Department of Psychology, Children's Hospital, London Health Sciences Centre, London, Ontario, Canada.
Pediatr Blood Cancer. 2014 Oct;61(10):1840-5. doi: 10.1002/pbc.25115. Epub 2014 Jun 19.
There is currently no published, validated measures available that comprehensively capture quality of life (QoL) symptoms for children with poor-prognosis malignancies. The pediatric advanced care-quality of life scale (PAC-QoL) has been developed to address this gap. The current paper describes the first two phases in the development of this measure.
The first two phases included: (1) construct and item generation, and (2) preliminary content validation. Domains of QoL relevant to this population were identified from the literature and items generated to capture each; items were then adapted to create versions sensitive to age/developmental differences. Two types of experts reviewed the draft PAC-QoL and rated items for relevance, understandability, and sensitivity of wording: bereaved parents (n = 8) and health care professionals (HCP; n = 7). Content validity was calculated using the index of content validity (CVI [Lynn. Nurs Res 1986;35:382-385]).
One hundred and forty-one candidate items congruent with the domains identified as relevant to children with advanced malignancies were generated, and four report versions with a 5-choice response scale created. Parent mean scores for importance, understandability, and sensitivity of wording ranged from 4.29 (SD = 0.52) to 4.66 (SD = 0.50). The CVI ranged from 95% to 100%. These steps resulted in reductions of the PAC-QoL to 57-65 items, as well as a modification of the response scale to a 4-choice option with new anchors.
The next phase of this study will be to conduct cognitive probing with the intended population to further modify and reduce candidate items prior to psychometric evaluation.
目前尚无已发表的、经过验证的可全面捕捉预后不良恶性肿瘤儿童生活质量（QoL）症状的测量工具。儿科高级护理生活质量量表（PAC-QoL）正是为了弥补这一空白而开发的。本文介绍了该测量工具开发的前两个阶段。
前两个阶段包括：（1）构建和项目生成，以及（2）初步内容验证。从文献中确定了与该人群相关的 QoL 领域，并生成了项目来捕捉每个领域；然后对项目进行改编，以创建对年龄/发育差异敏感的版本。两种类型的专家对草稿 PAC-QoL 进行了审查，并对项目的相关性、可理解性和措辞敏感性进行了评分：丧亲父母（n=8）和医疗保健专业人员（HCP；n=7）。使用内容有效性指数（CVI [Lynn. Nurs Res 1986;35:382-385]）计算内容有效性。
生成了 141 个与被认为与晚期恶性肿瘤儿童相关的领域一致的候选项目，并创建了四个具有 5 个选择响应量表的报告版本。父母对重要性、可理解性和措辞敏感性的平均得分范围为 4.29（SD=0.52）至 4.66（SD=0.50）。CVI 范围从 95%到 100%。这些步骤使 PAC-QoL 的项目数量减少到 57-65 个，并对响应量表进行了修改，采用了新的锚点，将选项数量减少到 4 个。
下一阶段的研究将对目标人群进行认知探测，以进一步修改和减少候选项目，然后进行心理计量评估。
