Patient perspectives on knowledge gaps in hypersensitivity pneumonitis

Abstract

Objectives Responding to prior research findings that lack of knowledge about their disease impacted patients’ quality of life, the objective of this study was to identify and prioritise information gaps about hypersensitivity pneumonitis (HP) from the perspective of patients living with the disease.Design This study used the nominal group technique, a semiquantitative and qualitative method to identify stakeholder priorities.Setting Virtual group sessions were conducted in an academic medical centre in the USA.Participants 21 patients diagnosed with HP participated in this study. Participants were eligible if they spoke English and had access to the internet and were excluded if they had cognitive impairment.Results The patient statements were grouped into seven themes that were prioritised by participants in the following order: (1) natural history and prognosis; (2) current treatment options and therapeutic research; (3) epidemiology and aetiology of HP; (4) living well with HP; (5) origin and management of symptoms; (6) identifying and mitigating exposures and (7) methods of educating patients, clinicians and others about HP.Conclusions This study provides an understanding of patients’ prioritisation of knowledge gaps in HP to inform targeted educational interventions and provide avenues for future research.