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

BACKGROUND: 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. METHODS: 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. RESULTS: 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%). CONCLUSION: 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.

Electronic screening for unmet social needs in a pediatric pulmonary clinic: Acceptability and associations with health outcomes.

BACKGROUND: Children with unmet basic needs experience worse health than more advantaged counterparts. There has been limited research on screening for unmet basic needs in pediatric subspecialty care. METHODS: Caregivers of established patients in pediatric asthma and cystic fibrosis (CF) clinics were screened for unmet basic needs with an electronic survey, which asked about concerns and stress level (5-point Likert scale) related to food, housing, transportation, health insurance, and childcare, among others. Medical record review provided patient demographic characteristics and clinical data. A follow-up survey with the clinical providers assessed the acceptability of electronic screening for unmet needs. RESULTS: The sample included 214 pediatric patients (N = 105 asthma, N = 109 CF) and their caregivers. Most patients with asthma (76%) were Black, 30% in households with <$20,000 annual income. In contrast, most patients with CF (93%) were white, 12% in households with <$20,000 annual income. Reported needs included food insecurity (29% asthma and 17% CF), healthy food (75% asthma and 87% CF), financial insecurity (45% asthma and 32% CF), health insurance (15% asthma and 28% CF), smoke exposure (24% asthma and 28% CF), child's exercise (21% asthma and 28% CF), living conditions (18% asthma and 17% CF), childcare (11% asthma and 15% CF), transportation (16% asthma and 9% CF), and housing insecurity (10% asthma and 8% CF). Concerns were rated moderately to very stressful. Food insecurity, financial insecurity, and smoke exposure were significantly associated with uncontrolled asthma. In people with CF, concerns about health insurance and child exercise were significantly associated with lower lung function and increased odds of hospitalizations. Clinicians believed that screening was important and should be administered by a designated person on the clinical team. CONCLUSIONS: Unmet basic needs and associated stress levels are linked to adverse pediatric pulmonary outcomes. Electronic screening, without face-to-face interaction or paper trail, facilitates high response rates and is easily integrated into clinic flow. Such screenings can identify vulnerable patients for targeted interventions and referral to available community resources.

A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings.

BACKGROUND: Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary care team. The limited exchange of information outside of the quarterly clinic visits impedes optimal disease self-management, patient engagement, and shared decision making. OBJECTIVE: The aim of this study is to adapt a mobile health (mHealth) app originally developed in Sweden to the needs of patients, families, and health care providers in a CF center in the United States and to test it as a platform for sharing patient-generated health data with the CF health care team. METHODS: Focus groups with health care providers of patients with CF, adolescents with CF, and caregivers of children with CF were conducted to determine what modifications were necessary. Focus group data were analyzed using a thematic analysis, and emergent themes were ranked according to desirability and technical feasibility. The mHealth platform was then modified to meet the identified needs and preferences, and the flow of patient-generated health data to a secure Research Electronic Data Capture database was tested. Protocols for data management and clinical follow-up were also developed. RESULTS: A total of 5 focus groups with 21 participants were conducted. Recommended modifications pertained to all functionalities of the mHealth platform, including tracking of symptoms, treatments, and activities of daily care; creating and organizing medication lists and setting up reminders; generating reports for the health care team; language and presentation; sharing and privacy; and settings and accounts. Overall, health care providers recommended changes to align the mHealth platform with US standards of care, people with CF and their caregivers requested more tracking functionalities, and both groups suggested the inclusion of a mental health tracker as well as more detailed response options and precise language. Beta testers of the modified platform reported issues related to translatability to US environment and various bugs. CONCLUSIONS: This study demonstrated the importance of identifying the needs and preferences of target users and stakeholders before adopting existing mHealth solutions. All relevant perspectives, including those of clinicians, patients, and caregivers, should be thoroughly considered to meet both end users' needs and evidence-based practice recommendations.