Wyrwich Kathleen W, Tardino Vicki M
Department of Research Methodology, Saint Louis University, 3545 Lafayette Ave., Room 370, Saint Louis, MO 63104-1399, USA.
Qual Life Res. 2006 Aug;15(6):995-1004. doi: 10.1007/s11136-006-0050-8.
Several methods currently used for determining meaningful or important change in health-related quality of life (HRQoL) measures are anchored by global transition items. It can be empirically demonstrated that patients' responses to these gold standards for change do not adequately incorporate the prior condition, yet these transition items play an influential role in patient-clinician communications and cannot be disregarded. This follow-up study queried patients to better understand how they ascertained their transition assessments.
Prior to their qualitative interviews, the 41 participants in this study had completed 1 year of enrollment in a clinical study with bi-monthly HRQoL telephone interviews that included the SF-36 and a disease-specific HRQoL instrument (asthma, COPD, or heart disease), as well as global transition assessments for each instruments domains.
We used face-to-face cognitive interview and the think aloud approaches to obtain qualitative clues for understanding patient reports of HRQoL changes over time. Interview transcripts were coded using the four components of the Rapkin-Schwarz Appraisal Model: frame of reference; sampling strategy; standards of comparison; and combinatory algorithm.
Patients' explanations for determining global transition item responses often focused on current mobility and fatigue patterns, physicians' statements about their conditions, comparisons of their current states with the prior health conditions, and strong personal convictions that reflected a resistance to voicing any emotional changes. Patients also expressed primary health concerns, like back pain, that were not related to the chronic conditions (asthma, COPD or heart disease) under investigation.
HRQoL studies and patient-clinician communications that incorporate global transition assessments to anchor the interpretations of HRQoL changes should also consider additional relevant questions to understand the process patients uses to appraise and report changes in HRQoL.
目前用于确定健康相关生活质量（HRQoL）测量中有意义或重要变化的几种方法以整体转变项目为依据。经验表明，患者对这些变化的金标准的反应未能充分纳入先前状况，但这些转变项目在医患沟通中发挥着重要作用，不容忽视。这项随访研究对患者进行询问，以更好地了解他们如何确定自己的转变评估。
在进行定性访谈之前，本研究的41名参与者已参加一项临床研究满1年，每两个月进行一次HRQoL电话访谈，访谈内容包括SF-36和特定疾病的HRQoL工具（哮喘、慢性阻塞性肺疾病或心脏病），以及对每个工具领域的整体转变评估。
我们采用面对面认知访谈和出声思考法，以获取定性线索，以了解患者关于HRQoL随时间变化的报告。访谈记录使用Rapkin-Schwarz评估模型的四个组成部分进行编码：参照框架；抽样策略；比较标准；以及组合算法。
患者对确定整体转变项目反应的解释通常集中在当前的活动能力和疲劳模式、医生对其病情的陈述、将当前状态与先前健康状况进行比较，以及强烈的个人信念，这些信念反映出他们不愿表达任何情绪变化。患者还表达了与正在调查的慢性疾病（哮喘、慢性阻塞性肺疾病或心脏病）无关的主要健康问题，如背痛。
纳入整体转变评估以锚定HRQoL变化解释的HRQoL研究和医患沟通，也应考虑其他相关问题，以了解患者评估和报告HRQoL变化所采用的过程。
