Patient perspectives on knowledge gaps in hypersensitivity pneumonitis

Area of Science:

• Pulmonary Medicine
• Patient-Reported Outcomes
• Health Communication

Background:

• Lack of disease knowledge negatively impacts patients' quality of life.
• Hypersensitivity pneumonitis (HP) is a complex lung disease requiring patient understanding.
• Prior research indicates a need to address patient-identified information gaps.

Purpose of the Study:

• To identify and prioritize information gaps concerning hypersensitivity pneumonitis (HP) from the patient perspective.
• To inform the development of targeted educational interventions for HP patients.
• To guide future research directions based on patient needs.

Main Methods:

• Utilized the nominal group technique, a mixed-methods approach.
• Conducted virtual group sessions with 21 English-speaking patients diagnosed with HP.
• Employed semiquantitative and qualitative data analysis to prioritize stakeholder needs.

Main Results:

• Seven key themes of patient information needs were identified and prioritized.
• Top priorities included natural history, prognosis, and treatment options for HP.
• Other significant areas included symptom management, exposure identification, and patient education strategies.

Conclusions:

• This study elucidates patients' prioritized knowledge gaps in hypersensitivity pneumonitis.
• Findings will inform the creation of effective patient education programs.
• Identified priorities offer clear directions for future HP research and patient support.