Hakbijl-van der Wind Aline J, Rohn Edward J, Tate Denise G, van Leeuwen Christel M C, Forchheimer Martin, Stolwijk-Swüste Janneke M, Charlifue Susan, Greve Julia M D, New Peter W, Post Marcel W M
Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands.
Department of Interdisciplinary Health Sciences, Oakland University, Rochester, MI, USA.
Spinal Cord. 2024 Mar;62(3):104-109. doi: 10.1038/s41393-023-00954-7. Epub 2023 Dec 29.
International Classification of Functioning, Disability and Health (ICF) linking study.
Analyze cognitive interview data using the ICF as an analytic framework, to examine aspects of social life relevant to quality of life (QoL) according to people with spinal cord injury or disease (SCI/D). This study builds upon results of an international study about the cross-cultural validity of the International SCI QoL Basic Data Set (QoL-BDS).
Four specialized outpatient clinics in SCI/D rehabilitation, from the US, Brazil and Australia.
Analysis of qualitative data from 39 cognitive interviews with SCI/D patients at least one year post onset. Participants were asked to define their concept of QoL, overall life satisfaction, physical health and psychological health, and other relevant matters. Four independent researchers coded text fragments related to the items, and fragments were linked to ICF chapters d6-d9, following established linking rules.
The proportion of text referring to social life was 35.8% (definition QoL), 24.9% (QoL life as whole), 6.0% (physical health) and 34.9% (psychological health). The most frequent ICF categories were d760 Family relationships, d770 Intimate relationships and d920 Recreation and leisure. Most frequent responded social topics to the 'other issues' item were d770 Intimate relationships, d760 Formal relationships, and d870 Economic self-sufficiency.
The importance of social life aspects to the QoL was highlighted based on responses of SCI/D patients, clearly demonstrated through the ICF linking process. Adding a satisfaction with social life item to the QoL-BDS has made this instrument a more comprehensive measure.
国际功能、残疾与健康分类（ICF）关联研究。
以ICF作为分析框架分析认知访谈数据，根据脊髓损伤或疾病（SCI/D）患者来审视与生活质量（QoL）相关的社会生活方面。本研究基于一项关于国际脊髓损伤生活质量基本数据集（QoL-BDS）跨文化效度的国际研究结果展开。
来自美国、巴西和澳大利亚的四家SCI/D康复专科门诊。
对39名发病至少一年后的SCI/D患者的认知访谈定性数据进行分析。参与者被要求界定他们对生活质量、总体生活满意度、身体健康和心理健康以及其他相关事项的概念。四名独立研究人员对与这些项目相关的文本片段进行编码，并按照既定的关联规则将片段与ICF第d6 - d9章进行关联。
提及社会生活的文本比例在生活质量定义中为35.8%，在整体生活质量中为24.9%，在身体健康中为6.0%，在心理健康中为34.9%。最常见的ICF类别是d760家庭关系、d770亲密关系和d920娱乐与休闲。对“其他问题”项最常提及的社会话题是d770亲密关系、d760正式关系和d870经济自给自足。
基于SCI/D患者的回答，突出了社会生活方面对生活质量的重要性，通过ICF关联过程得到了清晰证明。在QoL-BDS中增加对社会生活的满意度项目，使该工具成为一种更全面的测量方法。
