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Use of telemedicine for ichthyosis: Patient advocacy group as conduit to expert physician advice
Author(s) -
Asch Sarah,
Swink Shane M.,
Vivar Karina L.,
Pickford Jean,
Breuning Lisa,
Wassel Christine,
Hand Jennifer L.,
Milstone Leonard,
CasteloSoccio Leslie
Publication year - 2020
Publication title -
pediatric dermatology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.542
H-Index - 73
eISSN - 1525-1470
pISSN - 0736-8046
DOI - 10.1111/pde.14460
Subject(s) - medicine , telemedicine , demographics , service (business) , family medicine , ichthyosis , service delivery framework , health care , dermatology , demography , economy , sociology , economics , economic growth
Background/Objectives Patients with rare diseases are challenged when it comes to finding physicians with expertise in their condition. The Foundation for Ichthyosis and Related Skin Types (FIRST) Tele‐Ichthyosis program has provided telemedicine for patients and their families with keratinizing disorders since 2009. This study aims to characterize a decade of experience with the program. Methods This retrospective cohort study analyzed cases for demographics of patients and the clinicians who submitted their cases, nature of questions asked, number of expert responses, and characteristics of responses. Surveys were sent electronically to all users of the FIRST Tele‐Ichthyosis service to assess experiences with the service and solicit constructive recommendations. Descriptive statistics were performed on the case review and responder surveys. Results Eighty‐eight geographically diverse cases were reviewed showing increased use over time by various specialists for patients of all ages. Sixty‐six percent of cases were definitively ichthyosis, and most submitters queried on diagnosis (47%) or treatment (72%). Most submitters described the service as easy to use (66.6%) and advice as timely (61.1%), clear (66.6%), and beneficial (61.1%). All submitters made suggestions for improvement (100%). Experts predominately worked with pediatric populations (70%) and reported self‐motivation to volunteer and improve patients’ lives (100%). Experts found technological barriers minor and provided feedback to enhance the service. Conclusions This report highlights how a rare‐disease patient advocacy group successfully supports physician collaboration and patient outcomes through secure and efficient telemedicine. Lessons learned are highly relevant in the current healthcare environment.