Abstract

Background Patients with Idiopathic Pulmonary Fibrosis (IPF) and their caregivers have unmet needs regarding knowledge of their disease, self-management strategies, and preparedness for end-of-life. A nurse-led, evidence-based intervention ?Program of SUPPORT? has been adapted to Dutch

AimThe aim of this study was to develop an integrative palliative care intervention for patients with progressive pulmonary fibrosis and their partners/informal care givers applicable for the Dutch Health care setting

MethodsFor the development of this intervention, the Medical Research Council Framework for developing complex intervention is used. The first phase, development of a complex intervention, was constructed of 3 parts; chart review, literature review and qualitative interviews with patients, partners and healthcare professionals. The development phase is closed with a new round of interview and focus groups with patients and healthcare professionals to get consensus about the intervention.

ResultsThe multi-dimensional intervention exists of a translated and adjusted version of the SUPPORT? booklet. To fit the needs of patients and clinicians, a stepwise symptom management (with multidimensional assessment), advance care planning and the use of Patient Reported Outcome Measures (for patients and partners) in the consult with pulmonologist and nurse

ConclusionA complex, multicomponent intervention is developed using perspectives of patients, partners and healthcare professionals. This intervention needs to be tested on feasibility before implementing in the usual care for patients with progressive pulmonary fibrosis.