Use of telemedicine for ichthyosis: Patient advocacy group as conduit to expert physician advice.

Autor: Asch S; Department of Dermatology, HealthPartners and Park Nicollet Medical Groups, St. Paul, MN, USA., Swink SM; Division of Dermatology, Lehigh Valley Health Network, Allentown, PA, USA., Vivar KL; Department of Dermatology, Northwestern University and Division of Pediatric Dermatology at Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA., Pickford J; Foundation for Ichthyosis and Related Skin Types, Colmar, PA, USA., Breuning L; Foundation for Ichthyosis and Related Skin Types, Colmar, PA, USA., Wassel C; Foundation for Ichthyosis and Related Skin Types, Colmar, PA, USA., Hand JL; Departments of Dermatology, Pediatrics and Clinical Genomics, Mayo Clinic, Rochester, MN, USA., Milstone L; Department of Dermatology, Yale Medical School, New Haven, CT, USA., Castelo-Soccio L; Division of Dermatology, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Jazyk: angličtina
Zdroj: Pediatric dermatology [Pediatr Dermatol] 2021 Jan; Vol. 38 (1), pp. 137-142. Date of Electronic Publication: 2020 Nov 23.
DOI: 10.1111/pde.14460
Abstrakt: 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.
(© 2020 Wiley Periodicals LLC.)
Databáze: MEDLINE
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