Adolescent and caregiver attitudes towards telemedicine use in pediatric nephrology

BACKGROUND: Telemedicine is increasingly utilized as an alternative to in person consultation. Current pandemic conditions are providing additional impetus to virtual care delivery. We compared both adolescent and caregiver (parent or guardian) attitudes towards telemedicine (here as tertiary center to remote health care location) as a crucial determinant of longer-term effectiveness. METHODS: This qualitative research study analyzed transcribed structured telephone interviews with both 11–18 year-old pediatric nephrology patients and their caregivers and performed a quantitative analysis of patient demographics, disease factors and distance to tertiary center vs. telemedicine center. RESULTS: The study was conducted in a medium-sized tertiary pediatric nephrology centre with a large catchment area of over 0.5 million square kilometers and 629,000 children and adolescents under 18 years of age. Eleven dyads of adolescents and caregivers were enrolled. Five adolescents were male. The mean age of the adolescents was 14.4 ± 2.5 years (range 11.2–18.0). The median distance to our tertiary center was 191 km (range 110–1378 km). Four adolescents lived more than 500 km from our tertiary center. The 11 adolescents had a total of 334 in person visits (mean 30 ± 25) and 86 telemedicine visits (mean 8 ± 7). A ratio of 2:1 telemedicine to in-person visits was favored; with caregivers more in favor of remote care than adolescents. Qualitative analysis found that experiences with telemedicine were distinguished by consultation-specific factors and contextual factors. Contextual factors (travel/cost savings) were valued for telemedicine by adolescents and caregivers. Consultation-specific factors, such as the ability to show the doctor physical symptoms, were more valued during in-person consultations, especially by adolescents. The overall visit type preference was related to the nature of the consultation. For regular check-ups, and for adolescents with less complex needs, participants felt that telemedicine offered a comparable experience to in-person visits. Adolescents with more complex conditions preferred in-person visits. CONCLUSIONS: Indiscriminate transfer to chronic care predicated on mainly telemedicine approach is not compatible with user expressed attitudes (especially among adolescents). Accurately mapping models of care to these attitudes is an essential determinant of effective management and longer-term engagement with potentially life-long health challenges. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-021-06506-0.