Host: Jeremy Whelan, University College Hospital
Date and time: Wed 08-Nov-2017, 09:00-11:00
Room: Hall 1C
This session will bring together researchers and clinicians who are leading the way in TYA cancer care around the world. This will include showcasing key results from BRIGHTLIGHT, the NIHR funded research programme evaluating specialised services for TYA cancer in England. This will be accompanied by presentations highlighting innovations in care from North America, Europe and finally presenting the results from the James Lind Alliance priority setting exercise for research in young people in the UK.
Rachel Taylor, UCLH, UK
Rebecca Johnson, Mary Bridge Hospital, USA
Winette van der Graaf, The Institute for Cancer Research, UK
Lorna Fern, NCRI TYA CSG HSR Subgroup, NCRI, UK
The United States (US) defines the AYA age range as 15-39, due to the lack of survival improvement and documented psychosocial challenges of this age group. Facilitated by Teen Cancer America, over 50 clinical AYA programs now exist or are under development at US cancer centers. There is a consortium in Canada to improve and standardize clinical care for AYAs. North American AYA oncology programs offer similar services, summarized by the acronym “FACES(S):” Fertility preservation, Access to Clinical Trials, Expertise in AYA cancers, and Support Services. Designated clinical Space constitutes an additional “S” at the end of the acronym but is currently available at only a few facilities.
Barriers to AYA care are being actively addressed through both infrastructure development and research initiatives. An AYA committee within the National Clinical Trials Network is working to increase clinical trial accrual and promote collaborative design of AYA-relevant clinical trials. Because most US AYAs are treated in local community hospitals rather than academic centers, the needs and experiences of AYAs treated at community cancer centers are now being investigated. Critical Mass, a US not-for profit organization, is tackling legislative barriers by lobbying the US federal government to improve cancer care for AYAs.
BRIGHTLIGHT is an evaluation of teenage and young adult (TYA) cancer services throughout England. Despite national support from clinical teams and the Clinical Research Network, BRIGHTLIGHT recruited 55% of its target sample. We sought to understand healthcare professionals’ perspectives of the challenges to recruitment to this low-risk observational study and thus to provide guidance on recruitment processes for future studies.
Semi-structured telephone interviews with 23 healthcare professionals who had indicated, on an anonymised questionnaire, their willingness to participate. Participants included Principal Investigators and other staff recruiting to BRIGHTLIGHT. Data were analysed using Framework Analysis. Interviews and analysis were carried out by an independent researcher.
The emergent themes were linked to levels of research organisational management, described here using the levels of social network analysis: micro-level (the individual: in this case the target population – young people with cancer); meso-level (the organisation: this related to site of recruitment and those staff responsible for recruitment); and macro-level (the large-scale or global structure; relating to the wider research function of the NHS and associated policies). At the meso-level, professionals’ perceptions of young people and communication between professionals generated age- and cancer-type silos which resulted in recruitment of either children or of adults, but not both by the same team, and only in the cancer-type the recruiting professional was aligned to. At the macro-level the main barrier was discordant configuration of research services which were discordant with clinical services.
This study has identified significant barriers relevant to all studies which aim to recruit patients across multiple tumour types. We suggest that interconnected whole-system changes are required to facilitate the success of interventions designed to improve recruitment. Interventions targeted at study design/management and the micro-level only may be less successful.
BRIGHTLIGHT is the national evaluation of teenage and young adult cancer services in England. In 2005 following the publication of National Institute for Health and Care Excellence (NICE) guidance recommending age-appropriate cancer care for young people aged 16-24 years care for young people was separate to that of children and older adults. This is provided for in 13 teenage and young adult (TYA) Principal Treatment Centres (PTC), with infrastructure developed and funded by Teenage Cancer Trust. Despite NICE guidance and age-appropriate facilities, four key questions remained unanswered:
BRIGHTLIGHT was developed to answer these questions. The study includes four streams of work including an international Delphi survey to define the competence of people providing care to young people, a case study exploring the culture of age-appropriate care, a health economics evaluation and central to the programme is a cohort study, which recruited 1,114 young people from 96 hospitals in England. Recruitment of young people to BRIGHTLIGHT ended in April 2015 and patient-reported data collection is now completed on 830 young people; results are beginning to emerge from the cohort with final results anticipated the end of 2018.
Some evidence exists that young people experience a longer time to cancer diagnosis compared to children and older adults with cancer. Prolonged diagnostic intervals could adversely affect clinical outcomes, and are associated with worse patient experience of cancer care.
We aimed to examine diagnostic timeliness, socio-demographic factors and cancer type for young people participating in the BRIGHTLIGHT cohort.
Diagnostic interval data was analysed diagnostic interval data on 830 young people who completed a face-to-face interview as part of the BRIGHTLIGHT study, for variation in Patient Interval (time from symptom onset to first healthcare presentation), number of pre-referral General Practitioner (GP) consultations and total interval (time from symptom onset to diagnosis).
Among participants, 27% experienced patient intervals of greater than >1 month and 35% of those consulting a GP had 3+ pre-referral consultations. The median total interval was 62 days. There was statistically significant variation (joint p-values<0.05) in 3+ consultations and total interval by gender and cancer site.
These data provide a benchmark for diagnostic timeliness for young people with cancer and identifies subgroups at particular risk of a prolonged diagnostic journey. Further work is required to prioritise and stratify early diagnosis initiatives for these subgroups and identify outcomes associated with diagnostic intervals.