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

Abstract

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.

An analysis of the development of adolescent and young adult cancer care in the United Kingdom: A Foucauldian perspective

“…Empirical work started to emerge slowly, and early examples include the work of Hollis and Morgan (2001), Lewis, Fallon, van Dongen-Melman, and Barr (2002) and Kelly et al (2004). The scale of empirical research has grown in scope and ambition with the current Brightlight study exploring the benefits of specialist care for AYAs with cancer (Taylor et al, 2015). More recently, the James Lind Alliance (Aldiss et al, 2018) reported after a Priority Setting exercise exercise on the top ten AYA cancer research priorities that identified gaps and unanswered questions in research, the answers to which may reduce the individual and societal burden of young peoples' cancer.…”

Measuring the efficacy of a project for adolescents and young adults with cancer: A study from the Milan Youth Project

“…Our patient satisfaction survey had various weaknesses, particularly the fact that it was answered only by patients involved in the Youth Project activities, who were more likely to have a positive attitude to such initiatives. Far from being a comprehensive qualitative and quantitative survey on the quality of life and psychosocial needs of AYA, as undertaken by other authors, the questionnaire was simply a preliminary tool for collecting positive and negative comments from our patients and involving them in assessing the program. The questionnaire nonetheless revealed our patients’ favorable judgment, particularly as concerns relational aspects, and it further confirms the value of such projects.…”

Association of Self-reported Presenting Symptoms With Timeliness of Help-Seeking Among Adolescents and Young Adults With Cancer in the BRIGHTLIGHT Study

“…This has the benefit of having built-in methods for checking errors and allows routing of questions, automatically eliminating irrelevant questions on the basis of previous answers. The survey instrument development has been described previously 23 ; the survey consists of 15 domains identified by young people as important in their cancer experience, including their experience before diagnosis. The survey questions were mainly read out by the interviewer and answered from a prespecified list, with options for including free text and dates where applicable.…”

“…Information on symptoms experienced before the diagnosis of cancer was ascertained through yes-or-no responses to 16 specified symptoms (patients could respond yes to >1 symptoms), with any other symptoms recorded as free-text responses. 23 Symptoms derived from the free-text information were either recoded as 1 of the 16 specified symptoms, or otherwise collated into a 17th symptom category labeled as other symptoms (eTable 1 in the Supplement ). Patients for whom symptom information was missing (10 patients), not specified (14 patients), or invalid (3 patients) were excluded from analyses (eFigure in the Supplement ).…”