<- Home <- Arhive <- Vol. 28, Issue 4, December 2020



Rom J Leg Med28(4)458-464(2020)
DOI:10.4323/rjlm.2020.458
© Romanian Society of Legal Medicine


PERSPECTIVES ON THE IMPACT OF ROMANIAN PATIENT ORGANIZATIONS IN RARE ENDOCRINE DISEASES

T. C. Blidaru, D. L. Păun, A. C. Sîrbu, N. I. Dima, C. Poiană,


Abstract: Introduction. Rare diseases (RDs) are pathologies that affect a small number of people compared to the general population. In the literature we discover a general approach on rare diseases (RDs), most studies observing a single pathology or the whole spectrum. The current study follows a specialty-based approach of endocrine RDs. This study evaluates the ways in which patients and doctors relate to patient organizations (POs), including education and involvement in research activities. Methods. A questionnaire was applied between May 20th and June 30th 2020 to 66 endocrinologists and to 32 patients with a rare endocrine disease. Results. RDs cause significant burdens for patients and their families, especially from a mental health perspective. The most significant activities of POs for patients are provision of medical education, legal counsel, advocacy and policy-making, whilst doctors consider mental health support as the main role. While a majority of patients collaborate with organizations, only 11% of Romanian endocrinologists do so, the main cause being the insufficient knowledge about these structures. Patient involvement is considered by both groups to be needed in RDs research, but 69% of patients were never part of a research study due to lack of information. Conclusions. POs play a key role in the management of RDs and more physicians should be involved in their activities. Studies on larger groups should be conducted prior to coherent policy-making in this field.
Keywords: rare diseases, orphan diseases, patient, healthcare professional, research, case management, endocrine system diseases, patient organizations, integrative medicine, medical education.



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