Anthony Samantha J, Selkirk Enid, Sung Lillian, Klaassen Robert J, Dix David, Klassen Anne F
Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
Division of Haematology/Oncology, Peter Gilgan Centre for Research and Learning, The Hospital for Sick Children, 686 Bay Street - 6.9710, Toronto, ON, M5G 0A4, Canada.
Qual Life Res. 2017 Feb;26(2):273-281. doi: 10.1007/s11136-016-1393-4. Epub 2016 Aug 24.
The assessment of quality of life (QOL) is key within pediatric oncology and requires a clearly defined construct of QOL. The purpose of our study was: (1) to conduct a qualitative study to inform the theoretical underpinnings of QOL and (2) to determine the appropriateness of patient-reported outcome (PRO) instruments to assess and evaluate QOL in pediatric cancer patients and survivors.
The study used an interpretative description approach. Children diagnosed with childhood cancer, aged 8-18 years, were recruited from four Canadian hospitals. Semi-structured interviews were completed, transcribed verbatim and coded through methods of constant comparison. In-depth analysis facilitated a comparison between emerging themes and the content of commonly used PRO instruments.
Thirty-seven children (19 females; 51 %) participated. The mean age was 13 years, and 19 (51 %) participants were post-treatment. Participant experiences reflected notions of positive and negative duality, including: maintaining physical functioning but longing for the ability to participate in activities; experiencing a new level of intimacy with family and friends amidst isolation; and developing positivity amidst anger, sadness and lingering worry. Analysis showed that existing PRO instruments are missing concerns specific to this population and contain content not reflective of the QOL experiences of childhood cancer patients and survivors.
Our research highlights important problems with content validity of existing PRO scales, indicating that the tools we have to date have limited utility in research and clinical practice. The development of a new PRO instrument should be considered to ensure that content validity is achieved.
生活质量（QOL）评估是儿科肿瘤学的关键内容，需要对生活质量有明确定义的概念。我们研究的目的是：（1）开展一项定性研究，为生活质量的理论基础提供依据；（2）确定患者报告结局（PRO）工具在评估和评价儿科癌症患者及幸存者生活质量方面的适用性。
本研究采用解释性描述方法。从加拿大的四家医院招募了8至18岁被诊断为儿童癌症的儿童。完成了半结构化访谈，逐字转录并通过持续比较法进行编码。深入分析有助于比较新出现的主题与常用PRO工具的内容。
37名儿童（19名女性；51%）参与了研究。平均年龄为13岁，19名（51%）参与者已接受治疗。参与者的经历反映了正负二元性的概念，包括：保持身体功能但渴望参与活动的能力；在隔离中与家人和朋友体验到新的亲密程度；在愤怒、悲伤和挥之不去的担忧中培养积极心态。分析表明，现有的PRO工具缺少针对该人群的特定关注点，且包含的内容不能反映儿童癌症患者及幸存者的生活质量体验。
我们的研究突出了现有PRO量表在内容效度方面的重要问题，表明我们目前拥有的工具在研究和临床实践中的效用有限。应考虑开发一种新的PRO工具，以确保实现内容效度。
