Taylor Rachel M, Fern Lorna A, Solanki Anita, Hooker Louise, Carluccio Anna, Pye Julia, Jeans David, Frere-Smith Tom, Gibson Faith, Barber Julie, Raine Rosalind, Stark Dan, Feltbower Richard, Pearce Susie, Whelan Jeremy S
Cancer Clinical Trials Unit University College London Hospitals NHS Foundation Trust, London, UK.
School of Health & Social Care, London South Bank University, London, UK.
Health Qual Life Outcomes. 2015 Jul 28;13:107. doi: 10.1186/s12955-015-0312-7.
Patient 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.
A 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.
Stage 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.
Collaborating 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.
除了更传统的临床终点外，患者体验越来越多地被用作高质量医疗的指标。调查通常被认为是获取患者体验的合适方法。目前尚无专门针对确诊患癌的13至24岁青少年及青年（AYA）的经过验证的患者体验调查问卷。本文描述了为开发和验证一份针对患癌AYA的描述性患者体验调查问卷所开展的早期工作，该问卷涵盖了他们的癌症经历和与年龄相关的问题。我们的目标是与年轻人共同开发一份对AYA有意义且相关的体验调查问卷，用于纵向队列研究（BRIGHTLIGHT），确保高接受度以最大限度地提高研究保留率。
采用三阶段方法：第一阶段包括制定概念框架、进行文献/互联网搜索以及确定调查问卷的内容效度；第二阶段确认管理方法的可接受性，由四个焦点小组组成，包括11名年轻人（14 - 25岁）、三名家长和两名兄弟姐妹；第三阶段通过对23名14至24岁的年轻人进行电话认知访谈来确定调查问卷的理解情况。
第一阶段：根据年轻人癌症及治疗相关经历的定性报告，提出了238个问题。第二阶段：焦点小组确定了三个核心主题：（i）直接影响年轻人的问题，例如治疗相关疲劳对完成调查问卷能力的影响；（ii）与实际调查问卷相关的问题，例如匿名回答问题的能力；（iii）管理问题，例如一些支持文件的格式令人困惑。第三阶段：认知访谈表明理解程度较高，只需对调查问卷进行 minor 修订。
与患癌年轻人合作使得能够开发出一份对年轻人有意义且能考察患者体验以及与专科癌症护理相关结果的调查问卷。在整个调查问卷开发过程中让年轻人参与确保了内容能恰当反映他们的经历且易于理解。BRIGHTLIGHT调查问卷是为一个特定研究项目开发的，但有潜力用作AYA癌症调查问卷来评估患者体验及他们所接受的护理。
