Winter 2016 edition of the EONS Magazine - catch up with the EONS-10 Congress

A transition model for teenagers and young adult survivors of cancer

Louise Soanes and Emma Potter evaluate a teenage & young adult long-term follow-up service for survivors of cancer in childhood.

Children who survive cancer live with significant consequences. In order to help them understand their needs and be proactive in their health management, a model of transition to adult services was negotiated based on principles that acknowledge the distinct requirements of young people.

Cancer in childhood is rare in the United Kingdom, with approximately 1,600 cases a year diagnosed in children aged 0-14.1 They form a unique group of cancers, and the common adult cancers rarely occur in this group. Due to their otherwise good health and supportive care, children can tolerate and are given high doses of therapy – leading to mean survival rates of more than 80% (<2%->90%).1 Evidence shows, however, that many survivors live with significant consequences (or “late effects”) of the cancer and/or its treatment, which can include endocrine insufficiency, as well as cognitive, cardiac and renal impairment.2,3

Dr Louise Soanes, TCT Nurse Consultant for Adolescents and Young Adults (now left the Trust), and Emma Potter, Clinical Nurse Specialist, Oak Center for Children and Young People

Dr Louise Soanes, TCT Nurse Consultant for Adolescents and Young Adults (now left the Trust), and Emma Potter, Clinical Nurse Specialist, Oak Center for Children and Young People. Photo credit: Royal Marsden Hospital

It was previously thought that these survivors required life-long medical follow up in long-term follow-up clinics (LTFU). Over recent years, however, this model has been reappraised in the UK. Guidance from the National Institute of Health and Clinical Excellence (NICE)4 now recommends a model of care with the following principles:

  • evidence-based risk stratified surveillance
  • clinical guidelines, personalised end-of-treatment summaries (EoTS) and care plans (CP)
  • allocated key workers
  • patient education
  • holistic needs assessment, and
  • transition to an age appropriate care providers or supported self-management (SSM).

Developing the model of care

The work described here took place in a cancer centre with a long-standing children and teenagers LTFU service. In 2013, with over 200 teenagers and young adults (TYA) held in a children’s service, and increasing numbers of survivors not-attending and lost to follow-up, it became apparent that our model of care required adjustment.

Louise Soanes presents findings to the EONS-10 Congress

Louise Soanes presents findings to the EONS-10 Congress

Funding was sought to establish two dedicated TYA and young adult (YA) LTFU clinics supported by a clinical nurse specialist, consultant endocrinologist, specialist paediatrician and an administrator. These clinics completed the model of care shown in Figure 1. The model is structured on evidence based clinical guidelines and risk stratified follow-up, facilitated by individualised end of treatment summary, patient education and care plan. The model facilitates transition as patients mature to take control of their health as they move into adulthood.

 

Survivorship pathway

Figure 1: The survivorship pathway

Service evaluation

A service evaluation of the TYA LTFU clinic was initiated, as this is the key driver of transition to adult care, be it transition to supported self-management or specialist LTFU medical care. Our sample was all patients (n=96) attending a TYA LTFU clinic over a nine-month period, and following governance approval. Data collection took place in summer 2016, and our aims and data collections methods are as follows:

  • Does the model of care meet users’ needs?: Retrospective postal survey (n=14).
  • Does the model reach relevant users?: Telephone interview with patients who did not attend appointments (n=23).
  • How far have the intended outcomes been achieved?: Audit of phone contact with CNS for LTFU (n=17). Thematic analysis of patient consultations (n=20).

Findings

Findings from the postal survey show most respondents remembered oral and written information on transition being given to them during preparation for the move to the TYA clinic. The key aims of the clinic were to empower TYA survivors to understand their past and present health needs, and to be proactive in their health management. This should be achieved through education based on their end-of-treatment summary, care plan and holistic needs assessment. All those who returned the survey felt that their health needs were discussed with them, they were listened to and that their questions were answered.

Emma Potter, Clinical Nurse Specialist, Oak Center for Children and Young People, with patient. Photo credit: Royal Marsden Hospital

Emma Potter, Clinical Nurse Specialist, Oak Center for Children and Young People, with patient. Photo credit: Royal Marsden Hospital

In order to evaluate how far the TYA clinic has been effective in empowering survivors to manage their health, we undertook a thematic analysis of the clinic consultations for 20 TYA survivors and the ad-hoc contacts with cancer nurse specialists for LTFU over the period of data collection. Four broad themes were identified.

  • Unhealed body

Many conversations and calls related to TYA actual healthcare issues such as liaison with other specialities – cardiac, endocrine, fertility services – as well as health worries: fear that the cancer would or had returned and concern that new symptoms with an unknown origin had appeared. This reflects the uniqueness of this group – though cured of a childhood illness, its impact on young people’s lives continued.

  • Moving on, getting stuck  

This theme describes the transition to supported self-management or adult long-term follow up. Most seemed to manage this well but, for some, there was a resistance to change and more information and encouragement were required to enable them to build/rebuild trust in the new hospital or community health services.

  • Growing up, fitting in

Discussions about changes in employment and education, learning to drive, social, sexual and family relationships, including discussions about accommodating consequences (cognitive difficulties, fatigue, anxiety) into everyday teenage/young adult life.

  • Health behaviours

Recognising teachable moments or points of interest to promote health and wellbeing and physical exercise, weight management, sleep, hygiene and smoking cessation. In the early stages of the clinic, these conversations were led by healthcare professionals but, over time, some TYA survivors took an increased interest in their own role and health.

Leaving TYA LTFU

The survey then examined the patient experience of transition to supported self-management in the community or to the YA LTFU clinic at the new provider. The medium score for feeling prepared for transition to supported self-management was 10 (8-10), with most expressing satisfaction with their experience. Those who moved to the YA LTFU felt slightly less well prepared and that the new team knew less about them. This less positive experience may be a reflection of greater complexity of the health needs within this group and the challenges they faced moving to a new and very different hospital environment.  (Fig.2.)

Graph of transition to a YA LTFU clinic

Figure 2. Transition to a YA LTFU clinic.

Who did we miss?

The last part of the evaluation aimed to find out why young adults did not attend the TYA LTFU clinic (Table 1). The reasons for not attending were diverse and reflected the emerging adult life of this group.

 

Age Median 21 years Range 17-25 years
Gender Female 12
  Male 11
Cancer diagnosis Solid tumours 5
  Brain/CNS tumours 1
  Leukaemia 10
  Lymphoma 6
Stratified level 1 1
  2a 7
  2b 6
  3 9
Reason given for non-attendance Forgot 10
Education/work 3
Mental health (anxiety, depression, phobia) 4
  In prison 2
  Refusal to attend 2
  Unknown 2
Outcome of CNS involvement Attended next outpatient appointment (OPA) 16
EoTS posted and transferred to supported self-management (SSM) 5
Lost to follow-up 2

Table 1. Why young adults did not attend TYA LTFU clinic.

 

Discussion

Although the response rate was low, the move into the TYA service seems accepted. The end-of-treatment summaries, care plans and holistic needs assessment appear to be embedded into the service and facilitated diverse and open discussions with the TYAs. The benefit of administrative and CNS support in enabling the follow up of frequent non-attendees is supported in the number who returned to follow up or had phone consultations with discharge to SSM. There was some evidence that further work was required to improve the transition experience for young people and their families transitioning to the YA service. As a result, the preparation for transition to adult services now starts earlier in the patient journey, often at, or soon after, entry to the LTFU service.