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.Data source
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.Study design
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.Principal findings
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.Conclusions
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.