SZCZECIN CITIZENS’ KNOWLEDGE ABOUT RARE DISEASES
DOI:
https://doi.org/10.21164/pomjlifesci.41Keywords:
rare diseases, Rare Disease Day, questionnaire studyAbstract
Introduction: The aim of the study was to assess knowledge about rare diseases among citizens of Szczecin (Poland).
Material and methods: The study was performed by questioning 242 adult customers of Turzyn Shopping Centre in Szczecin (149 females and 93 males). The survey was conducted in the shopping mall on 23 February 2013 (control group) and during the celebration of Rare Disease Day and the 12th Polish Nationwide Cystic Fibrosis Week (“Dolina Mukolinków”) on 2 March 2013 (research group). The research tool was a questionnaire devised by the authors and filled out by the writing authors interviewer’s answers.
Results: In the study group more people knew about the existence of Rare Disease Day than in the control group (86.02% vs 57.72%, chi‑square test χ2 > χ2 1; 0.001, p < 0.001), but there was no significant difference between knowledge of when Rare Disease Day is celebrated. The definition of rare diseases compatible with the definition of the European Commission’s Health and Consumer Protection was reported only in the control group by 4 people. Examples of rare diseases were reported by 74.19% of the respondents in the study group and by 65.10% in the control group (more than 130 diseases were mentioned altogether). Usually, respondents mentioned fewer examples than were asked about in the questionnaire. The aim of Rare Disease Day was accurately specified by 86.02% of persons in the study group and 87.92% in the control group. Rare Disease Day personally concerns 30.11% of respondents in the study group and 10.07% of persons in the control group (OR = 3.85, 95% CI 0.9–3.6, χ2 > χ2 1; 0.001, p < 0.001).
Conclusions: The respondents from the research group knew more about Rare Disease Day and defined the idea of it as closed in a significantly higher degree than the control group. There was no significant difference in the detailed knowledge about rare diseases in either group. This might indicate the need to educate society and patients, along with their families.
References
European Comission Health & Consumer Protection Directorate‑General: Useful information on Rare Diseases from an EU perspective. JMO/C5/81.
Dodge J.A., Chigladze T., Donadieu J., Grossman Z., Ramos F., Serlicorni A. et al.: The importance of rare diseases: from the gene to society. Arch Dis Child. 2011, 96 (9), 791–792.
Simerka P.: Council recommendation of 8 June 2009 on an action in the field of rare diseases. Official Journal of the European Union 3.7.2009: C151/7–10.
Skoczylas M., Rudnicki J., Czeszyńska M.B., Konefał H., Kordek A., Łoniewska B. et al.: Teaching of medical students and young doctors in the field of rare diseases. Lietuvos Pediatrijos Kronika. 2011, 3, 24–26.
Kampania „Nadzieja. Mamy ją w genach”. http://www.nadziejawgenach.pl/ (21.03.2014).
Orpha.net. The portal for rare diseases and orphan drugs. www.orpha. net (21.03.2014).
Rare Disease Day. http://www.rarediseaseday.org/ (21.03.2014).
Orpha.net. http://www.orpha.net (21.12.2014).
Świadomość europejska w zakresie rzadkich chorób. http://ec.europa.eu/public_opinion/archives/eb_special_379_360_en.htm (31.03.2014).
Special Eurobarometer 361. European awareness of Rare Diseases. Report. http://ec.europa.eu/public_opinion/archives/eb_special_379_360_ en.htm (31.03.2014).
Nishimura Y., Mimoto F., Ohno K., Terada Y.: Rare Disease Day 2010 in Japan: 1st Japanese Rare Disease Day event. In: 6th International Conference on Rare Diseases and Orphan Drugs. Global Approaches to Research and Patients Access to Diagnosis, Information and Care, And the Common Issues with Neglected Diseases in Developing Countries. Program and Abstract Book. March 18–20, 2010. Buenos Aires – Argentina. Buenos Aires: International Conferences for Rare Diseases and Orphan Drugs. 2010, 59–60. http://icord.se/past‑events/buenos_aires_2010 (21.03.2014).
