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‘It’s difficult, it’s life changing what happens to you’ patient perspective on life with chronic hypersensitivity pneumonitis: a qualitative study
  1. Kerri I Aronson1,
  2. Bradley J Hayward1,
  3. Laura Robbins2,
  4. Robert J Kaner1,3,
  5. Fernando J Martinez1 and
  6. Monika M Safford1
  1. 1 Medicine, Weill Cornell Medical College, New York, New York, USA
  2. 2 Education Institute and Global Affairs, Hospital for Special Surgery, New York, New York, USA
  3. 3 Institute of Genetic Medicine, Weill Cornell Medical College, New York, New York, USA
  1. Correspondence to Dr Kerri I Aronson; kia9010{at}med.cornell.edu

Abstract

Rationale Chronic hypersensitivity pneumonitis (CHP) is a distinct form of interstitial lung disease caused by an inhaled environmental antigen. Some patients with CHP develop progressive pulmonary fibrosis and varying degrees of symptom severity, with heterogeneous impact on functioning and overall well-being. There are no universally accepted diagnostic criteria, few FDA-approved (Food and Drug Administration) therapies and no standardised approach to identifying an antigen. The impact that living with CHP has on patients’ quality of life is understudied, preventing the identification of patient-centred research questions and endpoints for future CHP clinical trials.

Objectives We explored patients’ experiences, perceptions and expectations of living with CHP.

Methods We conducted semistructured interviews with patients with CHP. Patients were recruited using a purposive heterogeneous sampling strategy. Interviews were audio recorded and transcribed verbatim. Data were analysed using the grounded theory method.

Results Eighteen patients were interviewed. Six major themes emerged from the interviews: (1) suffering due to lack of knowledge and uncertainty, (2) hypervigilance, (3) psychosocial, (4) physical impacts, (5) interpersonal and (6) self-perception and identity. The need to identify and avoid an antigen played a prominent role across the themes and subthemes.

Conclusions We identified several key influences on quality of life in patients with CHP that have not been adequately explored. The prevalence of these influences should be quantified, and they should be included in quality of life assessment and should guide the development of targeted interventions to improve quality of life in this patient population.

  • allergic alveolitis
  • interstitial fibrosis

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Footnotes

  • Contributors Conception and design: KIA, BJH, LR, RJK, FJM and MMS. Data collection: KIA and BJH. Data Analysis and interpretation: KIA, BJH, LR and MMS. Drafting of the manuscript: KIA. Revising the manuscript critically for important intellectual content: KIA, BJH, LR, RJK, FJM and MMS. Final approval of the version to be published: KIA, BJH, LR, RJK, FJM and MMS.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The Weill Cornell Medical College Institutional Review Board approved the study protocol.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon reasonable request.

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