Department of Neurology, Division of Pediatric Neurology, 12275Washington University School of Medicine, St Louis, MO, USA.
Trudy Busch Valentine School of Nursing, 7547Saint Louis University, St Louis, MO, USA.
J Child Neurol. 2021 Sep;36(10):901-910. doi: 10.1177/08830738211015016. Epub 2021 May 28.
The objective of this qualitative methods study was to develop the domains and items to support the content validity for the Pediatric Quality of Life Inventory (PedsQL) Multiple Sclerosis Module for youth with pediatric-onset multiple sclerosis.
A literature review of multiple sclerosis-specific questionnaires and clinical research was conducted to generate domains. An expert panel composed of 12 neurologists who were pediatric-onset multiple sclerosis specialists provided feedback on the conceptual framework. Focus interviews with 9 youth with pediatric-onset multiple sclerosis and 6 parents were conducted to develop the relevant domains and item content from the patient and parent perspective. In the cognitive interviews phase, 9 youth with pediatric-onset multiple sclerosis and 6 parents provided feedback on item content, relevance, importance, and understandability of the pediatric-onset multiple sclerosis-specific domains and items. The final interview phase with 5 youth with pediatric-onset multiple sclerosis and 5 parents comprised a pilot testing of the new PedsQL MS Module.
Eighteen domains were derived from the qualitative methods with item content saturation achieved at 100 items based on 40 interviews with 23 youth with pediatric-onset multiple sclerosis aged 10-21 years and 17 parents. The domains derived include general fatigue, sleep/rest fatigue, cognitive functioning, tingling sensations, numbness sensations, physical weakness, pain, speech, balance, fine motor, vision, urination, constipation, bowel incontinence, worry, communication, treatment, and medicines.
Qualitative methods involving 23 youth with pediatric-onset multiple sclerosis and 17 parents in the domain and item development process support the content validity for the new PedsQL MS Module. Future plans include a national field test of the PedsQL MS Module scales and items.
本定性方法研究的目的是开发儿科生存质量量表多发性硬化模块（PedsQL MS Module）的领域和条目，以支持其针对儿科发病多发性硬化青少年的内容效度。
对多发性硬化症特定问卷和临床研究进行文献回顾，以生成领域。由 12 位神经病学家组成的专家小组（多发性硬化症儿科专家）提供了对概念框架的反馈。对 9 名儿科发病多发性硬化症青少年和 6 名家长进行焦点访谈，从患者和家长的角度开发相关领域和条目内容。在认知访谈阶段，9 名儿科发病多发性硬化症青少年和 6 名家长对儿科发病多发性硬化症特定领域和条目的内容、相关性、重要性和可理解性提供了反馈。最后，对 5 名儿科发病多发性硬化症青少年和 5 名家长进行了访谈，对新的 PedsQL MS 模块进行了试点测试。
通过定性方法得出了 18 个领域，基于对 23 名 10-21 岁儿科发病多发性硬化症青少年和 17 名家长的 40 次访谈，共获得 100 个项目的条目内容饱和度。得出的领域包括一般疲劳、睡眠/休息疲劳、认知功能、刺痛感、麻木感、身体虚弱、疼痛、言语、平衡、精细运动、视力、排尿、便秘、肠失禁、担忧、沟通、治疗和药物。
涉及 23 名儿科发病多发性硬化症青少年和 17 名家长的定性方法，支持了新的 PedsQL MS 模块的内容效度。未来计划包括对 PedsQL MS 模块量表和条目的全国现场测试。
