# Optimising pulmonary rehabilitation for α1-antitrypsin deficiency: a qualitative study of patient and clinician perspectives

## TL;DR

This study explores how to improve pulmonary rehabilitation for people with α1-antitrypsin deficiency by incorporating patient and clinician perspectives into tailored, flexible programs.

## Contribution

The study provides a novel framework for optimizing pulmonary rehabilitation specifically for α1-antitrypsin deficiency through qualitative insights from patients and clinicians.

## Key findings

- Flexible, locally delivered or hybrid PR models are needed for AATD patients.
- Personalized exercise prescriptions and early referrals improve outcomes.
- Emotional and social support, along with technology integration, are critical for success.

## Abstract

α1-antitrypsin deficiency (AATD) is a rare genetic condition that predisposes individuals to early-onset respiratory disease. While pulmonary rehabilitation (PR) improves function and quality of life in COPD, limited evidence exists on its suitability and optimisation for AATD, which presents distinct clinical and psychosocial challenges.

This qualitative study (November 2023–July 2024) explored how PR services can be adapted to better meet the needs of individuals with AATD. Semi-structured interviews were conducted with 14 patients. 10 healthcare professionals participated in the study: eight took part in three online focus groups and two were interviewed individually. Data were analysed using the Framework Method to identify key improvement areas. A critical-to-quality diagram was developed to translate insights into service-level recommendations.

Six key themes emerged: 1) accessibility and customisation, 2) personalised rehabilitation care, 3) integrated diagnosis and referral pathways, 4) emotional and social support, 5) post-rehabilitation support and 6) technology integration. Participants identified the need for flexible, locally delivered or hybrid PR models, tailored exercise prescriptions (e.g., high-intensity interval training), earlier referrals and condition-specific peer and digital support.

Tailored PR models for AATD should address disease-specific needs through flexible delivery formats, personalised approaches to desaturation management and structured referral and follow-up pathways. These findings provide a roadmap for optimising PR in AATD and may inform improvements in rehabilitation for other early-onset or rare respiratory conditions.

Tailored pulmonary rehabilitation for α1-ATD is vital. Flexible, patient-centred programmes including personalised exercise, streamlined referrals and structured follow-up can overcome α1-ATD's unique challenges and improve long–term outcomes.
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