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CPMS-improving patient care in Europe via virtual case discussions.
Mönig, Isabel; Steenvoorden, Danielle; de Graaf, Johan P; Ahmed, S Faisal; Taruscio, Domenica; Beun, Johan G; Johannsen, Trine H; Juul, Anders; Hiort, Olaf; Pereira, Alberto M.
Afiliação
  • Mönig I; Department of Paediatrics and Adolescent Medicine, Division of Paediatric Endocrinology and Diabetes, University of Lübeck, Lübeck, Germany. isabel.moenig@uksh.de.
  • Steenvoorden D; Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands.
  • de Graaf JP; Dutch Pituitary Foundation, Nijkerk, The Netherlands.
  • Ahmed SF; Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands.
  • Taruscio D; Office for Rare Conditions, University of Glasgow, Glasgow, UK.
  • Beun JG; National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy.
  • Johannsen TH; Dutch Adrenal Patients Society, Nijkerk, The Netherlands.
  • Juul A; BijnierNET/AdrenalNET, Soest, The Netherlands.
  • Hiort O; Department of Growth and Reproduction and International Center for Research and Research Training in Endocrine Disruption of Male Reproduction and Child Health (EDMaRC), Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.
  • Pereira AM; Department of Growth and Reproduction and International Center for Research and Research Training in Endocrine Disruption of Male Reproduction and Child Health (EDMaRC), Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.
Endocrine ; 71(3): 549-554, 2021 03.
Article em En | MEDLINE | ID: mdl-33528763
ABSTRACT

PURPOSE:

The core task of European Reference Networks (ERNs) is to reduce health care inequalities throughout Europe for all patients with rare and complex conditions. A secure web-based application for virtual consultations, the Clinical Patient Management System (CPMS), was developed by the EU to provide expert specialized care for all these patients. This review analyses the opportunities and difficulties that the implementation of this virtual network implies for physicians as well as for the patients.

METHODS:

European Reference Network on Rare Endocrine Conditions (Endo-ERN) installed an Operational Helpdesk (OH) to support their members in using CPMS. The OH initiated several actions to facilitate and increase the usage of CPMS. Satisfaction with the system and reasons for low participation rates in virtual case discussions were analyzed by different surveys.

RESULTS:

The number of CPMS users increased constantly, but the active usage of the system remains insufficient. Main reasons were technical difficulties, lack of time and insufficient awareness about CPMS in experts and patients throughout Europe. Still, outcomes of the virtual discussions are considered useful by involved experts and the discussions have provided topics for educational webinars and research.

CONCLUSIONS:

CPMS is a secure system with many advantages compared to previous ways of consulting experts but also difficulties that need to be overcome with future strategies. By facilitating its use and increasing awareness among all relevant European experts and patients, CPMS can help to make the existing expertise available for all patients with rare (endocrine) conditions throughout Europe as it was intended.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Doenças Raras / Doenças do Sistema Endócrino Limite: Humans País/Região como assunto: Europa Idioma: En Ano de publicação: 2021 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Doenças Raras / Doenças do Sistema Endócrino Limite: Humans País/Região como assunto: Europa Idioma: En Ano de publicação: 2021 Tipo de documento: Article