Steinhauser KE (Durham), Voils CI
(Durham), Bosworth HB
(Durham), Tulsky JT
Clinicians and researchers struggle to identify appropriate validated outcome measures that assess patients’ and families’ experiences at the end of life. Therefore, we developed a measure of quality of experience for families of dying patients (QUAL-E fam) and are validating it with samples of family members of terminally ill veterans. The purpose of this presentation is to present the results of initial instrument development including qualitative data synthesis, instrument drafting, cognitive interviewing, and exploratory factor analyses.
We convened focus groups and in-depth interviews recruited from the Durham VAMC and Duke University Medical Center, stratified by ethnicity and recruitment site, and comprised of family members of patients who have died of chronic disease within a window of six to twelve months prior. These data augmented previously collected patient, family, and provider interviews. After recording and transcribing the interviews, we followed a grounded theory “constant comparisons” analytic method and its related open and axial coding techniques. Subsequently, an intitial instrument was drafted. Techniques of cognitive interviewing were used to refine QUAL-E(fam) item structure and increase scale reliability. The refined QUAL-E(fam) was administered to 143 family members to assess scale structure.
Qualitative data yielded 51 attributes of quality of family experience for patients with serious illness representing six domains: completion, symptoms impact, communication and decision-making, relationship with health care provider, post-death care, and social support. The initial QUAL-E(fam) was administered to 30 subjects for cognitive interviewing. Subsequently, the 35-item QUAL-E(fam) version was administered to 143 caregivers. Following exploratory factor analysis, 25 were retained to represent domains of symptom perception, communication with health care team, quality of care, completion, and caregiver emotional well-being.
The refined QUAL-E(fam), along with comparison is being administered to a second sample of 250 caregivers, to test construct validation.
At least one-third of terminally ill patients are too ill to communicate, yet may represent those in greatest need of individually structured care. In such instances, family members function as decision-makers. A validated measure of the quality of family experience provides a valuable, alternative quality indicator to dying patients’ reports and of the overall quality of palliative care services.