Elsevier

Heart & Lung

Volume 39, Issue 4, July–August 2010, Pages 304-313
Heart & Lung

Issues in Pulmonary Nursing
Impact of a disease-management program on symptom burden and health-related quality of life in patients with idiopathic pulmonary fibrosis and their care partners

https://doi.org/10.1016/j.hrtlng.2009.08.005Get rights and content

Background

Patients were recruited from the Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease, located within the University of Pittsburgh Medical Center. Idiopathic pulmonary fibrosis results in scarring of the lung and respiratory failure, and has a median survival of 3 to 5 years from the time of diagnosis. The purpose of this study was to determine whether patients with idiopathic pulmonary fibrosis and their care partners could be more optimally managed by a disease-management intervention entitled “Program to Reduce Idiopathic Pulmonary Fibrosis Symptoms and Improve Management,” which nurses delivered using the format of a support group. We hypothesized that participation would improve perceptions of health-related quality of life (HRQoL) and decrease symptom burden.

Methods

Subjects were 42 participants randomized to an experimental (10 patient/care partner dyads) or control (11 patient/care partner dyads) group. Experimental group participants attended the 6-week program, and controls received usual care. Before and after the program, all participants completed questionnaires designed to assess symptom burden and HRQoL. Patients and care partners in the intervention group were also interviewed in their home to elicit information on their experience after participating in the Program to Reduce Idiopathic Pulmonary Fibrosis Symptoms and Improve Management.

Results

After the intervention, experimental group patients rated their HRQoL less positively (P = .038) and tended to report more anxiety (P = .077) compared with controls. Care partners rated their stress at a lower level (P = .018) compared with controls. Course evaluations were uniformly positive. Post-study qualitative interviews with experimental group participants suggested benefits not exemplified by these scores. Patient participants felt less isolated, were able to put their disease into perspective, and valued participating in research and helping others.

Conclusion

Further exploration of the impact of disease-management interventions in patients with advanced lung disease and their care partners is needed using both qualitative and quantitative methodology. Disease-management interventions have the potential to positively affect patients with advanced lung disease 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.

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