Title :

Exploring patient education unmet needs for rare and complex connective tissue and musculoskeletal diseases: a survey of health care providers'' and patients'' expectations in europe

Author(s) :

Farhat, Meryem-Maud [Auteur]
Centre Hospitalier Régional Universitaire [CHU Lille] [CHRU Lille]
Cornet, Alain [Auteur]
Frank, Charissa [Auteur]
Galetti, Ilaria [Auteur]
Grunert, Jürgen [Auteur]
Guimaraes, Vera [Auteur]
Vieira, Ana [Auteur]
Hachulla, Eric [Auteur]
Centre Hospitalier Régional Universitaire [CHU Lille] [CHRU Lille]
Institute for Translational Research in Inflammation - U 1286 [INFINITE]

Journal title :

Chronic Illness

Abbreviated title :

Chronic Illn

Pages :

1742395320968618

Publication date :

2020-10-22

ISSN :

1745-9206

Keyword(s) :

questionnaire
Patient education
unmet needs
Europe

HAL domain(s) :

Sciences du Vivant [q-bio]

English abstract : [en]

OBJECTIVE: The European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases involves health care providers (HCPs) from 8 European countries and 7 patients' representatives of European Patient ...
Show more >OBJECTIVE: The European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases involves health care providers (HCPs) from 8 European countries and 7 patients' representatives of European Patient Advocacy Groups. The objective was to evaluate current practice and unmet needs for patient education (PE) in Europe. METHODS: A questionnaire was sent to HCP members asking about the PE practices and another, to enquire about their needs, was sent to patients' associations in the different countries. RESULTS: The questionnaire was completed by 33 HCPs. Half had no specific staff members dedicated to PE. For HCPs with dedicated staff, 83.3% (n = 11) considered that care providers were insufficient to meet patients' needs. Most of HCPs would like to see the practice of PE standardized. Sixty eight percent (n = 1093) of patients suffering from connective tissue diseases completed the questionnaire had never heard about PE. Most of them were interested in taking part in a PE program. CONCLUSIONS: Our survey revealed a strong interest in PE among patients and HCP and heterogeneity of practice. PE appeared important for both HCPs and patients. An online course for medical students in Europe will be developed in partnership with EULAR to respond to these unmet needs.Show less >

Language :

Anglais

Audience :

Internationale

Popular science :

Non

Administrative institution(s) :

CHU Lille
Inserm
Université de Lille

Collections :

• Institut de Recherche Translationnelle sur l'Inflammation (INFINITE) - U1286

Submission date :

2021-07-06T12:48:24Z
2024-03-29T10:58:18Z