Pulmonary rehabilitation for interstitial lung disease: Referral and patient experiences

Objectives: The objectives of this study were to determine the proportion of patients with interstitial lung disease (ILD) referred to pulmonary rehabilitation (PR) and to understand their experiences of participation or non-participation. Methods: Adults (>18 years old) with a diagnosis of ILD were identified from the Alfred Health ILD registry in Melbourne. Information regarding PR referral and attendance were collected from medical records. Semi-structured interviews with open-ended questions were conducted with patients who had been referred to PR. Results: Of 336 patients eligible for inclusion, PR referral was identified in 137 patients (40.7%). Patients referred to PR had worse respiratory function than those not referred (forced vital capacity mean 64 (SD 23) vs 79 (19) % predicted) and more desaturation during a 6-min walk test (86.6 (7.8%) vs 88.5 (7.0%)). Semi-structured interviews identified three major themes: valued components of PR (supervision and individualization, improved confidence with exercise, education and peer support); limited knowledge about PR prior to attendance and barriers to attending PR (lack of perceived benefits, fear of exercise and accessibility). Discussion: Over 40% of patients who attended a specialist ILD clinic were referred to pulmonary rehabilitation, with higher referral rates in those with more severe disease. There are opportunities to improve patient knowledge regarding the role and expected benefits of PR in people with ILD.