An Introduction to Brightlight on End of Life Care for Young Adults: What Do Young Adults With Cancer and Their Families Need and How Can It Best Be Delivered?

Whelan, Jeremy; Pearce, Shirley; Jones, Louise; Stirling, CM; Hough, Rachael; Riley, Vikky; Fern, Lorna A; Morris, Stephen; Moran, Thomas J.; Tookman, Adrian; Flatley, Mary; Wong, Gabriel H.Z.; Taylor, Rachel

doi:10.1136/bmjspcare-2013-000453b.25

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“…This was a purposeful decision as little is known about end of life experiences in this population and it was felt that a survey may not be the best study design in this instance. An in-depth exploration of end of life experiences is currently underway [ 25 ], which may inform future survey content. However, the experience of those approaching end-of-life will be captured through the longitudinal nature of the study as they continue to participate.…”

Section: Methodsmentioning

confidence: 99%

Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer

Taylor

Fern

Solanki

et al. 2015

Health Qual Life Outcomes

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BackgroundPatient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end–points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13–24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention.MethodsA three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14–25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14–24 years.ResultStage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people’s cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments.ConclusionCollaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive.

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Section: Methodsmentioning

confidence: 99%