Mobile health platform for self-management of pediatric cystic fibrosis: Impact on patient-centered care outcomes

• Published in: Journal of cystic fibrosis 2023-09, Vol.22 (5), p.823-829
• Main Authors: Oates, Gabriela R., Mims, Cathy, Geurs, Robin, Bergquist, Rikard, Hager, Andreas, Guimbellot, Jennifer S., Hartzes, Anastasia M., Gutierrez, Hector H.
• Format: Article
• Language: English
• Subjects: Adolescent; Child; Cystic Fibrosis - therapy; Humans; Mobile health; Patient-Centered Care; Patient-generated health data; Quality of Life; Satisfaction with care; Self-Management; Shared decision-making; Telemedicine
• ISSN: 1569-1993; 1873-5010
• DOI: 10.1016/j.jcf.2023.04.009

•The use of patient-generated data collected and shared with a CF app was feasible and acceptable in clinical settings.•Use of the CF app was associated with improved measures of patient-centered care, including shared decision-making and satisfaction with care.•Study results support wider use of the CF app (Genia) in clinical settings. Previously, we adapted a mobile health platform (Genia) to the needs of patients and families in a pediatric CF center in the United States. In this feasibility study, we tested the impact of Genia on measures of patient-centered care. In a one-group pre-post study with adolescents with CF and caregivers of children with CF, we tested Genia's effect over 6 months on patient satisfaction with chronic illness care (PACIC) and shared decision-making (CollaboRate). Feasibility and acceptability were assessed with exit interviews and app analytics. The intervention included 40 participants: 30 caregivers of children with CF age ≤14 years and 10 patients with CF age ≥15 years. The use of Genia was associated with increased satisfaction with care (p = 0.024), including delivery system and decision support (p = 0.017), goal setting (p = 0.006), and shared decision-making (p