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

• Published in: Journal of cystic fibrosis Vol. 22; no. 5; pp. 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: Journal Article
• Language: English
• Published: Netherlands 01.09.2023
• Subjects: Adolescent; Child; Cystic Fibrosis - therapy; Humans; Patient-Centered Care; Quality of Life; Self-Management; Telemedicine; Patient-generated health data; Satisfaction with care; Mobile health; Patient-centered care; Shared decision-making
• ISSN: 1569-1993; 1873-5010
• DOI: 10.1016/j.jcf.2023.04.009

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<0.001). The use of Genia was associated with nominal improvements in all QOL domains and symptom scales. The platform was feasible, with participants recording more than 4,400 observations (mean 84.2) and submitting 496 weekly reports (mean 13.8) and 70 quarterly reports (mean 1.8), and acceptable (95% retention rate). For participants, the most useful app feature was pre-visit reports (66.7%), and the top symptom trackers were those for cough (23.7%), appetite (21.1%), energy (18.4%), and medicines (18.4%). The use of Genia over 6 months was feasible, acceptable, and associated with improved measures of patient-centered care. Study results support wider use of Genia in clinical settings. Efficacy for clinical outcomes should be assessed in a randomized clinical trial.