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Abstract
Introduction Idiopathic pulmonary fibrosis (IPF), a progressive life-limiting lung disease affects approximately 128 000 newly diagnosed individuals in the USA annually. IPF, a disease of ageing associated with intense medical and financial burden, is expected to grow in incidence globally. Median survival from diagnosis is 3.8 years, and many of these patients succumb to a rapid death within 6 months. Despite the fatal prognosis, we have found that patients and caregivers often fail to understand the poor prognosis as the disease relentlessly progresses. Based on feedback from patients and families living with IPF, we developed the S-Symptom Management, U-Understanding the Disease, P-Pulmonary Rehabilitation, P-Palliative Care, O-Oxygen Therapy, R-Research Considerations and T-Transplantation (‘SUPPORT') intervention to increase knowledge of the disease, teach self-management strategies and facilitate preparedness with end of life (EOL) planning.
Methods This study is a randomised trial to test the efficacy of SUPPORT intervention compared with routine care in patients with IPF and their caregivers delivered after three clinical visits. We are recruiting a cohort of 64 new IPF patient/caregiver dyads (32 for each dyad).
Results The trial will evaluate whether the SUPPORT intervention decreases stress, improves symptom burden, quality of life, preparedness and advance care planning for patients and caregivers, quality of dying and death for caregivers if the patient dies during the course of the study, as well as assess the impact of primary palliative care on healthcare resource use near the EOL.
Conclusion By increasing knowledge of the disease, teaching self-management strategies and facilitating preparedness with EOL planning, we will address a critical gap in the care of patients with IPF.
Trial registration number NCT02929017; Pre-results.
- idiopathic pulmonary fibrosis
- palliative care
- caregivers
- quality of life
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Footnotes
Contributors KOL: conception of idea and design for this clinical trial, manuscript generation; MQR: contributed crucial intellectual content for design of this clinical trial, manuscript review and project oversight; MN: statistical guidance, manuscript review and contributed crucial intellectual content; KFG, DJK: contributed crucial intellectual content and manuscript review; MJK (research coordinator) and SK (nurse interventionist): both provided topic insight. All authors contributed to and approved the final version.
Funding US Department of Health and Human Services, National Institutes of Health, National Institute of Nursing Research 1K23NR016276-01A1, Three Lakes Partners, LLC, and The University of Pittsburgh Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease at UPMC.
Competing interests None declared.
Patient consent None.
Ethics approval The research protocol was approved by the University of Pittsburgh Institutional Review Board PRO16070539 and the trial is registered as NCT02929017 on clinicaltrials.gov.
Provenance and peer review Not commissioned; externally peer reviewed.