Louise Hooker

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

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.

Young people describe their prediagnosis cancer experience

Young people often report a protracted journey to diagnosis and frequently report perceived delays. This study was undertaken to increase understanding of the self‐reported prediagnosis experiences in young people with a non‐haematological cancer, as close as possible to the time of diagnosis.

Web-based self-management for young cancer survivors: consideration of user requirements and barriers to implementation

PurposeAs the population of young cancer survivors increases, there is a need to develop alternative ways of providing post-treatment support. Online systems potentially offer self-management and e-learning support following cancer treatment. This research aims to explore the self-management support needs of teenage and young adult cancer survivors and consider whether those needs can be met through a web-based self-management resource.MethodsA mixed methods approach was adopted including an online survey (n = 24), focus groups and interviews with teenage and young adult cancer survivors (n = 7) and interviews with parents of survivors (n = 6), information technology specialists (n = 8) and clinical, nursing and social work professionals (n = 11).ResultsAll stakeholders were supportive of web-based self-management to meet information and support needs that would supplement continued direct interaction with clinical staff. Barriers to implementation were identified in terms of risks to young people, governance issues and the challenges of providing a long-term service.ConclusionComputer access and use amongst teenagers and young adults is commonplace, and there is an expectation that self-management needs will be met at least partially online in the future. There is a desire for online social support through peer interaction as well personal developmental and clinical management. These elements may need to be run through different systems to cater for governance requirements.Implications for Cancer SurvivorsAn online self-management system could provide support at a number of different levels. The barriers to implementation should be addressed, to ensure that survivors can be supported in this way in the future.

Mapping Adolescent Cancer Services: How Do Young People, Their Families, and Staff Describe Specialized Cancer Care in England?

Background: Specialized cancer services for adolescents and young adults (AYAs) are being developed in a number of countries to address the particular needs of this population. However, the evidence base to inform service design and associated care delivery is inadequate. Objective: The aim of this study was to undertake a mapping study to identify the main components of AYA cancer care to be studied further to reflect the range of approaches to service delivery currently provided in England. Methods: Semistructured interviews were conducted with young people, their family members, and staff in 11 AYA principal treatment centers. Using different levels of extraction, these data were drawn together to illuminate the main components of AYA cancer care and the range of approaches to service delivery. Results: Young people, family members, and staff consistently identified and valued similar areas of AYA cancer care: caring and supportive staff, activities designed for AYAs, and an environment that feels like home. Conclusion: The mapping exercise successfully informed the selection of 4 sites for an in-depth case study. The main components of specialized AYA care have been described. Implications for Practice: This description can assist clinical teams interested in developing or refining their approach to AYA cancer care. It could also offer a way to agree priorities, based on the key components young people consider as being essential for their care, and facilitate services to benchmark against these key components, and it could also go some way to address international AYA goals to support global change to reduce the current disparities in care.

Cancer-Related Fatigue in Adolescents and Young Adults After Cancer Treatment: Persistent and Poorly Managed

Cancer-related fatigue is the most prevalent and distressing symptom experienced by adolescents and young adults (AYAs). An electronic survey was undertaken to ascertain current fatigue management and perceptions of its effectiveness. Eighty-five percent of responders (68/80) experienced fatigue, and it was worse more than 1 year after cancer treatment ended, compared to <1 year (p = 0.007). Forty-one percent received no fatigue management. Although advice to exercise was the most frequent intervention, the greatest impact of fatigue was on the ability to exercise and most did not find exercise advice helpful. Early intervention is warranted, supporting AYAs to persevere with increasing activity.

Exploring the need for, and feasibility of, a web-based self-management resource for teenage and young adult cancer survivors in the UK

The growth in social networking sites and online forums make the internet a potential platform to be considered for the provision of self-management and e-learning support to young people following cancer treatment. However, the feasibility and potential barriers to this as a post treatment option should be considered. A mixed methods approach was adopted that included an online survey, focus groups and interviews with cancer survivors, their parents, and information technology, clinical and social work professionals to consider the potential of a web-based self-management resource. Barriers were identified to the delivery of care using this method. Developing such a self-management system requires close working between IT and clinical staff, alongside patient representation and usability expertise. As computer access and use amongst this group is commonplace, there is an expectation that self-management needs will be met at least partially in this way in the future.

Commentary to “Policy and practice in teenage and young adult cancer care in England: Looking to the future”

Pearce (2009) considers developments in cancer services for teenagers and young adults (TYA) in England within the context of health services policy, most particularly the National Institute of Health and Clinical Excellence (NICE) Improving Outcomes Guidance for Children and Young People (NICE, 2005). In providing an overview of important aspects of epidemiology of cancer in this patient group and the evidence base and published expert opinion related to some of the key components of services and clinical practice, many of the areas of need, progress and the challenges ahead are highlighted. The focus of NICE cancer service guidance is to advise on the commissioning of services and is therefore different from clinical practice guidelines. The Children and Young People’s Improving Outcomes Guidance recommendations focus on the planning, commissioning and organisation of those aspects of services that are likely to significantly impact upon outcomes. However, the transformations required to deliver IOG-compliant services for young people require a significant response from practitioners as providers of services, to change established clinical practices and develop new approaches to delivering care and support in hospital and community settings. It is important to view delivery of ongoing improvements in cancer services for young people within the broad context of both health services policy and cancer policy. Services and practice related to young people with malignancy cannot be delivered in isolation from overall healthcare policy and cancer strategy, or without regard to developments in the provision of children and young people’s health care generally. Particularly in relation to young adults, the delivery structures and processes of adult cancer services need to be reflected in collaborative TYA service models to provide both disease-specific expertise and age-appropriate cancer care. The National Service Framework (NSF) for children, young people and maternity services (Department of Health, 2004) established national standards for services for children and young people (CYP). Although it specifically relates to young people before their 19th birthday, the NSF was enshrined within the