The need for patient-centred clinical research in idiopathic pulmonary fibrosis

摘要: Patient-centredness is an accepted term and perceived by healthcare professionals to be morally ethically desirable. We are motivated the belief that this approach will improve patient-professional experience of decision-making process health outcomes. acknowledge patients, either as participants or co-investigators, have positive contributions make research. As idiopathic pulmonary fibrosis (IPF) community enters a new era clinical research activity we consider there greater capacity for patient involvement partnership. Patient in can optimised through collaborations design, study conduct, dissemination. There increasing interest using patient- reported outcomes (PROs), such health-related quality life, symptoms measures inform ensure perspectives taken into account. PROs essential component specialist IPF services, monitor care delivery measure benchmark performance. In trials, additionally used define entry criteria, evaluate efficacy intervention, adverse events. suggest much wider scope including patient-centred creative thought developing co-investigator roles. Participation requires highly refined processes, particularly condition IPF, which has often unpredictable trajectory. The landscape changed design conduct trials some radical rethinking. It involving patients role co-investigators impact questions ask result designs patient-centred. been hindered lack availability validated, disease-specific questionnaires. A conservative appears inclusion generic symptom life PRO endpoints. Thus, drugs on demonstrates only minimal benefit. time refocus with regards role, development, participants.