BACKGROUND Survivors of childhood brain tumours are at risk of poor health-related quality of life (HRQoL). Appropriate and relevant measures can be used to monitor HRQoL so that timely interventions may be made for issues thus identified. We had previously selected patient-reported outcome measures (PROMs) with good psychometric properties that had emerged as well-suited for this use in two systematic reviews. The aim of the present study was to ascertain the views of families regarding the suitability of the selected measures for use in paediatric neuro-oncology follow-up clinics. These views were then used to inform the choice of PROMs for use on the KLIK PROM portal, a website designed to gather HRQoL information from families. MATERIAL AND METHODS As part of the PROMOTE study, we used a multi-centre, multi-informant, cross-sectional, qualitative methods research design. Using ‘think aloud’ audio-recorded interviews, children aged 8–17 years diagnosed within the previous five years with a brain tumour, off treatment and receiving outpatient care, and their parents, were shown a total of nine PROMs and asked to express their views on which they preferred. Detailed notes were made of all audio-recordings by two independent researchers. The final choice of PROMs to be included on the KLIK PROM portal was agreed through discussion of the PROMs selected by families with an expert panel of clinicians, researchers, and parent representatives. RESULTS 16 children and 17 parents participated and of these 2 children and 2 parents did not express a preference. The Pediatric Quality of Life Inventory (PedsQL) Core module was the most popular among the children and parents with 7/14 (50%) of children selecting it as either their 1st or 2nd choice citing that they liked the questions and felt them to be most relevant to them, and 8/15 (53%) of parents citing that it was easy, quick and simple, the wording was easy, and they liked the questions about emotional, social, and school functioning. The least popular questionnaires, with no participants selecting them as first choices, were the Kidscreen-10 and the Health Utilities Index. The latter 2 were selected only as 2nd or lower choices by 1 child and 3 parents respectively. CONCLUSION The PROMs that were finally selected for the KLIK PROM portal were the parent- and child-report PedsQL-Core measures of HRQoL due to their good psychometric properties, family and clinician preference and perceived relevance to follow-up care, and for clinical utility on the KLIK PROM portal.

中文翻译：

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P06.03 儿童、父母和临床医生选择用于儿科神经肿瘤门诊随访的患者报告结果测量

背景 儿童脑肿瘤的幸存者面临健康相关生活质量 (HRQoL) 差的风险。可以使用适当和相关的措施来监测 HRQoL，以便对由此发现的问题进行及时的干预。我们之前选择了具有良好心理测量特性的患者报告结果测量 (PROM)，这些测量结果在两项系统评价中非常适合这种用途。本研究的目的是确定家庭对所选措施是否适用于儿科神经肿瘤随访诊所的看法。然后，这些视图被用于告知选择在 KLIK PROM 门户上使用的 PROM，该网站旨在从家庭收集 HRQoL 信息。材料和方法 作为 PROMOTE 研究的一部分，我们使用了多中心、多信息、横断面、定性方法研究设计。使用“大声思考”的录音采访，在过去五年内被诊断出患有脑瘤、停止治疗并接受门诊治疗的 8-17 岁儿童及其父母，总共被展示了 9 个 PROM，并被要求表达他们的想法。他们喜欢的观点。两名独立研究人员对所有录音进行了详细记录。通过与临床医生、研究人员和家长代表组成的专家小组讨论家庭选择的 PROM，最终选择包含在 KLIK PROM 门户中的 PROM。结果 16 名儿童和 17 名家长参与其中，其中 2 名儿童和 2 名家长没有表达偏好。儿科生活质量量表 (PedsQL) 核心模块在儿童和家长中最受欢迎，7/14 (50%) 的儿童选择它作为他们的第一或第二选择，理由是他们喜欢这些问题并认为它们是与他们最相关，8/15 (53%) 的家长表示这很容易、快速和简单，措辞简单，他们喜欢关于情感、社交和学校运作的问题。最不受欢迎的问卷是 Kidscreen-10 和 Health Utilities Index，没有参与者选择它们作为首选。后两者分别被1个孩子和3个家长选择为第二或更低的选择。结论 最终为 KLIK PROM 门户选择的 PROM 是 HRQoL 的父子报告 PedsQL-Core 测量值，因为它们具有良好的心理测量特性，