PURPOSE 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. METHODS 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. RESULTS 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 R2 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. CONCLUSIONS 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.

中文翻译：

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使患者对与健康相关的生活质量的理解-银屑病和多发性硬化症的混合方法研究。

目的患者对与健康相关的生活质量（HRQoL）的个人理解差异很大，这使得对这种复杂而主观的结构的测量具有挑战性。固定小插曲，即对虚构患者的描述，可以提供对患者个人问卷参考框架，评估过程以及对HRQoL的了解。这项研究分析了患者如何评估小插图的HRQoL。方法这项探索性混合方法研究包括100例患有慢性疾病（50例多发性硬化症（MS）； 50例牛皮癣）的患者。根据文献推荐，开发了十六个渐晕片，每个SF-12v2域两个渐晕片，并在七个健康个体的便利样本中进行了预先测试。患者在SF-12v2上评估了自己的小插图的HRQoL和HRQoL。在半结构化访谈中，他们证明自己的评估是正确的。我们使用线性回归模型对小插图评估与个人特征的关联进行了定量分析，并对评估依据进行了定性分析。结果患者的年龄和疾病是分别进行十次和七次晕影评估的重要（p <0.05）预测指标。较年长的患者认为晕影不那么极端。诊断为MS的患者对他们的评分更高。总体而言，调整后的R2值范围为0.033至0.172。定性地，大多数评级是基于对日常生活中症状或障碍的评估。较少的参与者在个人等级中对HRQoL的不同维度进行了排序，或者认为超出了小插图描述的假设存在障碍。结论对HRQoL的理解可能会有很大差异，并且与个人特征，个人评估策略以及可能的其他内在因素相关，因为所解释的方差很低。因此，使用通用工具仅允许在各个组之间进行有限的比较。