STRATIFIED FOLLOW UP: SUPPORTING PATIENTS TO SELF-MANAGE

Art & science The survivorship acute synthesis care of art and science is lived by the nurse in the nursing act JOSEPHINE G PATERSON STRATIFIED FOLLOW UP: SUPPORTING PATIENTS TO SELF-MANAGE Claire Taylor outlines a personalised approach to after-care following cancer treatment to help people live well with and beyond the disease Abstract Changing the way people are supported after cancer treatment is a national priority to ensure they are helped to live well with and beyond the disease. At present, follow-up care is medically led, does not meet all people s needs and has insufficient capacity to cope with increasing numbers of survivors. Implementing stratified follow up can improve after-care as it offers a personalised approach, promotes supported self-management and allocates more resources to those in greatest need. This article proposes that, before implementation of stratified follow up, time is taken to embed the recovery package in mainstream after-care, thereby offering greater opportunities for support after cancer treatment. Practical considerations are discussed, informed by experience of running a pilot pathway for colorectal cancer survivors. To achieve this service redesign, a cultural shift is required by managers and commissioners to enable the necessary resource allocation. Keywords After-care, follow up, recovery package, supported self-management, survivorship Correspondence clairetaylor8@nhs.net Claire Taylor is Macmillan nurse consultant in colorectal cancer, St Mark s Hospital, Harrow, Middlesex Date of submission May 19 2015 Date of acceptance June 11 2015 Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software GIVEN THE growing number of people living with cancer, the focus must continue to be on how to develop services that will help them live well after completion of treatment (Maher and McConnell 2011). One of the main shifts advocated by the National Cancer Survivorship Initiative (NCSI) (Department of Health (DH) et al 2013) was a change in service provision from follow up to after-care, based on an ethos of supported self-management to enable people to have greater responsibility for their care. After-care, incorporating an early and late monitoring phase, forms the largest part of the cancer pathway for most people. It is important that during this time, whether it spans months or years, the support provided meets the specific challenges they face when living with and beyond the disease (Richards et al 2011). Rather than assuming that one model of after-care fits all, new pathways are proposed that tailor support according to individual needs while also continuing to monitor and address longer-term health and social care requirements. The priorities for after-care are becoming clearer as evidence emerges about the range and extent of cancer survivors needs (Armes et al 2009, Khan et al 2011, Boyes et al 2012, Corner and Wagland 2012, DH 2012, Macmillan Cancer Support 2013a, 2013b). While many survivors will, with the right package of information and support, recover well in time (Zucca et al 2012), a minority are at risk of adverse physical, psychological and social effects (Short et al 2005, Deimling et al 2006, Foster et al 2009) that may emerge either soon after diagnosis or in the ensuing years after treatment (Weaver et al 2014). Therefore, those with the greatest and most complex needs must receive the most professional support (Macmillan Cancer Support 2014a). A balance also has to be found between adequately addressing people s acute needs while monitoring and responding effectively to any concerns that arise over time as a result of being diagnosed and treated for cancer. Stratified follow up In this context the term stratified means arranging patients into well-defined groups for their follow-up care based on the level of professional intervention required. It differs from a traditional approach where one model fits all to a more personalised arrangement 14 July 2015 Volume 14 Number 6 CANCER NURSING PRACTICE

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Art & science acute survivorship care Figure 1 of after-care where resources are allocated according to need. This is achieved by determining which care pathway is most suited to an individual based on assessment of a number of different features including their disease, the treatment they have had to date and their ability to self-manage. Professional support is provided until all relevant concerns and treatment consequences are addressed and the individual feels able to self-care (DH et al 2013). Initially three levels of stratified care were proposed for all patients treated with curative intent, as shown in Figure 1: supported self-care, shared care and complex case management. More recently, and following the Ipsos MORI (2012) evaluation of after-care services delivered in the first eight test communities (pilot sites) across the UK, two pathways are now suggested: Supported self-management. Professional-led follow up. Professional-led follow up may be required by a smaller percentage of patients those who need the most intervention because they have more complex needs and/or have a risk of disease recurrence that requires scheduled interventions typically provided in secondary care. Review may be face-to-face but might also include telephone consultation, reflecting many providers existing follow-up arrangements. Supported self-management is more divergent from the traditional model and warrants further explanation. Stratification process showing levels of professional care required on the left-hand side of triangle Professional care (National Cancer Survivorship Initiative 2013) Self-care with support and open access Needs stratification Shared care Complex case management through MDT Intervention Supported self-management Survivorship care is underpinned by an ethos of supported self-management (DH et al 2013). This approach has become an important component of chronic illness care and is promoted as a way to enhance quality of life for people with long-term conditions (NHS England 2015). Supported self-management changes the focus of professional care from managing disease to helping people stay as healthy as possible. It involves shared agenda setting, collaborative goal setting and information giving as part of any intervention (Health Foundation 2013). Roles are redefined and support given in ways that enable people to manage their own health, or co-create health. By minimising any dependence patients have on their treatment team and reliance on routine appointments to give them the all clear, it is hoped they will be more responsive to health education and take greater responsibility for monitoring and managing their condition. Before people can take over their after-care they need sufficient time to recover from diagnosis and treatment. Enhanced professional intervention is advocated during this early part of the after-care pathway termed the early monitoring phase to promote the recovery process (Davies and Batehup 2010). A series of interventions termed the recovery package (NCSI 2014) has been created to aid this intervention and improve outcomes. The recovery package Early on in the pathway the recovery package offers pre-emptive support and tailored information to allow a smoother and hopefully swifter process of adaptation. It includes holistic needs assessment and care planning, a treatment summary, a cancer care review, and a health and wellbeing event, all of which try to address needs arising in the first few months after treatment (Figure 2). During the early monitoring phase, individuals often experience a period of transition as they recuperate from their treatment, which may initially leave them exhausted and with acute symptoms (Hewitt and Ganz 2006). Recovery includes rebuilding confidence (Foster and Fenlon 2011), rediscovering self (Block 2008) and restoring a sense of control over the body (Taylor et al 2010). Individuals need to be given space but also support to make sense of what has happened and work out how to live their daily life, with and beyond cancer. Such issues will hopefully be identified during assessment, addressed through care planning and may in part be resolved through attendance at health and wellbeing and other planned survivorship events. When these interventions are delivered together they have the potential to assist individuals 16 July 2015 Volume 14 Number 6 CANCER NURSING PRACTICE

in moving forward by supporting their rehabilitation and enabling them to return to as near normal routines as possible ( Hughes et al 2014 ). The recovery package has been developed not just to promote recovery but also to sustain it, and should be offered as an integral component of after-care whichever stratified pathway is offered (Macmillan Cancer Support 2014b ). Figure 2 The recovery package Sustaining recovery While many of the interventions in the recovery package are designed for delivery in the first year after treatment, individuals still require access to support and patient-focused services after this time, particularly if they no longer receive a regular review (DH et al 2013). Continuous availability of education and encouragement to help sustain people in self-managing their after-care can improve their experience of recovery, and has also been shown to reduce use of health services (Coulter and Ellins 2006 ). This support may include opportunities to participate in physical activity, and diet and weight management, as well as guidance on when and how to seek further help should concerns arise. Stratified pathway management includes being alert to an individual s risk of developing consequences of cancer, and its treatment, as well as providing a robust monitoring system. Monitoring should be shared between a provider and an individual on the pathway, who both need to be aware of the consequences associated with that cancer and its treatment. This extends to being familiar with signs, symptoms and risk of disease recurrence, as should be indicated in the individual s treatment summary (Macmillan Cancer Support 2013b ). Learning from a pilot of one supported self-management pathway A stratified pathway was piloted at the London North West Healthcare NHS Trust as part of the second phase of test communities led by NHS Improvement. Twenty five patients with colorectal cancer treated with curative intent and who met the inclusion criteria for supported self-management entered the pilot. Patients were offered the option to join the pilot after their post-surgical multidisciplinary team meeting review. Those who were willing attended one consultant appointment and then four weeks later participated in a nurse-led, supported self-management consultation (Box 1 ). Much of this 45-minute appointment was spent developing a care plan informed by the concerns identified from the holistic needs assessment. Actions were agreed and goals set that were then reviewed in subsequent telephone consultations. Copyright Macmillan Cancer Support (2013c) Permission granted for use as seen, this notice must remain intact in all cases. All rights reserved. Box 1 Content of supported self-management consultation 1. Assess patient s understanding of treatment received 2. Check understanding of histology and discuss what it means in terms of risk of recurrence 3. Conduct assessment of information need as part of broader assessment of care needs and concerns 4. Discuss expected recovery in the short, medium and longer term 5. Discuss surveillance schedule, with rationale and what to expect over five years 6. Advise on any consequences of cancer and its treatment 7. Discuss alert systems and how to re-enter services 8. Discuss the value of a healthy lifestyle and benefits of exercising, eating healthily, not smoking and moderating alcohol intake 9. Offer the range of available written resources including: Living Well/Life after Cancer Eating Well Moving More Looking After Self, After Cancer/Ten Top Tips Managing Your Follow up/supported Self-Management 10. Give dates of next health and wellbeing event and other survivorship initiatives 11. Discuss services and resources that will remain available including benefits advice, psychological support and social services 12. Ensure written information given about local and national support groups 13. Explain entitlement to cancer care review 14. Ensure patient has a contact information card and knows who to call for further advice CANCER NURSING PRACTICE July 2015 Volume 14 Number 6 17

Art & science acute survivorship care Box 2 Figure 3 Overview of stratified pathway Professional-led follow up Surveillance and monitoring (Adapted from Samarasinghe and Wiles 2012) Participants were also invited to attend a health and wellbeing event and other survivorship initiatives running locally within the next six months. When all needs stated on the care plan had been met and no new concerns had been identified, individuals moved to remote monitoring and no further consultations were booked. By this stage, all patients were familiar with the surveillance they had planned over the next five years and had received supporting written information. They were given easy access to the clinical nurse specialist (CNS) as their key worker through a dedicated email and telephone helpline, and were assured they would be seen promptly by the surgical team if necessary. Surveillance was monitored remotely using an electronic recording system; this had been developed in-house to provide a reliable search and retrieval system for all biochemistry and radiology results requested. The software also helped the CNS in charge of monitoring to formulate personalised letters from a range of standard templates to report results to the Patient feedback on supported self-management It s good to know someone cares about how I was getting on and that advice and help is only a phone call away I feel much more relaxed, knowing someone is caring for me and that I am not alone I found this support extremely helpful and it got me through my recovery Received helpful advice, which I acted upon I preferred being in the comfort of my home to discuss issues by phone Start point End of treatment Stratify Recovery package Open access to key worker, for example, clinical nurse specialist, by email/phone End point Discharge at five years Supported self-management Surveillance and monitoring patient and GP. A weekly virtual monitoring clinic was created, which meant the CNS had protected time to check and request patients surveillance. The pilot was evaluated after 25 patients had been recruited. A questionnaire was developed and posted to the first 20 people who had been on the pathway for at least six months to ascertain their satisfaction with the service. High levels of satisfaction were recorded and all patients indicated they were happy to remain on the pathway. Patients said they liked the convenience of the phone consultations and appreciated having good access to the CNS and the knowledge that they were not on their own (Box 2 ). Three patients cited developing new knowledge as one of the benefits of the pathway, not only about the rationale for surveillance but also their own health; one had started their own test results folder. Four patients made notable lifestyle behaviour changes: three undertook more regular exercise and one took up meditation. It appears that this consultation offers a teachable moment in the cancer pathway when survivors can be challenged and may be more willing to accept ideas about positive, healthy behavioural changes ( Demark-Wahnefried et al 2005, Sterba et al 2014 ). An overview of the stratified pathway is shown in Figure 3. Implications for practice Strong clinical leadership, confirmed management support and the right infrastructure must be in place before introducing stratified pathways, which will ensure the following can be offered to patients: An embedded recovery package. A robust and responsive IT monitoring system. Open access to the specialist service. Recovery package interventions holistic needs assessment, treatment summary and a health and wellbeing event need to be embedded in clinical practice before introducing stratified pathways, particularly when moving patients to supported self-management. This includes the development of the treatment summary, generated by the responsible clinician at the end of treatment, to provide important information on a particular patient s treatment and any toxicities experienced, possible consequences of treatment, signs and symptoms of a recurrence, and any actions for the GP. The content highlights to the GP issues to discuss in the cancer care review. Although this review is completed in primary care, it is integral to the recovery package and patients should be encouraged to ask their GP for one. Consideration should be given to how best to deliver on all aspects of the recovery package to improve patient information and support as well as co-ordination of care between sectors. 18 July 2015 Volume 14 Number 6 CANCER NURSING PRACTICE

It is helpful to start small and enter a sample of patients on the pathway to test its feasibility and reliability. In this way the full resource requirement can be more carefully calculated. Planning should also include identification of who else could offer support through liaison with local agencies and charities. Aspects often overlooked when planning this service redesign include additional administrative support needed to: send out patient letters; organise consultations; and plan attendance at health and wellbeing events. It is likely that a business case will be needed unless existing resources can be redirected. Recovery package interventions are labour-intensive and this needs to be factored into nursing and allied health professions job plans. The delivery of the interventions should be regarded as chargeable activity in each patient s pathway and each requires a tariff. They are not add-ons or extras but integral to the whole approach and must be seen as non-negotiable when approving after-care arrangements with commissioners. The ostensible cost-savings from reduction in face-to-face outpatient appointments may become a powerful driver in the implementation of stratified follow up, but quality patient-centred indicators such as perceived recovery, symptom scores and/or quality of life measures also need to be incorporated into the service redesign. Conclusion The main aim of stratified follow up is to provide better post-treatment support to the growing number of cancer survivors. There is a greater emphasis on self-management, addressing holistic needs and encouraging positive lifestyle changes to improve the overall quality of a patient s after-care. The recovery package interventions should be integral to care offered in any stratified pathway. While some patients will not be suited to self-management support, all can benefit from the other elements of this approach. Stratified pathways require different professional roles and allocation of new resources. The time required to co-ordinate the interventions, organise consultations and monitor patients surveillance should not be underestimated and must be planned for. Evidence suggests that provided patients are well prepared, informed and have good support systems, satisfaction with this type of follow up is high. Author guidelines journals.rcni.com/r/ cnp-author-guidelines Online archive For related information, visit our online archive and search using the keywords Conflict of interest None declared References Armes J, Crowe M, Colbourne L (2009) Patients supportive care needs beyond the end of cancer treatment: a prospective, longitudinal survey. Journal of Clinical Oncology. 27, 36, 6172-6179. Block P (2008) The Perception of Cancer Among Recently Diagnosed Patients. tinyurl.com/ pccyb8p Boyes A, Girgis A, D Este C et al (2012) Prevalence and correlates of cancer survivors supportive care needs 6 months after diagnosis: a population-based cross-sectional study. BMC Cancer. 12, 150. Corner J, Wagland R (2012) National Cancer Survivorship Initiative: Text Analysis of Patients Free Text Comments: Final Report. University of Southampton, Southampton. Coulter A, Ellins J (2006) Patient-Focused Interventions A Review of the Evidence. tinyurl. com/p7pelhh Davies N, Batehup L (2010) Self-Management Support for Cancer Survivors: Guidance for Developing Interventions. An Update of the Evidence. tinyurl.com/q3643f5 (Last accessed: June 16 2015.) Deimling G, Bowman K, Sterns S et al (2006) Cancer-related health worries and psychological distress among older adult, long-term cancer survivors. Psycho-oncology. 15, 4, 306-320. Demark-Wahnefried W, Aziz N, Rowland J et al (2005) Riding the crest of the teachable moment: promoting long-term health after the diagnosis of cancer. Journal of Clinical Oncology. 23, 24, 5814-5830. Department of Health (2012) Quality of Life of Cancer Survivors in England. Report on a Pilot Survey Using Patient Reported Outcome Measures. tinyurl.com/nad3wa3 (Last accessed: June 16 2015.) Department of Health, Macmillan Cancer Support and NHS Improvement (2013) Living With and Beyond Cancer: Taking Action to Improve Outcomes (An Update to the 2010 The National Cancer Survivorship Initiative Vision). tinyurl.com/q54hwpv (Last accessed: June 16 2015.) Foster C, Fenlon D (2011) Recovery and selfmanagement support following primary cancer treatment. British Journal of Cancer. 105. Suppl. 1, S21-S28. Foster C, Wright D, Hill H et al (2009) Psychosocial implications of living 5 years or more following a cancer diagnosis: a systematic review of the research evidence. European Journal of Cancer Care. 18, 3, 223-247. Health Foundation (2013) Sustaining and Spreading Self-Management Support. tinyurl. com/om9mlk8 Hewitt M, Ganz P (Eds) (2006) From Cancer Patient to Cancer Survivor Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium. National Academies Press, Washington DC. Hughes C, Henry R, Richards S et al (2014) Supporting delivery of the recovery package for people living with and beyond cancer. Cancer Nursing Practice. 13, 10, 30-35. Ipsos MORI (2012) Evaluation of Adult Cancer Aftercare Services. Qualitative Analysis of Care Coordination Services. tinyurl.com/oofu4sy Khan N, Evans J, Rose P (2011) A qualitative study of unmet needs and interactions with primary care among cancer survivors. British Journal of Cancer. 105. Suppl. 1, S46-S51. Macmillan Cancer Support (2013a) Throwing Light on the Consequences of Cancer and its Treatment. tinyurl.com/nm49v36 Macmillan Cancer Support (2013b) Cured - But at What Cost? Long-Term Consequences of Cancer and its Treatment. tinyurl.com/kf3ubjk Macmillan Cancer Support (2013c) The Recovery Package. tinyurl.com/njshzg5 Macmillan Cancer Support (2014a) Cancer s Unequal Burden. The Reality Behind Improving Cancer Survival Rates. tinyurl.com/nzxkbd9 Macmillan Cancer Support (2014b) Routes from Diagnosis. The Most Detailed Map of Cancer Survivorship Yet. tinyurl.com/nwr49eh (Last accessed: June 16 2015.) Maher J, McConnell H (2011) New pathways of care for cancer survivors: adding the numbers. British Journal of Cancer. 105, Suppl 1, S5-S10. National Cancer Survivorship Initiative (2013) Stratification Process. tinyurl.com/o5oac4f (Last accessed: June 16 2015.) National Cancer Survivorship Initiative (2014) The Recovery Package. tinyurl.com/o33vgym NHS England (2015) Helping Patients Take Charge of Their Care. tinyurl.com/q7vwajy Richards M, Corner J, Maher J (2011) The National Cancer Survivorship Initiative: new and emerging evidence on the ongoing needs of cancer survivors. British Journal of Cancer. 105. Suppl. 1, S1-S4. Samarasinghe BSW, Wiles L (2012) Meeting patient needs with a risk-stratified colorectal cancer follow-up. Gastrointestinal Nursing. 10, 3, 37-43. Short P, Vasey J, Tunceli K (2005) Employment pathways in a large cohort of adult cancer survivors. Cancer. 103, 6, 1292-1301. Sterba K, Zapka J, LaPelle N et al (2014) A formative study of colon cancer surveillance care: implications for survivor-centered interventions. Journal of Cancer Education. doi:10.1007/s13187-014-0756-1. Taylor C, Richardson A, Cowley S (2010) Restoring embodied control following surgical treatment for colorectal cancer: a longitudinal qualitative study. International Journal of Nursing Studies. 47, 8, 946-956. Weaver K, Aziz N, Arora N et al (2014) Followup care experiences and perceived quality of care among long-term survivors of breast, prostate, colorectal, and gynecologic cancers. Journal of Oncology Practice. 10, 4, e231-e239. Zucca A, Boyes A, Linden W et al (2012) All s well that ends well? Quality of life and physical symptom clusters in longterm cancer survivors across cancer types. Journal of Pain and Symptom Management. 43, 4, 720-731. CANCER NURSING PRACTICE July 2015 Volume 14 Number 6 19