Department of Public and Occupational Health, Amsterdam Public Health Research Institute, Amsterdam UMC, VU University, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands.
Coronel Institute of Occupational Health, Amsterdam Public Health Research Institute, Amsterdam UMC, AMC, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.
Qual Life Res. 2019 Aug;28(8):2233-2246. doi: 10.1007/s11136-019-02179-9. Epub 2019 Apr 16.
The purpose of this study was to improve the measurement of participation. Research questions were as follows: (1) What constitutes participation according to adults? (2) Do they mention participation subdomains that are not covered in the Patient-Reported Outcomes Measurement Information System (PROMIS) item bank "Ability to Participate in Social Roles and Activities"?
Semi-structured interviews were conducted with 46 adults from the general population. Interviews were thematically analysed using the International Classification of Functioning, Disability and Health (ICF) as conceptual framework. Thereafter, assigned codes were compared to PROMIS item bank.
Participants mentioned a variety of participation subdomains that were meaningful to them, such as socializing and employment. All subdomains could be classified into the ICF. The following subdomains were not covered by the PROMIS item bank: acquisition of necessities, education life, economic life, community life, and religion and spirituality. Also a distinction between remunerative (i.e. paid) and non-remunerative (i.e. unpaid) employment, and domestic life was missing. Several ICF sub-codes were not mentioned, such as ceremonies.
Many participation subdomains were mentioned to be meaningful. As several of these subdomains are not covered in the PROMIS item bank, it may benefit from extension with new (patient-)reported subdomains of participation.
本研究旨在改进参与度的测量。研究问题如下：(1) 成年人认为参与度包含哪些内容？(2) 他们是否提到了患者报告结局测量信息系统（PROMIS）项目库“参与社会角色和活动的能力”中未涵盖的参与度亚领域？
对来自普通人群的 46 名成年人进行了半结构式访谈。使用国际功能、残疾和健康分类（ICF）作为概念框架对访谈进行主题分析。然后，将分配的代码与 PROMIS 项目库进行比较。
参与者提到了各种对他们有意义的参与度亚领域，如社交和就业。所有亚领域都可以归入 ICF。以下亚领域未涵盖在 PROMIS 项目库中：获取必需品、教育生活、经济生活、社区生活、宗教和精神生活。也缺少有偿（即有薪）和无偿（即无薪）就业之间的区别，以及对家庭生活的描述。一些 ICF 子代码未被提及，如仪式。
许多参与度亚领域被认为具有意义。由于这些亚领域中有几个未涵盖在 PROMIS 项目库中，因此可能需要扩展新的（患者）报告的参与度亚领域。
