BMJ Open Respiratory Research (Dec 2023)

Patient perspectives on home-spirometry in interstitial lung disease: a qualitative co-designed study

  • Sarah Lines,
  • Michael Gibbons,
  • Rebecca Shuttleworth,
  • Anne-Marie Russell,
  • Graham Brown,
  • Anna Duckworth,
  • Alex Berry,
  • Jessica Mandizha,
  • Joseph W Lanario,
  • Ana Paiva,
  • Victoria Elworthy,
  • Veena Muraleedharan,
  • Ana Jorge Da Ponte,
  • Howard Almond,
  • Carole Bond,
  • Maureen Cosby,
  • Joanne Dallas,
  • Marium Naqvi,
  • Adam David Russell,
  • Christopher J Scotton

DOI
https://doi.org/10.1136/bmjresp-2023-001837
Journal volume & issue
Vol. 10, no. 1

Abstract

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Background Opportunities for home-monitoring are increasing exponentially. Home- spirometry is reproducible and reliable in interstitial lung disease (ILD), yet patients’ experiences are not reported. Given the morbidity and mortality associated with ILDs, maintaining health-related quality-of-life is vital. We report our findings from a codesigned, qualitative study capturing the perspectives and experiences of patients using home-spirometry in a UK regional ILD National Health Service England (NHSE) commissioned service.Methods Patients eligible for home-spirometry as routine clinical care, able to give consent and able to access a smart phone were invited to participate. In-depth, semistructured interviews were conducted at serial time points (baseline, 1, 3 and 6 months), recorded, transcribed and analysed thematically.Results We report on the experiences of 10 recruited patients (8 males; median age 66 years, range 50–82 years; 7 diagnosed with idiopathic pulmonary fibrosis, 3 other ILDs) who generally found spirometry convenient and easy to use, but their relationships with forced vital capacity results were complex. Main themes emerging were: (1) anticipated benefits—to identify change, trigger action and aid understanding of condition; (2) needs—clinical oversight and feedback, understanding of results, ownership, need for data and a need ‘to know’; (3) emotional impact—worry, reassurance, ambivalence/conflicting feelings, reminder of health issues, indifference; (4) ease of home-spirometry—simplicity, convenience and (5) difficulties with home-spirometry—technical issues, technique, physical effort.Conclusion Home-spirometry has many benefits, but in view of the potential risks to psychological well-being, must be considered on an individual basis. Informed consent and decision-making are essential and should be ongoing, acknowledging potential limitations as well as benefits. Healthcare support is vital.