Why is it so difficult for GPs to effectively manage patients with rare skin diseases?
Adolescent
Adult
Aged
Aged, 80 and over
Attitude of Health Personnel
Child
Child, Preschool
Clinical Competence
/ standards
Female
France
/ epidemiology
General Practice
/ education
General Practitioners
/ standards
Health Knowledge, Attitudes, Practice
Humans
Infant
Infant, Newborn
Male
Middle Aged
Practice Patterns, Physicians'
/ standards
Rare Diseases
/ epidemiology
Skin Diseases
/ epidemiology
Surveys and Questionnaires
Young Adult
Journal
Presse medicale (Paris, France : 1983)
ISSN: 2213-0276
Titre abrégé: Presse Med
Pays: France
ID NLM: 8302490
Informations de publication
Date de publication:
Dec 2019
Dec 2019
Historique:
received:
01
01
2019
revised:
11
08
2019
accepted:
21
09
2019
pubmed:
24
11
2019
medline:
26
12
2019
entrez:
24
11
2019
Statut:
ppublish
Résumé
Rare diseases are defined by a prevalence of less than one out of 2000 persons. In clinical practice, their management is difficult, due to their diversity, their complexity and a lack of adapted physician training. The aims of this study were to identify rare skin diseases in a reference center, to describe the difficulties encountered by general practitioners (GPs) in management of these uncommon cases, and to pinpoint the characteristics of the GPs having the most problems. A survey conducted from March to June 2017 involving GPs at least one of whose rare skin disease patients was being monitored in a reference center. All in all, 96/195 (49.2%) of the GPs contacted completed the questionnaire, and virtually all of them (95%) reported five main categories of difficulties: giving a diagnosis, monitoring treatment, coordinating care, providing support, and ensuring management of intercurrent pathologies. The most widely reported difficulties were related to diagnosis (88.5%) and care coordination (76%). The GPs most in need of assistance were those practicing in rural areas (11 times more likely to experience difficulties), those with over 10 years of experience (up to 9.8 times more risk) and those not considering their role in the management of patients with rare diseases as instrumental (2.28 times more risk). This study brought to light the difficulties encountered by GPs in management of patients with rare skin diseases. We identified those the most in need of assistance, who are to be targeted for actions aimed at improving the care and treatment of patients suffering from rare skin diseases.
Sections du résumé
BACKGROUND
BACKGROUND
Rare diseases are defined by a prevalence of less than one out of 2000 persons. In clinical practice, their management is difficult, due to their diversity, their complexity and a lack of adapted physician training.
OBJECTIVE
OBJECTIVE
The aims of this study were to identify rare skin diseases in a reference center, to describe the difficulties encountered by general practitioners (GPs) in management of these uncommon cases, and to pinpoint the characteristics of the GPs having the most problems.
METHODS
METHODS
A survey conducted from March to June 2017 involving GPs at least one of whose rare skin disease patients was being monitored in a reference center.
RESULTS
RESULTS
All in all, 96/195 (49.2%) of the GPs contacted completed the questionnaire, and virtually all of them (95%) reported five main categories of difficulties: giving a diagnosis, monitoring treatment, coordinating care, providing support, and ensuring management of intercurrent pathologies. The most widely reported difficulties were related to diagnosis (88.5%) and care coordination (76%). The GPs most in need of assistance were those practicing in rural areas (11 times more likely to experience difficulties), those with over 10 years of experience (up to 9.8 times more risk) and those not considering their role in the management of patients with rare diseases as instrumental (2.28 times more risk).
CONCLUSIONS
CONCLUSIONS
This study brought to light the difficulties encountered by GPs in management of patients with rare skin diseases. We identified those the most in need of assistance, who are to be targeted for actions aimed at improving the care and treatment of patients suffering from rare skin diseases.
Identifiants
pubmed: 31757737
pii: S0755-4982(19)30490-7
doi: 10.1016/j.lpm.2019.09.061
pii:
doi:
Types de publication
Journal Article
Observational Study
Langues
eng
Sous-ensembles de citation
IM
Pagination
e382-e388Informations de copyright
Copyright © 2019 Elsevier Masson SAS. All rights reserved.