Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals

Background When cancer occurs in teenagers and young adults, the impact is far beyond the physical disease and treatment burden. The effect on psychological, social, educational and other normal development can be profound. In addition, outcomes including improvements in survival and participation in clinical trials are poorer than in younger children and older adults with similar cancers. These unique circumstances have driven the development of care models specifically for teenagers and young adults with cancer, often focused on a dedicated purpose-designed patient environments supported by a multidisciplinary team with expertise in the needs of teenagers and young adults. In England, this is commissioned by NHS England and delivered through 13 principal treatment centres. There is a lack of evaluation that identifies the key components of specialist care for teenagers and young adults, and any improvement in outcomes and costs associated with it. Objective To determine whether or not specialist services for teenagers and young adults with cancer add value. Design A series of multiple-methods studies centred on a prospective longitudinal cohort of teenagers and young adults who were newly diagnosed with cancer. Settings Multiple settings, including an international Delphi study of health-care professionals, qualitative observation in specialist services for teenagers and young adults, and NHS trusts. Participants A total of 158 international teenage and young adult experts, 42 health-care professionals from across England, 1143 teenagers and young adults, and 518 caregivers. Main outcome measures The main outcomes were specific to each project: key areas of competence for the Delphi survey; culture of teenagers and young adults care in the case study; and unmet needs from the caregiver survey. The primary outcome for the cohort participants was quality of life and the cost to the NHS and patients in the health economic evaluation. Data sources Multiple sources were used, including responses from health-care professionals through a Delphi survey and face-to-face interviews, interview data from teenagers and young adults, the BRIGHTLIGHT survey to collect patient-reported data, patient-completed cost records, hospital clinical records, routinely collected NHS data and responses from primary caregivers. Results Competencies associated with specialist care for teenagers and young adults were identified from a Delphi study. The key to developing a culture of teenage and young adult care was time and commitment. An exposure variable, the teenagers and young adults Cancer Specialism Scale, was derived, allowing categorisation of patients to three groups, which were defined by the time spent in a principal treatment centre: SOME (some care in a principal treatment centre for teenagers and young adults, and the rest of their care in either a children’s or an adult cancer unit), ALL (all care in a principal treatment centre for teenagers and young adults) or NONE (no care in a principal treatment centre for teenagers and young adults). The cohort study showed that the NONE group was associated with superior quality of life, survival and health status from 6 months to 3 years after diagnosis. The ALL group was associated with faster rates of quality-of-life improvement from 6 months to 3 years after diagnosis. The SOME group was associated with poorer quality of life and slower improvement in quality of life over time. Economic analysis revealed that NHS costs and travel costs were similar between the NONE and ALL groups. The ALL group had greater out-of-pocket expenses, and the SOME group was associated with greater NHS costs and greater expense for patients. However, if caregivers had access to a principal treatment centre for teenagers and young adults (i.e. in the ALL or SOME groups), then they had fewer unmet support and information needs. Limitations Our definition of exposure to specialist care using Hospital Episode Statistics-determined time spent in hospital was insufficient to capture the detail of episodes or account for the variation in specialist services. Quality of life was measured first at 6 months, but an earlier measure may have shown different baselines. Conclusions We could not determine the added value of specialist cancer care for teenagers and young adults as defined using the teenage and young adult Cancer Specialism Scale and using quality of life as a primary end point. A group of patients (i.e. those defined as the SOME group) appeared to be less advantaged across a range of outcomes. There was variation in the extent to which principal treatment centres for teenagers and young adults were established, and the case study indicated that the culture of teenagers and young adults care required time to develop and embed. It will therefore be important to establish whether or not the evolution in services since 2012–14, when the cohort was recruited, improves quality of life and other patient-reported and clinical outcomes. Future work A determination of whether or not the SOME group has similar or improved quality of life and other patient-reported and clinical outcomes in current teenage and young adult service delivery is essential if principal treatment centres for teenagers and young adults are being commissioned to provide ‘joint care’ models with other providers. Funding This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 9, No. 12. See the NIHR Journals Library website for further project information.

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“…Funding was awarded from Marie Curie in 2013 (grant reference 15722). The study is complete 87,88 BRIGHTLIGHT extension study…”

Section: Collaboration With Teams In Leeds and Southamptonmentioning

confidence: 99%

Specialist cancer services for teenagers and young adults in England: BRIGHTLIGHT research programme

Taylor

Fern

Barber

et al. 2021

Programme Grants Appl Res

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“…Clearly, for these participants, communication had not always been as effective as they might have wanted it to be, leaving them with unanswered questions about their experiences. Areas of particular need were conversations surrounding poor prognosis and end‐of‐life care, where understanding preferences and the kinds of conversations that are best facilitated with young people are only beginning to be fully examined 16,17 . Here again, participants' comments point to the need for a ‘long‐term’ communicative relationship, rather than ‘one‐off’ discussions 18 .…”

Section: Discussionmentioning

confidence: 99%

“…Areas of particular need were conversations surrounding poor prognosis and end‐of‐life care, where understanding preferences and the kinds of conversations that are best facilitated with young people are only beginning to be fully examined. 16 , 17 Here again, participants' comments point to the need for a ‘long‐term’ communicative relationship, rather than ‘one‐off’ discussions. 18 Content is seen as one element, albeit an important element of the conversation, timing and facilitation are also essential components of communication.…”

Section: Discussionmentioning

confidence: 99%

Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey

Fern

Phillips

Gravestock

et al. 2021

Health Expectations

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Objective We conducted a UK‐wide survey to identify the top 10 research questions for young people's cancer. We conducted secondary analysis of questions submitted, which were ‘out‐of‐scope’ of the original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer. Design James Lind Alliance Priority Setting Partnership. Participants Young people aged 13‐24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population. Methods Eight hundred and fifty‐five potential research questions were submitted, and 326 were classified as ‘out‐of‐scope’. These questions, along with 49 ‘free‐text’ comments, were analysed using thematic analysis. Results The 375 out‐of‐scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long‐term effects and aftercare support; family support; financial impact; end‐of life care; and research methods and current research. Conclusions The need to tailor services, information and communication is a striking thread evidenced across the ‘out‐of‐scope’ questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes. Patient/public contributions Patients and carers were equal stakeholders throughout.

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“…Moreover, there is evidence to suggest that the needs of these patients in the final days of life are not being met. 4 To be sure, the issues faced by AYA patients are complex, with psychosocial, interpersonal, and developmental challenges not typically encountered by other patient populations. 5,6 These, in turn, present difficulties for health care professionals involved in AYA patient care.…”

Section: Introductionmentioning

confidence: 99%

Advance Care Planning for Adolescents and Young Adults with Cancer: A Retrospective Case Note Audit from a Regional Specialist Center in the United Kingdom

Murray

Pettitt²,

Tomas

2021

Journal of Adolescent and Young Adult Oncology

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Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals

Cited by 13 publications

References 27 publications

Specialist cancer services for teenagers and young adults in England: BRIGHTLIGHT research programme

Specialist cancer services for teenagers and young adults in England: BRIGHTLIGHT research programme

Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey

Advance Care Planning for Adolescents and Young Adults with Cancer: A Retrospective Case Note Audit from a Regional Specialist Center in the United Kingdom

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