Activities of Clinical Expertise and Research in a Rare Disease Referral Centre: A Place for Telemedicine beyond the COVID-19 Pandemic?

Author:

Ducrocq Quentin1ORCID,Guédon-Moreau Laurence2,Launay David1345ORCID,Terriou Louis1,Morell-Dubois Sandrine15,Maillard Hélène15,Lefèvre Guillaume346,Sobanski Vincent1345,Lambert Marc14578,Yelnik Cécile14578,Farhat Meryem-Maud15,Garcia Fernandez Maria José910ORCID,Hachulla Eric1345,Sanges Sébastien1345ORCID

Affiliation:

1. CHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France

2. Université de Lille, Faculté de Médecine et CHU de Lille, Clinique de Cardiologie et Maladies Vasculaires, F-59000 Lille, France

3. Univ. Lille, U1286—INFINITE—Institute for Translational Research in Inflammation, F-59000 Lille, France

4. Inserm, F-59000 Lille, France

5. Health Care Provider of the European Reference Network on Rare Connective Tissue and Musculoskeletal Diseases Network (ReCONNET), F-59000 Lille, France

6. CHU Lille, Laboratoire d’Immunologie, F-59000 Lille, France

7. CHU Lille, Département de Médecine Polyvalente Post-Urgences, F-59000 Lille, France

8. Univ. Lille, U1167—RIDAGE—Risk Factors and Molecular Determinants of Aging-Related Diseases, F-59000 Lille, France

9. Unité Matériaux et Transformations (UMET) UMR CNRS 8207, Université Lille 1, F-59655 Villeneuve d’Ascq, France

10. Inserm, CHU Lille, U1008—Controlled Drug Delivery System and Biomaterials, University Lille, F-59000 Lille, France

Abstract

Introduction: Rare disease referral centres are entrusted with missions of clinical expertise and research, two activities that have to contend with numerous obstacles. Providing specialist opinions is time-consuming, uncompensated and limited by difficulties in exchanging medical data. Clinical research is constrained by the need for frequent research protocol visits. Our objective was to determine whether telemedicine (TLM) can overcome these difficulties. Methods: To better characterise the activity of clinical expertise provided by our French centre, each opinion delivered by our team was reported on a standardised form. To investigate our clinical research activity, investigators and patients were asked to complete a questionnaire on the acceptability of research protocol teleconsultations. Results: Regarding clinical expertise, our team delivered 120 opinions per week (representing a total of 21 h), of which 29% were delivered to patients and 69% to medical practitioners. If these were delivered using TLM, it would represent a potential weekly income of EUR 500 (tele-expertise) and EUR 775 (teleconsultations). Regarding the research activity, 70% of investigators considered the frequency of visits to be a limiting factor for patient inclusions; nearly half of the patients surveyed would be in favour of having teleconsultations in place of (40%) or in addition to (56%) in-person visits. Conclusion: Whereas TLM has become widely used as a back-up procedure to in-person consultations during the COVID-19 pandemic, the solutions it provides to the problems encountered in performing expertise and research activities have made it a new conventional follow-up modality for patients with rare diseases.

Publisher

MDPI AG

Subject

Health Information Management,Health Informatics,Health Policy,Leadership and Management

Reference29 articles.

1. European Union Committee of Experts on Rare Diseases (EUCERD) (2014). 2014 Report on the State of the Art of Rare Disease Activities in Europe, European Commission.

2. [Rare diseases, a public health issue];Donnart;Soins Pediatr. Pueric.,2013

3. RaDiCo, the French National Research Program on Rare Disease Cohorts;Amselem;Orphanet J. Rare Dis.,2021

4. The Burden of Rare Diseases;Ferreira;Am. J. Med. Genet. Part A,2019

5. (2020, August 11). Code de La Santé Publique—Article L6316-1; Volume L6316-1. Available online: https://www.legifrance.gouv.fr/codes/article_lc/LEGIARTI000038887059.

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