Global issues in cancer survivorship: a UK perspective on follow up care

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globe global issues hands with map concept_oncology news australiaBy Dr Deborah Fenlon, University of Southampton.

The number of people being diagnosed with, successfully treated for, and surviving cancer world-wide is rapidly rising, and so the numbers of cancer survivors in the population is also increasing. For example, the number of cancer survivors in the UK doubled from the 1990s to the current day and is predicted to nearly double again by 2030 (Maddams et al 2012).

However, this is not without cost and many people surviving cancer are left with ongoing problems as a consequence of their diagnosis and treatment, which may have a considerable impact on their lives. For example, people who have had cancer are twice as likely as aged matched controls to report poor or average health, twice as likely to agree strongly that their health has prevented them working in their preferred occupation and more than twice as likely to have visited their GP or other health care professional over ten times in the last year (Elliott et al 2011).

Continuing to provide follow up care for cancer survivors in the traditional way in secondary care settings is now becoming unsustainable. Moreover, it has also been found to be inadequate to meet people’s needs and ineffective at detecting recurrence or reducing mortality (Cuniffe et al 2010).

“The way in which care is provided for this ever increasing population needs to change.”

At this transition phase from active treatment to follow up cancer survivors are particularly vulnerable. Their self-confidence has been knocked and they need to be supported to regain self confidence in their own ability to manage the problems they face after cancer (Foster & Fenlon, 2011). There is evidence from long term conditions that people who are supported to manage their own health and health related problems can have improved symptom management, better quality of life and an increased sense of personal empowerment.

workshop blackboard_oncology news australiaSelf-management of this kind has also been shown to improve patient outcomes in people who have had cancer. However, self-management is only effective where it is supported by appropriate health professional support. This can come in a variety of techniques and tools, such as information, e-health technology, workshops and programmes of recovery, but is only truly enabled when there is a change in the relationship between caregivers and patients into one of a collaborative partnership (Bodenheimer, 2005?8). Natalie Grazin from the Health Foundation has described this as:

A whole-system approach. It involves far more than providing a one-off expert patient course, although these can be useful. Clinical services, systems, processes and environments must all convey to patients the message: ‘You have a part to play. We are partners. We respect your role and will support you to be part of the team.”  (Grazin 2007)

There has been an awareness for some time now of the needs of cancer survivors and health professionals worldwide have been looking to find ways to address these needs.

strategy team team players chess board_oncology news australiaIn 2005, the American Cancer Society published a report on survivorship identifying strategic objectives of raising awareness of survivorship, developing survivorship care plans, assessment tools and quality of life measures to identify need and to work on coordinated care systems between hospital and community health services (ACS 2005).

In the UK, the cancer charity Macmillan Cancer Support has been at the forefront of developing the strategy and tools to support cancer survivors. Macmillan has developed a Recovery Package for people at the end of treatment with three core principles: assessment and care planning, treatment summary and cancer care review, and the provision of education and support through health and wellbeing events. These are supported by tools such as the ‘Ten Top Tips: what to expect after cancer treatment ends’ (Macmillan Cancer Support 2014) and ‘After Cancer Treatment: a guide for professionals’ (Macmillan Cancer Support 2014).

It is recognised that, while the majority of people will be relatively well after cancer and well able to manage their own care without ongoing follow up support from specialist oncology services, some people’s recovery will be more complex or protracted, so that care pathways should be stratified according to need and ability to self-manage.

woman sitting reading_oncology news australia_crpdThe latest strategy for cancer in the National Health Service in England identifies six key areas for improvement in cancer care (DoH 2016). A priority has been given to individual patient experience, putting this on an equal footing with other clinical outcomes. The fourth key objective is ‘Living with and beyond cancer’ where the strategy states: We will support people affected by cancer to live healthy and happy lives.’ (DoH 2016). Key areas of work within this strategy include: the development of a new patient reported outcome measure to collecting data on long term QOL; driving the spread of risk-stratified follow up pathways; developing guidance for the prevention and management of long term consequences of cancer; focussing on supported self management and ensuring good assessment as people transition from one part of care to another.

Around the UK there are many initiatives to change the way that follow up care is provided to people after cancer. A major concern should be to ensure that robust evidence is collected to inform the development of these services in an effective manner. To date evidence is often provided by service evaluations, many of poor quality or reported within the context of a pre-conceived agenda. The proliferation of evaluations reporting that those patients who attend new services are satisfied with their delivery does little to ensure equity of service or to know that need is being met. There is a need for the generation of quality evidence to ensure that service changes are not driven purely by the need to save money.

team group paper man conceptIn University Hospitals Southampton NHS Trust major pathway redesign has been undertaken from outpatient follow-up care to self-managed care in a number of tumour pathways, with a rigorous study design to assess the effectiveness for the new services. As randomisation is not possible, data was collected prior to service change and then following service change at baseline and three further times over the course of a year, comparing people who entered the new service (PTFU) with those that stayed in traditional follow up (OPFU). Data has been collected on people with testicular, prostate, colorectal and breast cancer (Batehup et al 2016, Cooke et al 2016, Richardson et al 2016, Batehup et al personal communication). Measures used were: FACTG (B), a modified version of Cancer Survivors Unmet Needs Survey (CASUN), EQ5D, GP Physical Activity Questionnaire (GPPAQ), Patient Activation Measure (PAM) to measure knowledge and confidence to self-manage, and a study developed tool for experience of care.

Once pathway redesign had occurred patients were assessed for their suitability for remote monitoring and follow up. People with breast cancer who were suitable for self-managed follow-up, were advised as they reached the end of treatment that their next outpatient visit would be their last. At the last appointment the oncologist discussed signs and symptoms of recurrence and lifestyle measures. A detailed treatment summary and surveillance plan were given to both the patient and their family doctor.

health concept - cloud of related words and topicsEach woman was seen by a support worker who gave information about sources of support and arranged their routine surveillance (such as a yearly mammogram). All women were offered access to a course supplied by the UK charity Breast Cancer Care. This course, called Moving Forward, ran over four weeks on one morning per week, covering information sessions on items such as diet, exercise, lymphoedema and managing menopausal symptoms. All women were reminded of the way to access their breast care nurse and given the BCN telephone number with advice to ring if they had any concerns. If necessary they would have rapid access back to the oncology clinic. The results of this change are currently being analysed and will include people’s ability and confidence to self-manage.

People with testicular cancer were only put onto the PTFU pathway if they attended a workshop run by the Clinical Nurse Specialist. Results from this showed that men with testicular cancer in PTFU had equivalent health, QoL and supportive care needs when compared to those who were being cared for prior to the change in follow up care, but that prior to the change the men had higher GP use (p<0.05) ) (Batehup et al 2014). Comparing those in PTFU with those in OPFU, the PTFU group were more physically active (p<0.001) and had better self care scores (p<0.001). Furthermore, those in PTFU had higher unmet needs (p<0.05) AND higher met needs (p<0.05) (Batehup et al 2014). The service change provided to people with colorectal cancer also included a workshop run by the specialist nurses and ongoing support provided by the specialist nursing team. Data yet to be published from this pathway redesign will also include reassurance, acceptability and confidence to self-manage.

men senior group_oncology news australiaA further contrast was provided with the change to prostate cancer follow up. This change to pathway is currently taking place  in four NHS trusts in the UK as part of the True NTH global programme (Richardson et al 2016). The requirements are slightly different due to the increased need for ongoing monitoring with prostate specific antigen (PSA) tests. A dedicated internet system was developed (MyMedicalRecord), which allowed immediate access to PSA results by both the patient and health professional. The Clinical Nurse Specialist ran a compulsory 3.5 hour workshop for all men entered onto the pathway, which introduces the principles of supported self-management.. The CNS carried out virtual PSA surveillance clinics, and reviewed holistic needs assessments that the men completed electronically. Analysis has not yet taken place for this system redesign, although qualitative evaluation has occurred. One patient said:

 “I hate this issue of being in the dark all the time, as I said, we live from result to result, and that period in between, we are left in the dark. I’m not any longer, I’m there, I’m with them, I’m up there with them. Any query, any issue, it’s like going to the board meeting isn’t it where decisions are being made and I can be part of those decisions being made. I really feel I am now part of the team, if you like, and not waiting for the answers, I’m up there with them now, and that’s what team work is all about, isn’t it?”  (Cooke et al 2016)

Lessons learned

Collection of data from people attending different clinics within one hospital will allow comparison of key differences in the system redesign. It will be possible to compare traditional follow up care with remote surveillance and supported self-management. Data will show whether these systems are equivalent in cost, use of primary and secondary care resources, acceptability of the service and reassurance provided, as well as people’s ability and confidence to self-manage their own follow up.

group of people hands together team concept_oncology news australiaThe quote from the man with prostate cancer suggests that this level of system redesign had achieved the change to supported self-management proposed by Grazin (2007) and Bodenheimer (2005/8) into a collaborative relationship between patient and health care provider.

While none of these data are randomized and any differences could be due to bias, there are a few key differences which may also contribute to different outcomes between the redesigned PTFU systems. The workshops were mandatory for all pathways other than for breast cancer. A comprehensive programme was in place for people with breast cancer, but this was not compulsory and it will interesting to note what proportion attend this programme.

The mandatory workshops provided in testicular, colorectal and prostate cancer were run by clinical nurse specialists, thus re-establishing the relationship between people with cancer and the nurses designated as their first point of call. All women with breast cancer had met their breast care clinical nurse specialist and been supported through diagnosis, but they may not have re-established this relationship at the point of transferring to follow up care. People undergoing frequent monitoring and ongoing surveillance, such as the men with prostate cancer, may have the opportunity to intensify this relationship and benefit from the frequency of contact. It is clear from the National Cancer Patient Experience survey in England that the support of a clinical nurse specialist (CNS) is the most important contributing factor to people’s positive experience of care.

The question implicit in system redesign is that if health services plan to increase individual patient responsibility at a time when people are vulnerable due to lost confidence, then are the processes being put in place sufficient to restore lost confidence to manage?  

The data that is coming out of this series of system redesigns will provide evidence as to whether self-management pathways can be effective for those with low-level need following cancer and what level of support for self-management needs to be integrated into systems and pathways of care. The data from the prostate cancer study suggests that the ongoing, remote relationship with clinical nurse specialists is important in maintaining trust and confidence, and that the use of treatment summaries, care plans and surveillance alone are not enough. System redesign must take into account how patients get the message that they are respected partners in care and how they will be supported.
[hr] About the Author

Deborah-FenlonDr Deborah Fenlon is an Associate Professor in the Faculty of Health of Sciences, University of Southampton, UK. With a background in nursing women with breast cancer, Deborah’s interest is in researching and promoting health and wellbeing in people who have had cancer. Deborah is a specialist adviser to EONS (European Oncology Nursing Society), to Breast Cancer Care, Breast Cancer Now and to Macmillan Cancer Support and a member of the National Cancer Research Institute Clinical Studies Group (NCRI CSG) for breast cancer. She also chairs the UK’s NCRI CSG breast cancer Symptom Working Party.

She recently addressed delegates as a key International Speaker at the COSA ANZBCTG ASM.


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