Study about life quality of patients with rare diseases in Romania

Within the project „Norvegian-Romanian Partnership for progress in the rare diseases” the Romanian Prader Willi Association with the support of the researchers Șerban Olah (Oradea University), Ioan Popoviciu (Emanuel University in Oradea), Salomea Popoviciu (Emanuel University in Oradea) and Delia Bîrle (Oradea University) have performed a study about life quality of patients with rare diseases in Romania

The sociological research to which we make reference took place in 2010-2011 and it was performed by using the questionnaire based investigation. The questionnaire was applied on 645 subjects selected by an non probabilistic sampling technique, snow-ball-sample type.

The results of the study show that the situation of the Romanian patients suffering of rare diseases is perceived by these ones as being: (1) a pretty difficult one if we make reference to the financial situation or to the support from the Romanian state; (2) medium if we make a link with the satisfaction degree concerning the medical services, NGO’s involvement, living conditions or the emotional and psychological health; and (3) good enough if we analyse the support given by the family or the relationship with the church and God.

The research report was accepted for being published by the Life Quality Magazine, and in March 2012 the authors have published another article based on the data obtained during this research. This article appeared in March 2012 in the Research and Social Intervention Magazine, with the title „The role of religious beliefs and spirituality on the quality of life of rare diseases patients”.

Dorica Dan, RPWA President