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. 2023 Oct;10(1):e001837.
doi: 10.1136/bmjresp-2023-001837.

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

Jessica Mandizha  1 , Joseph W Lanario  1   2 , Anna Duckworth  3 , Sarah Lines  1 , Ana Paiva  1 , Victoria Elworthy  1 , Veena Muraleedharan  1 , Ana Jorge Da Ponte  1 , Rebecca Shuttleworth  1 , Graham Brown  4 , Howard Almond  4 , Carole Bond  4 , Maureen Cosby  1 , Joanne Dallas  5 , Marium Naqvi  5 , Adam David Russell  6 , Alex Berry  7 , Michael Gibbons  1 , Christopher J Scotton  3 , Anne-Marie Russell  8   9
Affiliations

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

Jessica Mandizha et al. BMJ Open Respir Res. 2023 Oct.

Abstract

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.

Keywords: interstitial fibrosis; patient outcome assessment; respiratory function test.

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Conflict of interest statement

Competing interests: JM and JL are supported by NIHR funding to undertake this work. SL received honorarium from Boerhinger Ingelheim; MN received speaker fees from Boehringer-Ingelheim, AstraZeneca and Hoffman La Roche and advisory board payments from Boehringer Ingelheim. MN is co-chair of Interstitial Lung Disease Interdisciplinary Network (unpaid) and chair of the Interstitial Lung Disease Pharmacist Network (paid). JL is in receipt of grants from European Respiratory Society, AstraZeneca and GlaxoSmithKline. AMR received speaker fees from Boehringer-Ingelheim, Hoffman La Roche and the Irish Lung Fibrosis Association. AMR is a National Institute for Health Research (NIHR) Senior Research Leader.

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