development project, which was led by a Macmillan service improvement lead, and CNS. This project

was approved and supported by the SEHSCT quality improvement department, called safe and

effective care. Data were collected between October 2016 and March 2017. The procedure, sample,

and data analysis are outlined separately for each objective.

Objective 1: development of nurse-led cancer follow-up serviceComprehensive planning was an essential part of the project, particularly in relation to the

advanced practice roles of the CNSs who would be leading the follow-up clinics, including clinical

assessment with examination for tumour detection, and ordering relevant investigations. It was

essential that the CNSs identified potential deficits in their skill and knowledge base, and structures

were put in place to support their professional development before the start of the nurse-led clinics.

During the development phase there was only one nurse per tumour group conducting the clinics,

and therefore no clinics were held during study and annual leave periods.

The Macmillan service improvement lead, and the trust’s cancer services manager, worked

alongside, and supported, each CNS individually, to develop and integrate the new model of follow-

up care for their tumour-specific group. The following framework was used to ensure the CNSs were

equipped for, and competent to undertake, these new roles:

Professional development. The CNSs undertook a health assessment accredited module at the

local university, and had advanced communication skills training.

Work-based learning. The CNSs were all senior nurses with more than three years’ experience

with their tumour group. Before commencing nurse-led clinics, each CNS worked alongside

tumour-specific medical consultants, which was an opportunity to gain knowledge about disease-

specific cancer management.

Professional and clinical competencies. CNSs’ professional competencies were assessed by the

cancer services manager using a schedule which included values and attitudes on professional

accountability, maintaining standards, and patient safety underpinning safe and effective nurse-

led clinics. The CNSs’ clinical competencies were assessed by senior, tumour-specific medical

consultants. Each CNS had a skills- and knowledge-based competency schedule, relevant to their

area of practice, which included skills in clinical assessment (history taking, physical examination,

assessing response to treatment, assessing toxicity), and knowledge of clinical management,

including ordering, and interpreting, relevant investigations. The CNSs were ratified to lead the

nurse-led clinics only when deemed professionally and clinically competent.

Documentation. Trust guidelines and protocols were developed for each tumour group, and these

were authorised by the senior management team.

Medical support. Face-to-face nurse-led clinics initially ran concurrently with medical clinics, to

ensure clinical support was available if needed.

Organisation infrastructure. This included set-up of clinic templates, physical location of clinics,

dictation devices, and secretarial support.

Risk stratification: Each tumour-specific team developed and agreed pathways that included risk

stratification, to identify which patients were lower risk, and therefore suitable for nurse-led

follow up. For example, the head and neck team defined lower-risk patients as those who had

reached two-years post-treatment and disease-free. The premise and necessity of risk

stratification in each tumour-specific team will be re-evaluated on completion of the project, but

it was necessary to include this at the start of the project to minimise barriers from medical staff,

increase CNSs’ confidence before they started the nurse-led clinics, and to manage capacity.

Each site-specific CNS embedded the following survivorship principles into their clinic:

Complete holistic needs assessment.

Monitor for disease relapse, and detection of new cancers.

Monitor for late-effects of treatment, provide high-quality advice, and/or signpost to relevant

services.

Health promotion.

Active engagement of patients in their own health and wellbeing.

Education on self-surveillance.

Ensure patients are aware of point of contact, and rapid access to specialist advice if required.

Improve waiting times.

Table 1 shows the format of the five, tumour-specific nurse-led follow-up clinics.

Table 1: Format of nurse-led cancer clinics for each tumour site

Tumour site Clinic format Risk-stratification criteria for

nurse-led follow-up (*shared care

between clinical nurse specialist

and consultant)

Grade of

clinical

nurse

specialis

t

Time allocated

for review

Head and neck

Face to face

Treated surgically

Two years’ post treatment (no disease relapse)

Band 7 20 min

Colorectal Face to face

Two years’ post treatment (stage 1-2)

Band 7 20 min

Prostate Face to face

Watchful waiting, active surveillance (*), raised PSA [Prostate Specific

Band 7 20 min

Antigen], negative biopsy, hormone treatment

Haematology Face to face

Two years’ post treatment

Band 7 20mins

Gynaecological

Telephone Six months (stage 1A grade 1 or 2) (*)

Band 7 20 min

The duration of each nurse-led clinic appointment was 20 minutes, compared to an average of 10

minutes in the traditional medical-led follow-up clinics. The number of patients attending the clinics

vary between two and five, depending on the needs, and clinical capacity, of each tumour-specific

patient group. Since the format of the gynaecological clinic is telephone-based, there is no physical

examination, but the following content is covered with the aid of a proforma:

Results of tumour markers.

Holistic needs assessment findings.

Signposting/referral as required, for example for counselling, incontinence adviser, or

psychosexual counselling services.

Education about signs and symptoms of recurrence.

Rapid access policy.

Objective 2: Explore the CNSs’ views of developing, implementing, and delivering nurse-led cancer follow-up clinics

A focus group, comprising of four CNSs who deliver the nurse-led cancer follow-up clinics, was

conducted by an experienced qualitative researcher working in cancer services, fully appraised, and

involved in TCFU in NI, but independent of the local cancer team. The second author provided each

CNS with written information on background, rationale, timing, and location of the focus group.

Ground rules about participants’ opinions, and confidentiality, were set at the start of the focus

group. A topic guide was devised with the following five broad topics:

Preparation and planning.

Key enablers during development phase.

Perceived benefits of nurse-led clinics.

Challenges confronted.

Effects and highlights of nurse-led clinics.

Detailed field notes were made by a management interim in cancer services, who was also

unknown to the CNS participants, who recorded quotes or important phrases, main points and

themes, for each question discussed, as well as inconsistencies and non-verbal information or

activities. The experienced qualitative researcher noted the salient points.

Immediately after the focus group, the group facilitator (the experienced qualitative researcher)

and the assistant (the management interim for cancer services), had a debriefing, and noted

emerging themes and interpretations. Soon after the focus group the field notes were reviewed, and

a draft report was produced, which included relevant quotes. The draft report was shared with the

CNSs participants for verification, accuracy, and resonance of the data. The findings were then

finalised.

A short self-developed questionnaire was also completed at the commencement of the focus

group to capture the CNSs’ demographic details.

Objective 3: Ascertain patients’ views and experience of nurse-led cancer follow-up clinicsA patient satisfaction survey was devised by two senior nurses with oncology, research, and

service development experience. Feedback on length, structure, and format was sought from the

five CNSs who deliver the clinics, and to ensure the questions were representative of their tumour

group. The final version of the survey comprised of 18 questions, and four subsections covering

demographics, care received, patient enablement to ‘manage your health’, and overall satisfaction

of the service and suggestions for improvement. The survey included open (n=4) and closed-ended

questions (n=14), to generate quantitative and qualitative data.

A live-status check was performed on all patients who attended the nurse-led cancer follow-up

clinics from September 2015 to August 2016, from which 210 potential participants were identified.

They were sent a copy of the survey in September 2016, with a cover letter highlighting that their

confidentiality would be maintained. This may seem a small sample size across five tumour groups,

but this service development project included one nurse per tumour group, each commencing a new

service for patients that were stratified as low-risk for disease relapse. Anonymity for respondents

was protected, as patients were not asked to include their names, and a free-post return envelope

was enclosed with the survey.

SPSS v 22.0 was used to analysis the quantitative data, and the qualitative data were presented

verbatim, grouped, and themed.

Objective 4: Ascertain consultants’ views of nurses performing nurse-led cancer follow-up clinicsAn online, anonymous survey was developed by the same two senior nurses, and questions were

reviewed and refined based on feedback from other CNSs involved in the project. This final survey

comprised nine questions, eight of which were Likert-style, and one of which was open ended, and

was administered through Survey Monkey.

All 17 SEHSCT consultants working with the five, site-specific CNSs delivering the nurse-led follow-

up clinics, were sent the survey to their trust email address. SPSS v 22.0 was used to analyse the

descriptive, quantitative data.

FindingsCNSs’ views of developing, implementing, and delivering nurse-led cancer follow-up clinics

Four of the five CNSs who lead the clinics participated in the focus group. One was unable to

attend due to a sudden family bereavement. All four participants were registered nurses for over 20

years, had worked as cancer CNSs for a median of 11 to 15 years, and had a BSc degree in nursing.

One CNS had a doctoral degree. They represented head and neck, haematology, prostate, and

gynaecology tumour sites.

Four broad themes were identified from the focus group data, essential planning and preparation

required, challenges to overcome, key enablers, and benefits of the new service. These are discussed

below.

Essential planning and preparation required

Participants considered professional development, in the form of undertaking an accredited

health assessment module, and having in-depth and up-to-date knowledge on managing the site-

specific disease, as an essential part of the planning phase. They also reported the need to gain skills,

and to feel competent in conducting relevant physical examinations for detecting recurrence. This

included having the opportunity to shadow medical consultants, and undergo a period of

observation and feedback.

Another important facet of the planning phase was to agree supervision and mentoring from

medical consultants when starting the clinics, and ensure risk-stratification was incorporated for

patients in lower risk categories.

The planning phase enabled collation of essential documents, including trust guidelines, written

information for patients, and letter templates, and the participants reported the need to agree on

physical environment and resources, including clinic rooms with the necessary equipment, and

administrative support for setting up clinic templates, booking clinics, and typing letters. Participants

advocated that CNSs should consider each of these components before establishing nurse-led cancer

follow-up clinics.

Key enablers

These were identified as CNSs demonstrating a passion for, and commitment to, service redesign,

support from medical consultants as champions of change, support from management in cancer

services, having an experienced and skilled workforce to undertake nurse-led clinics, and strategic

drivers, such as TCFU in NI, and the NCSI in the UK.

Challenges to overcome

The most common challenge identified by the participants was lack of secretarial support, which

resulted in an unnecessary workload, for example allocating appointments and retrieving charts.

This is being addressed, and an administrative support worker is being recruited. Some participants

identified resource issues, such as lack of clinic rooms, and suggested that more planning time was

required.

Another challenge was managing additional workload, which for some CNSs meant reconfiguring

their job plan, with less available time for direct support of patients and families in the inpatient

setting. Some CNSs shared that engagement from medical colleagues was initially problematic, and

this was centred around their perceived lack of clarity about legal responsibility for medical clinicians

if recurrence was undetected by a CNS. Inequity also existed as some of the CNSs had completed

additional training, enabling them to request imaging investigations such as CT and ultrasound scans

within agreed protocols.

Participants felt strongly about maintaining the ‘essence’ of nursing in the nurse-led follow-up

clinics, especially if the clinics were perceived as a way of meeting waiting list targets. There was a

consensus that this new model should demonstrate added value for patients, with a holistic, person-

centred approach, and a focus on survivorship.

Finally, some participants said they lacked confidence initially, but that supervision and

professional support improved this.

Benefits of nurse-led cancer follow-up clinics

The participants considered that delivering nurse-led clinics added to their professionalism and

job satisfaction. Before attending the nurse-led clinics, patients complete a holistic needs

assessment, and the CNSs highlighted the value of this to identify unmet needs, and enable timely

referral to other members of the team, such as physiotherapists, psychologists, or dietitians. Longer

clinic appointments provided additional time to address patients’ psychosocial needs, and educate

them about disease surveillance, and health promotion. They also reported improved continuity of

follow-up care, due to seeing the same CNS at review appointments. Finally, the CNSs perceived

that patients were generally seen on time, and there was a reduced waiting time, compared to the

traditional model of follow-up care.

Patients’ views and experience of nurse-led cancer follow-up clinics114 surveys were returned, giving a response rate of 54%. Findings are reported under the four

subsections of the survey.

Participant demographics

Table 2 shows the participants’ demographic details.

Table 2: Demographics of patients who completed the patient satisfaction survey

Gender Male = 59 (53%)

Female = 53 (47%)

Age 45 and under = 2 (2%)

46 - 60 = 22 (20%)

61 - 75 = 50 (45%)

over 75 = 37 (33%)

Tumour site Head and neck = 11 (10%)

Colorectal = 29 (26%)

Prostate = 28 (25%)

Haematology = 17 (15%)

Gynaecological = 26 (23%)

Care and information received

All patients attending the nurse-led clinics completed a validated HNA tool. Those with head and

neck cancer completed a disease-specific tool, the Patient Concern Inventory [Rogers et al 2009),

while those in the other tumour groups completed the Cancer Concern Checklist [Macmillan Cancer

Support 2017). The nurse-led cancer follow-up clinics were conducted face-to-face in outpatients

(n=101, 89%), apart from the gynaecological service (n=13, 11%) which was telephone based. Of

those who had face-to-face follow-up visits, three-quarters (n=60, 74%) reported they had a physical

examination as part of their review.

Most respondents reported that they discussed previous treatment (n=88, 96%), results of blood

tests or investigations (n=91, 93%), current physical problems (n=87, 94%), new symptoms (n=83,

94%), further planned investigations and appointments (n=87, 96%), and how to contact the

specialist service between formal review appointments if problems arise (n= 93, 95%), during the

follow-up session.

Managing your health (patient enablement)

Participants were asked to identify the three most frequently reported cancer-related concerns,

out of a list of 15 items, that they sought advice on during their nurse-led clinic appointments. The

most frequent concerns were fear of the cancer returning (n=33, 38%), tiredness/fatigue (n=27,

32%), and ability to manage day-to-day activities (n=22, 26%).

There was an emphasis on promoting self-management during the follow-up visits, which is

shown in Table 3, and most participants were given adequate information to enable them to

understand their illness, keep healthy, cope and adjust to their cancer, and access their specialist

team.

Table 3: Support and information provided at nurse-led follow-up clinic to enable self-

management

Yes

n= (percentage of those who

answered the question)

No

n= (percentage of those who

answered the question)

Understand your illness, including the side-effects of treatment

88 (98%) 2 (2%)

Keep yourself healthy 100 (99%) 1 (1%)

Cope and adjust to life after a cancer diagnosis

87 (98%) 2 (2%)

Access your team if you have a cancer-related concern

86 (95%) 5 (5%)

Access support services, such as counselling, benefits advice

57 (86%) 9 (14%)

When respondents were asked how attending the nurse-led clinic affected their confidence in

managing their health, the results were overwhelmingly positive (Figure 1).

Figure 1: How attending the nurse-led clinic affected patients’ confidence to manage their health

Very co

nfident

Fairly co

nfident

Unsure

Not very

confident

Not at a

ll confident

0

10

20

30

40

50

60

70

80

No. o

f res

pond

ents

Consultants views of nurses-led cancer follow-up clinicsTen of the 17 medical consultants completed the online survey, giving a response rate of 59%.

Most (n=9, 90%) had no concerns or reservations about transferring patients from medical to nurse-

led follow-up, and identified disadvantages of medical-led follow-up, including overbooked clinics

(n=7, 70%), patients not seen on time (n=8, 80%), rushed consultations (n=6, 60%), and lack of

opportunity to address QOL issues (n=8, 80%). The consultants recognised that review clinics should

address a range of survivorship issues, and this is illustrated in Figure 2. Response options were yes,

no, and unsure (see below).

Figure 2: Important issues to address in cancer review clinics

Patien

t educati

on on self-m

anage

ment

Fear o

f recu

rrence

Phsyical

symptoms

Emotional s

ymptoms

Finan

ical co

ncerns

Healthy li

ving

Work-rel

ated iss

ues0123456789

10

Yes No Unsure

Consultants were asked what, if any, measures increased their confidence in the transition from

medical-led to nurse-led follow-up clinics, and their responses are shown in Figure 3.

Figure 3: Factors that increase consultants’ confidence in transition to nurse-led clinics

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10

The top two potential benefits of nurse-led cancer follow-up clinics, according to the consultants,

were more time to provide psychological support (n=8, 80%), and the opportunity for patients to

raise QOL issues. The two main disadvantages were greater potential for burnout of consultants

because they are managing a more complex patient caseload (n=5, 50%), and added demands

caused by providing support for CNSs leading the clinics (n=5, 50%). Half of the consultants were’

very satisfied’, and two were ‘satisfied’ with the current nurse-led follow-up provision in their area

of practice, while three were ‘unsure’. None of the consultants where dissatisfied, or very

dissatisfied with the nurse-led clinics.

DiscussionAt a time of straitened resources in healthcare provision, we cannot afford to make poor choices

in service delivery. Without the right evaluation, it is difficult to know which innovations are worth

adopting. The costs of implementing untested innovations, and ignoring lessons learned elsewhere,

are substantial (Lamont et al 2016). Nurse-led follow-up for cancer patients is a complex

intervention, with many interrelated components, as both the profession, and the process of

delivery, continue to evolve. Development and integration of nurse-led cancer follow-up in this

cancer unit was multi-faceted, therefore the evaluation incorporates findings from the three main

stakeholders, patients, CNSs, and consultants.

The findings demonstrate that fundamental steps in the successful development and integration

of nurse-led clinics are adequate planning, and methodical preparation. Staff professional

development, work-based learning, competencies, documentation, medical support, organisational

infrastructure, and patient risk stratification, are core elements that should be considered during

development, and could be used as a framework to guide this essential phase. Careful attention

must be paid to professional development to ensure that nurses are adequately equipped for the

extended role. Findings from this evaluation suggests there is a need for a period of learning and

adjustment before CNSs feel confident to lead follow-up services.

Farrell (2016) divides the drivers for initiating nurse-led cancer follow-up clinics into two main

categories, to meet patients’ needs, and to promote efficiency in service delivery. The TCFU in NI

[Northern Ireland Cancer Network, 2010] has this dual focus, recognising that people with cancer

were not having their needs addressed within traditional, medical-led follow-up services, and the

increased pressures on clinical services. Irrespective of the drivers for change, it is important that the

following survivorship components are an integral part of nurse-led cancer follow-up care, to ensure

patients’ needs are central, and that standards of care are based on their needs:

Provision of adequate education, and sign-posting information, to enable patients to take

responsibility for their care.

Sufficient time and encouragement/prompts, such as HNA, to enable patients to raise questions

and concerns.

Health promotion.

Emotional support.

Contact details of a person patients can contact when needed.

The model of care delivered and evaluated here was nurse-led, rather than ‘nurse-alone’, care,

which is an important distinction. For CNSs to function in a nurse-led role requires the support of the

multi-professional team, with the medical consultant as a pivotal team member. In this project, close

collaboration between the CNSs and medical consultants was embedded in the planning and

initiating phase, and included an agreed risk stratification approach for each tumour site team,

completion of clinical competency framework between CNSs and tumour-specific consultants, and

mentoring/shadowing.

One of the concerns about the evolution of nurse-led follow up is the effect on CNSs’ existing

roles, and the risk of diluting the therapeutic effect of nursing through greater emphasis on the

technical aspects of clinical care (Richardson et al 2002). To effectively undertake this extended role,

CNSs must be able to combine technical aspects of clinical care, with compassionate person-centred

care. Although some of the CNSs in this service evaluation acknowledged the need to reconfigure

their job plans, resulting in less direct contact with inpatients, at the same time they reported how

this extended role increased their job satisfaction, and enhanced their professional role as nurses.

The CNSs recognised the importance of enhancing and widening the breadth of service delivery at

the nurse-led follow-up visits, compared to the traditional medical follow-up care, and focusing on

patient education, empowerment, and health promotion. Nurses have an important role to play in

follow-up care, are well placed to undertake this, and can deliver survivorship care effectively (NCSI

2013), and nurse-led clinics offer them the opportunity to do this.

Patients and medical consultants agreed that nurse-led follow-up provides an opportunity for

clinical assessment of response to treatment, and psychological support, patient empowerment and

education. The British Medical Association (2015) highlighted the considerable benefits of working in

partnership with patients to empower them to take more control over their health, and to make

informed decisions about what services to access when in need of care, therefore supporting them

to become effective collaborators in their health care. Empowerment is an important consideration

for future post-treatment management of patients with cancer, because of the increasing number of

survivors, with wide ranging physical and psychological challenges.

The medical consultants in this evaluation were keenly aware of the shortcomings of medical-led

follow-up, including hurried clinics and lack of continuity, which translates into consultations that are

less conducive to patients expressing their concerns or asking questions. Despite this, the literature

suggests that, in the UK, Australia, and the US, most oncologists prefer oncologist-based models of

follow-up care, instead of delegating, or sharing this responsibility with primary care or CNSs

(Jeffords et al 2013). However, CNSs and nurse practitioners consistently express enthusiasm for

involvement in survivorship care, in a supportive environment, and welcome the opportunity

develop nurse-led follow-up clinics (Wells et al 2015). Given the apparent opposing views within

the literature, it is important to focus on key enablers for successful implementation of nurse-led

clinics, such as structured pathways, a skilled and experienced workforce, identifying champions

for change, and CNSs who can demonstrate leadership, passion, and commitment to service

redesign.

Nurse-led cancer follow-up is a complex intervention, and it is challenging to extract precisely

what components add to its effectiveness. However, this evaluation highlights some important

aspects that are valued by patients, and explain why they considered their experience of nurse-led

cancer follow-up clinics positively, for example continuity of care, complemented by the

development of rapport, and establishment of a trusting relationship with the nurses. Additional

aspects highlighted by patients were evidence of expert knowledge, and relevant information

provision by the CNSs. Importantly, all patient participants wanted to continue with nurse-led

follow-up. It is clear that giving patients sufficient time to explore and discuss their concerns, in

addition to the therapeutic value of continuity and good communication, are pivotal to delivery of

effective nurse-led clinics (Faithful and Hunt 2005).

Limitations The findings of this service evaluation should be interpreted with caution, as they reflect a small-

scale project in one cancer unit. The patient data were collected using a self-designed, non-validated

survey, which has inherent pitfalls, including positive bias, and patient satisfaction is not always

linked to quality improvement. Critics could argue that improved satisfaction with nurse-led clinics is

attributable to reduction in waiting times, or longer consultation times, rather than to the care

provided.

The non-response rate was 46% for the patient survey, and 41% for the consultant survey, which

is relatively high, and no information on non-respondents was collected. It could be argued that non-

respondents hold less favourable views on nurse-led cancer follow-up clinics, adding positive bias to

the findings. Further, the authors did not undertake an economic comparison between nurse-led

and medical-led follow-up, therefore cost-effectiveness was not evaluated.

ConclusionTraditional models of cancer follow-up care often do not address patients’ survivorship needs, and

recent cancer policies recommend reviewing current service provision, and considering innovative

ways of addressing the needs of the increasing numbers of cancer survivors, within a survivorship

framework. The findings of this service evaluation suggest that nurses can develop and integrate

patient-focused, nurse-led cancer follow-up services effectively, and are well placed to provide

comprehensive survivorship care. The project has allowed CNSs to demonstrate their value to the

organisation, through leading, developing, and delivering care endorsed by patients and medical

colleagues. However, there is a need for further research, as there is uncertainty about cost-

effectiveness of nurse-led clinics, and precisely which components enhance wellbeing, and promote

quality of life.

Implications for practice Comprehensive planning and preparation is necessary to enable CNSs to develop the skills and

competencies required to deliver safe and effective nurse-led cancer follow-up clinics.

Patients appear satisfied with this nurse-led follow-up service, particularly the continuity,

empowerment, and delivery of holistic care.

Nurse-led cancer follow-up can address unmet needs, and survivorship issues.

Nurse-led follow-up appears feasible, but further research should incorporate evaluation of

patient outcomes and wellbeing, and cost-effectiveness.

British Medical Association (2015) Quality First: Managing Workload to Deliver Safe Patient Care.

file:///C:/Users/User/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/

TempState/Downloads/Workload-Management-Document-130516.pdf (Last accessed: 15 November

2017.)

Caird J, Rees R, Kavanagh J et al (2010) The Socioeconomic Value of Nursing and Midwifery: A

Rapid Systematic Review of Reviews. EPPI Centre, Social Science Research Unit, Institute of

Education, University of London.

Davies N, Batehup L (2011) Towards a personalized approach to aftercare: a review of follow-up in

the UK. Journal of Cancer Survivorship. 5, 2, 142-151

Farrell C (2015) Advanced Nursing Practice and Nurse-Led Clinics in Oncology. Routledge, Oxon.

Faithfull S, Hunt G (2005) Exploring nursing values in the development of a nurse-led service.

Nursing Ethics. 12, 5, 440-452.

Jefford M, Rowland J, Grunfeld E et al (2013) Implementing improved post-treatment care for

cancer survivors in England, with reflections from Australia, Canada and the USA. British Journal of

Cancer. 108, 1, 14 -20.

Kent E, Arora N, Rowland J et al (2012) Health information needs and health-related quality of life

in a diverse population of long-term cancer survivors. Patient Education and Counselling. 89, 2, 345-

352.

Khan N, Mant D, Carpenter L et al (2011) Long-term health outcomes in a British cohort of breast,

colorectal and prostate cancer survivors: a database study. British Journal of Cancer. 105, 1, 29-37.

Lamont N, de Pury J, Fulop N et al (2016) New approaches to evaluating complex health and care

systems. British Medical Journal. 352.

Maddams J, Utley M, Møller H (2012) Projections of cancer prevalence in the United Kingdom,

2010-2040. British Journal of Cancer. 107, 7, 1195-1202.

National Cancer Survivorship Initiative (2013) Living With and Beyond Cancer: Taking Action to

Improve Outcome www.gov.uk/government/uploads/system/uploads/attachment_data/file/

181054/9333-TSO-2900664-NCSI_Report_FINAL.pdf (Last accessed: 30 June 2017.)

Richardson A, Halliday D, Wilson-Barnett J (2002) Evaluating the Impact of Introducing Lung and

Colorectal Nurse Specialists into the South East London Cancer Network. King’s College University,

London.

Wells M, Semple C, Lane C (2015) A national survey of healthcare professionals’ views on models

of follow-up, holistic needs assessment and survivorship care for patients with head and neck

cancer. European Journal of Cancer Care. 24, 6, 873-883.