Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Martinistraße 52, 20246, Hamburg, Germany.
Department of Health Sciences, Competence Center Health, Hamburg University of Applied Sciences (HAW), Lohbrügger Kirchstrasse 65, 21033, Hamburg, Germany.
Qual Life Res. 2019 Oct;28(10):2717-2729. doi: 10.1007/s11136-019-02227-4. Epub 2019 Jun 18.
Patients' individual understanding of health-related quality of life (HRQoL) varies widely, making the measurement of this complex and subjective construct challenging. Anchoring vignettes, i.e., descriptions of fictive patients may provide insights into patients' individual questionnaire reference frames, assessment processes, and understanding of HRQoL. This study analyzes how patients assess HRQoL of vignettes.
This exploratory mixed-method study included 100 patients with a chronic disease (50 multiple sclerosis (MS); 50 psoriasis). Sixteen vignettes, two for each domain of the SF-12v2, were developed based on literature recommendations and pretested in a convenience sample of seven healthy individuals. Patients assessed their own HRQoL and HRQoL of the vignettes on the SF-12v2. In semi-structured interviews, they justified their assessments. We quantitatively analyzed associations of vignette assessments with individual characteristics using linear regression models and qualitatively analyzed assessment justifications.
Patients' age and disease were significant (p < 0.05) predictors for ten and seven vignette assessments, respectively. Older patients assessed vignettes being less extreme; patients diagnosed with MS rated them more positively. Overall, adjusted R values ranged from 0.033 to 0.172. Qualitatively, most of the ratings were based on the evaluation of symptoms or impairments in daily life. Fewer participants ranked different dimensions of HRQoL in a personal hierarchy or assumed impairments beyond the vignette description.
The understanding of HRQoL may vary substantially and is associated with individual characteristics, individual assessment strategies, and probably other intrinsic factors as explained variance was quite low. Therefore, usage of generic instruments only allows for limited comparison across groups.
患者对健康相关生活质量（HRQoL）的个体理解差异很大，这使得对这一复杂而主观的概念的测量具有挑战性。锚定情境描述，即虚构患者的描述，可以深入了解患者个体问卷参考框架、评估过程和对 HRQoL 的理解。本研究分析了患者如何评估情境描述的 HRQoL。
这是一项探索性混合方法研究，纳入了 100 名患有慢性疾病的患者（50 名多发性硬化症（MS）；50 名银屑病）。根据文献建议和对 7 名健康个体的预测试，开发了 16 个情境描述，每个情境描述对应 SF-12v2 的两个领域。患者使用 SF-12v2 评估自己的 HRQoL 和情境描述的 HRQoL。在半结构化访谈中，他们为自己的评估提供了理由。我们使用线性回归模型对情境描述评估与个体特征的关联进行了定量分析，并对评估理由进行了定性分析。
患者的年龄和疾病是十个和七个情境描述评估的显著（p<0.05）预测因素。年龄较大的患者评估情境描述时的极端程度较低；被诊断为 MS 的患者对其评价更为积极。总体而言，调整后的 R 值范围从 0.033 到 0.172。定性分析表明，大多数评分是基于对日常生活中症状或功能障碍的评估。较少的参与者根据个人层次结构对不同维度的 HRQoL 进行排名，或假设超出情境描述的功能障碍。
对 HRQoL 的理解可能存在很大差异，并且与个体特征、个体评估策略以及可能的其他内在因素相关，因为解释的方差相当低。因此，使用通用工具只能在有限的程度上进行组间比较。
