Co-designing a mHealth Application for Self-management of Cystic Fibrosis

BACKGROUND Adherence to nebulizer treatments in adults with cystic fibrosis (CF) is often low. A new complex intervention to help adults with CF increase their adherence to nebulizer treatments was tested in a pilot randomized controlled trial (RCT) in 2 UK CF centers. Patients used a nebulizer with electronic monitoring capabilities that transferred data automatically to a digital platform (CFHealthHub) to monitor adherence over time and to a tailored website to display graphs of adherence data and educational and problem-solving information about adherence. A trained interventionist helped patients identify ways to increase their adherence. OBJECTIVE This study aims to explore the mechanisms of action underpinning the intervention. METHODS A qualitative interview study was conducted concurrently with a pilot RCT. In total, 25 semistructured interviews were conducted with 3 interventionists at 2 time points, 14 patients in the intervention arm of the trial, and 5 members of the multidisciplinary teams offering wider care to patients. A framework approach was used for the analysis. RESULTS The intervention was informed by a theoretical framework of behavior change. There was evidence of the expected behavior change mechanisms of action. There was also evidence of additional mechanisms of action associated with effective telehealth interventions for self-management support: relationships, visibility, and fit. Patients described how building a relationship with the interventionist through face-to-face visits with someone who cared about them and their progress helped them to consider ways of increasing adherence to medication. Rather than seeing the visibility of adherence data to clinicians as problematic, patients found this motivating, particularly if they received praise about progress made. The intervention was tailored to individuals, but there were challenges in how the intervention fitted into some patients’ busy lives when delivered through a desktop computer. CONCLUSIONS The mechanisms of action associated with effective telehealth interventions for self-management operated within this new intervention. The intervention was modified to strengthen mechanisms of action based on these findings, for example, delivery through an app accessed via mobile phones and then tested in an RCT in 19 UK CF centers. CLINICALTRIAL International Standard Randomized Controlled Trial Number 13076797; http://www.isrctn.com/ISRCTN13076797

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Self-management for non-cystic fibrosis bronchiectasis

Cochrane Database of Systematic Reviews ◽

10.1002/14651858.cd012528 ◽

2017 ◽

Cited By ~ 2

Author(s):

Carol Kelly ◽

Sally Spencer ◽

Seamus Grundy ◽

Dave Lynes ◽

David JW Evans

Keyword(s):

Cystic Fibrosis ◽

Self Management

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Using digital technology for home monitoring, adherence and self-management in cystic fibrosis: a state-of-the-art review

Thorax ◽

10.1136/thoraxjnl-2019-213233 ◽

2019 ◽

Vol 75 (1) ◽

pp. 72-77 ◽

Cited By ~ 5

Author(s):

Rebecca Jane Calthorpe ◽

Sherie Smith ◽

Katie Gathercole ◽

Alan Robert Smyth

Keyword(s):

Cystic Fibrosis ◽

Digital Technology ◽

State Of The Art ◽

Digital Health ◽

Home Monitoring ◽

Global Strategy ◽

Healthcare Sector ◽

Self Management ◽

Comprehensive Overview ◽

Treatment Regimens

Digital healthcare is a rapidly growing healthcare sector. Its importance has been recognised at both national and international level, with the WHO recently publishing its first global strategy for digital health. The use of digital technology within cystic fibrosis (CF) has also increased. CF is a chronic, life-limiting condition, in which the treatment burden is high and treatment regimens are not static. Digital technologies present an opportunity to support the lives of people with CF. We included 59 articles and protocols in this state-of-the-art review, relating to 48 studies from 1999 until 2019. This provides a comprehensive overview of the expansion and evolution of the use of digital technology. Technology has been used with the aim of increasing accessibility to healthcare, earlier detection of pulmonary exacerbations and objective electronic adherence monitoring. It may also be used to promote adherence and self-management through education, treatment management Apps and social media.

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Developing agency in the transition to self-management of cystic fibrosis in young people

Journal of Adolescence ◽

10.1016/j.adolescence.2019.07.006 ◽

2019 ◽

Vol 75 ◽

pp. 130-137 ◽

Cited By ~ 1

Author(s):

Jennifer Cronly ◽

Eileen Savage

Keyword(s):

Cystic Fibrosis ◽

Young People ◽

Self Management

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Self-Management of Cystic Fibrosis: Short-Term Outcomes of the Cystic Fibrosis Family Education Program

Health Education & Behavior ◽

10.1177/109019819702400511 ◽

1997 ◽

Vol 24 (5) ◽

pp. 652-666 ◽

Cited By ~ 40

Author(s):

L. Kay Bartholomew ◽

Danita I. Czyzewski ◽

Guy S. Parcel ◽

Paul R. Swank ◽

Marianna M. Sockrider ◽

...

Keyword(s):

Cystic Fibrosis ◽

Middle Childhood ◽

Education Program ◽

Self Efficacy ◽

Child Behavior Checklist ◽

Cognitive Theory ◽

Outcome Expectations ◽

Management Program ◽

Family Education ◽

Self Management

This study tested the efficacy of the Cystic Fibrosis Family Education Program, a cystic fibrosis self-management program, on improving participants' knowledge, self-efficacy, self-management behavior, health, and quality of life. A quasi-experimental pretest-posttest nonequivalent comparison group design was employed. Participants made up 104 patient-primary caregiver dyads from the intervention site cystic fibrosis center and 95 from the usual care comparison center. The intervention, a self-paced print curriculum based on social cognitive theory, targeted behavioral capability, self-efficacy, and outcome expectations and was implemented as an integral part of medical care. Parents, early childhood, middle childhood, and adolescents received separate materials on respiratory, nutrition and malabsorption, communication, and coping issues. Significant intervention effects were found on the knowledge scores for caregivers, adolescents, and children; caregiver and adolescent total self-management scores; Child Behavior Checklist total score; one parent coping scale score; the modified NIH score; NIH pulmonary factor 1; and the Brasfield total score. Significant interaction effects were evident in the self-efficacy scores for caregivers and children.

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