What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?

Abstract

Introduction“What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?” was identified as one of the James Lind Alliance Priority Setting Partnership’s top 10 research questions in cystic fibrosis (CF). Using electronic questionnaires, we aimed to gain a deeper understanding of this research priority.MethodThe work was led by the steering group representative of the UK CF community consisting of patients, carers and healthcare professionals (HCPs). Electronic questionnaires were completed over a 4-week period and promoted via online forums such as Twitter, the UK CF Trust and US CF Foundation websites and via professional networks. Analysis of the closed questions was completed using Microsoft Excel, with keyword analysis and the final thematic analysis completed using NVivo software.ResultsThere were 313 respondents; 176/313 (56%) were from people with CF and their families. HCPs comprised of 10 professional groups accounting for 137/313 (44%) of respondents, with global involvement of participants with the majority from the UK. Common themes identified as impacting on adherence included: having no time, treatment burden, competing life demands, fatigue and the patient’s general health. Having a routine was identified as the most frequently used motivational strategy, valued by both the patient and professional community. However, some strategies were valued more by HCPs than used in practice by patients; these included the use of short-term goal setting and technology use.ConclusionAdherence to treatment is crucial, however it is often suboptimal and strategies valued by HCPs to promote adherence are not always shared by patients. To promote adherence clinicians and researchers should be mindful that in a condition where treatment burden and time pressures are considerable, any interventions should focus on simplifying care and reducing treatment burden.

Management of Cystic Fibrosis during COVID-19: Patient Reported Outcomes based remote follow-up among CF patients in Denmark – A feasibility study

“…Nonetheless, they underlined that relationships with and support from HCPs remained important and the PRO solution could not entirely replace in-person meetings. This was also the finding of the other study [16] , which identified patients’ families and CF teams as key support networks.…”

“…Another study by Calthorpe et al. [16] highlighted the need to focus on developing interventions that simplify care and reduce treatment burden. Overall, the participants agreed that the PRO solution supported individualized outpatient care as they experience CF as a dynamic disease that requires a flexible approach to treatment.…”

Telehealth after the pandemic: Will the inverse care law apply? (Commentary)

“…A previous survey, completed prior to the pandemic, demonstrated that technology is being used by a subset of the CF community to aid treatment management. Health professionals tended to be more enthusiastic about the technology than pwCF [11] . Indeed, Solomon et al.…”

“…A previous survey, completed prior to the pandemic, demonstrated that technology is being used by a subset of the CF community to aid treatment management. Health professionals tended to be more enthusiastic about the technology than pwCF [11] . Indeed, Solomon et al also describe a level of uncertainty in the CF community as to whether mainly in person, online or a combination of the two modalities was most appropriate.…”

“…Indeed, Solomon et al also describe a level of uncertainty in the CF community as to whether mainly in person, online or a combination of the two modalities was most appropriate. Telehealth may not be suitable for all pwCF [11] .…”