Issues in Pulmonary NursingImpact of a disease-management program on symptom burden and health-related quality of life in patients with idiopathic pulmonary fibrosis and their care partners
Section snippets
Design
This study used a quantitatively driven, concurrent nested mixed-method design with the experimental group receiving the (PRISIM) intervention and the control group receiving usual care only. The study enrolled 42 participants. Ten patient/care partner dyads were randomized to the intervention group, and 11 patient/care partner dyads were randomized to usual care. All patients/care partners completed questionnaires designed to measure anxiety, depression, perceived stress, and HRQoL before and
Quantitative analysis
Baseline demographic and medical profile data were compared using chi-square and t tests, as appropriate. Because differences in intervention and control groups were found in baseline scores for anxiety and the physical aspect of HRQoL, questionnaire responses were analyzed using analysis of covariance (ANCOVA). Theoretically, baseline differences should not occur with randomization. Because such differences were present, ANCOVA was used to control for these initial differences. The Statistical
Discussion
To our knowledge, this study is the first to test the ability of an intervention to decrease symptom burden and improve perceptions of HRQoL for patients with IPF and their care partners. Contrary to expectations, ratings of physical HRQoL were more negative at the conclusion of the intervention and tended to reflect more anxiety. As anticipated, care partners in the intervention group experienced less stress after participation in PRISIM.
Although these findings suggested increased distress,
Limitations
The study was conducted to obtain pilot data for a future study, the sample size was small, and the study was underpowered to detect a difference between groups. Findings need to be confirmed in a larger sample. The requirement to attend multiple sessions was a barrier to recruitment, and an Internet-based intervention may have been more appealing. However, our format had the advantage of promoting discussion among participants and group leaders. Of note, some of the participants traveled 2 to
Conclusions
PRISIM was innovative in its attempt to combine information about disease management with information included in palliative care programs and strategies designed to elicit discussion of preferences in end-of-life decision-making. The program enrolled the care partner and patient in an attempt to enhance sharing on difficult to discuss topics. Although questionnaire responses indicated the intervention tended to negatively affect participants, qualitative data suggested positive benefits.
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Cited by (0)
Funding for this study was provided by the Fairbanks- Horix Foundation.
Work was performed at the University of Pittsburgh Medical Center.
Drs Lindell, Olshansky, Song, Zullo, Gibson, Kaminski, and Hoffman have no conflict of interest.