Department of Epidemiology and Cancer Control, St Jude Children's Research Hospital, Memphis, Tennessee, USA.
Clinical Outcomes Solutions, Chicago, Illinois, USA.
BMJ Open. 2020 May 17;10(5):e032414. doi: 10.1136/bmjopen-2019-032414.
Content elucidation for patient-reported outcomes (PROs) in paediatric cancer survivorship is understudied. We aimed to compare differences in the contents of five PRO domains that are important to paediatric cancer survivorship through semistructured interviews with paediatric cancer survivors and caregivers, and identified new concepts that were not covered in the item banks of the Patient-Reported Outcomes Measurement Information System (PROMIS).
Semistructured interviews to collect qualitative PRO data from survivors and caregivers.
A survivorship care clinic of a comprehensive cancer centre in the USA.
The study included 51 survivors (<18 years old) and 35 caregivers who completed interviews between August and December 2016. Content experts coded the transcribed interviews into 'meaningful concepts' per PROMIS item concepts and identified new concepts per a consensus. Frequencies of meaningful concepts used by survivors and caregivers were compared by Wilcoxon rank-sum test.
For pain and meaning and purpose, 'Hurt a lot' and 'Purpose in life' were top concepts for survivors and caregivers, respectively. For fatigue and psychological stress, 'Needed to sleep during the day'/'Trouble doing schoolwork' and 'Felt worried' were top concepts for survivors, and 'Felt tired' and 'Felt distress'/'Felt stressed' for caregivers. Survivors reported more physically relevant contents (eg, 'Hard to do sport/exercise'; 0.78 vs 0.23, p=0.007) for pain, fatigue and stress, whereas caregivers used more emotionally relevant concepts (eg, 'Too tired to enjoy things I like to do'; 0.31 vs 0.05, p=0.025). Both groups reported positive thoughts for meaning and purpose (eg, 'Have goals for myself'). One (psychological stress, meaning and purpose) to eleven (fatigue) new concepts were generated.
Important PRO contents in the form of meaningful concepts raised by survivors and caregivers were different and new concepts emerged. PRO measures are warranted to include survivorship-specific items by accounting for the child's and the caregiver's viewpoints.
儿童癌症生存者报告的结果（PROs）的内容阐明研究不足。我们旨在通过对儿童癌症幸存者和照顾者进行半结构化访谈，比较对儿童癌症生存者重要的五个 PRO 领域的内容差异，并确定患者报告的结果测量信息系统（PROMIS）项目库中未涵盖的新概念。
半结构化访谈，从幸存者和照顾者那里收集定性 PRO 数据。
美国综合癌症中心的生存护理诊所。
研究包括 2016 年 8 月至 12 月期间完成访谈的 51 名幸存者（<18 岁）和 35 名照顾者。内容专家根据 PROMIS 项目概念将转录访谈内容编码为“有意义的概念”，并根据共识确定新概念。使用幸存者和照顾者的有意义概念的频率通过 Wilcoxon 秩和检验进行比较。
对于疼痛和意义和目的，“非常痛苦”和“生活目的”分别是幸存者和照顾者的首要概念。对于疲劳和心理压力，“白天需要睡觉”/“难以完成学业”和“感到担忧”是幸存者的首要概念，而“感到疲倦”和“感到苦恼”/“感到压力”则是照顾者的首要概念。幸存者报告了更多与身体相关的内容（例如，“难以进行运动/锻炼”；0.78 与 0.23，p=0.007）用于疼痛、疲劳和压力，而照顾者则使用了更多与情感相关的概念（例如，“太累了，无法享受我喜欢做的事情”；0.31 与 0.05，p=0.025）。两组均报告了有意义和目的的积极想法（例如，“为自己设定目标”）。共提出了一个（心理压力、意义和目的）到十一个（疲劳）的新概念。
幸存者和照顾者提出的重要 PRO 内容以有意义的概念的形式呈现，且出现了新概念。需要制定 PRO 措施，同时考虑儿童和照顾者的观点，纳入特定于生存者的项目。
