“An excellent servant but a terrible master”: Understanding the value of wearables for self-management in people with cystic fibrosis and their healthcare providers – A qualitative study

• Published in: International journal of medical informatics (Shannon, Ireland) Ireland), 2024-09, Vol.189, p.105532, Article 105532
• Main Authors: Mattison, Graeme, Canfell, Oliver J., Smith, Daniel, Forrester, Doug, Reid, David, Töyräs, Juha, Dobbins, Chelsea
• Format: Article
• Language: English
• Subjects: Adult; Australia; Cross-Sectional Studies; Cystic fibrosis; Cystic Fibrosis - psychology; Cystic Fibrosis - therapy; Female; Focus Groups; Health care professionals; Health Personnel - psychology; Humans; Male; Medical informatics; Middle Aged; Motivation; Patients; Qualitative Research; Self-Management; Value-based health care; Wearable Electronic Devices; Young Adult
• ISSN: 1386-5056; 1872-8243; 1872-8243
• DOI: 10.1016/j.ijmedinf.2024.105532

•Wearables may improve self-management in cystic fibrosis through remote monitoring, early detection of illness and motivation.•Possession of real-time information through wearables may provide motivation towards positive lifestyle changes, and may assist in detecting early illness.•Recognition of potentially adverse effects of wearables in CF care such as generation of health anxiety.•Shifting away from disease-centric design of applications linked to wearables in favour of a personalised approach to self-management. Wearables hold potential to improve chronic disease self-management in conditions like cystic fibrosis (CF) through remote monitoring, early detection of illness and motivation. Little is known about the acceptability and sustainability of integrating wearables into routine care from the perspectives of people with CF (pwCF) and their treating clinicians. A cross-sectional qualitative study involving semi-structured interviews with adult pwCF and focus groups comprising members of a CF multidisciplinary team (MDT) were conducted at a specialist CF centre in Australia. A phenomenological orientation underpinned the study. Inductive thematic analysis was performed using the Framework method. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Nine pwCF and eight members of a CF MDT, representing six clinical disciplines, participated in the study. Eight themes were inductively generated from the data, of which four were identified from each group. PwCF valued wearables for providing real-time data to motivate healthy behaviours and support shared goal-setting with healthcare providers. Wearables did not influence adherence to CF-specific self-management practices and had some hardware limitations. Members of the CF MDT recognised potential benefits of remote monitoring and shared goal-setting, but advised caution regarding data accuracy, generating patient anxiety in certain personality traits, and lack of evidence supporting use in CF self-management. Perspectives on integrating wearables into CF care were cautiously optimistic, with emerging risks related to patient anxiety and lack of evidence moderating acceptance.