Family Perspectives on Telemedicine for Pediatric Subspecialty Care

Abstract

Background: Children often have difficulty accessing subspecialty care, and telemedicine may improve access to subspecialty care, but information is lacking on how best to implement telemedicine programs to maximize acceptance and, ultimately, maximize impact for patients and their families.

Methods and materials: To understand how subspecialty telemedicine is perceived and to identify design elements with the potential to improve telemedicine uptake and impact, we conducted and analyzed semi-structured interviews with 21 informants, including parents and caregivers of children with subspecialty care needs and adolescent and young adult patients with subspecialty care needs.

Results: Although informants saw the potential value of using telemedicine to replace in-person subspecialty visits, they were more enthusiastic about using telemedicine to complement rather than replace in-person visits. For example, they described the potential to use telemedicine to facilitate previsit triage encounters to assess whether the patient was being scheduled with the correct subspecialist and with the appropriate level of urgency. They also felt that telemedicine would be useful for communication with subspecialists after scheduled in-person visits for follow-up questions, care coordination, and to discuss changes in health status. Informants felt that it was important for telemedicine programs to have transparent and reliable scheduling, same-day scheduling options, continuity of care with trusted providers, clear guidelines on when to use telemedicine, and preservation of parent choice regarding method of care delivery.

Conclusions: Parents and patients articulated preferences regarding pediatric subspecialty telemedicine in this qualitative, hypothesis-generating study. Understanding and responding to patient and caregiver perceptions and preferences will be crucial to ensure that telemedicine drives true innovation in care delivery rather than simply recapitulating prior models of care.

Keywords: family centered; patient centered; pediatrics; policy; telehealth; telemedicine.