Calitatea vieţii persoanelor diagosticate cu boli rare în România
Keywords:
quality of life, rare disease, people diagnosed with rare diseasesAbstract
This research had as a main objective the exploration of the quality of life of people diagnosed with rare diseases in Romania. The research method used a sociological survey, and the instrument used was a 42 item survey specifically designed for this study. The survey was administered to a number of 645 subjects selected through snowball sampling. The results of the study show that the situation of Romanian patients that suffer from a rare disease is subjectively perceived by them as: (1) quite difficult, if we refer to finantial situation or the support received from the Romanian state; (2) moderate in regard to the satisfaction with medical services, NGOs, living conditions or the emotional and psychological health; and (3) generally good, if we analyze the support given by family or the perceived relationship with the Church or God.
Downloads
References
Cam, Y. L., The voice of 12,000 Patients. Experiences and Expectations of Rare Disease Patients on Diagnosis and Care in Europe. A report based on the EurordisCare2 and EurordisCare3 Surveys. The European Organsation for Rare Diseases (EURORDIS), 2009.
Cella, D., Bonomi, A., The Functional Assessment of Cancer Therapy (FACT) and Functional Assessment of HIV Infection (FAHI) quality of life measurement system, în Spilker B. (Ed.), Quality of Life and Pharmacoeconomics in Clinical Trials, Philadelphia, Lippincott-Raven, 1996.
Cella, D. F., Lloyd, S. R., Wright, B., Cross-Cultural Instrument Equating: Current Research and Future Directions, în “Quality of Life and Pharmacoeconomics in Clinical Trials”, no. 73, 1996, pp. 707–715.
Cobb, C. W., Measurement Tools and the Quality of Life. Redefining Progress. San Francisco: http://www.econ.tuwien.ac.at/hanappi/lehre/pee/measure_qol_Co bb. pdf (Accesat în Octombrie, 2011), 2000.
Debb, S. C., Blitz, D. L., Choi, S. W., Quality of life differences in an African-American and Caucasian sample of chronic illness patients: Assessment of Differential Item Functioning, în “The New School Psychology Bullentin”, no. 6 (1), 2009, pp. 34–44.
Gallagher, R. M., Clinical pain research: Challenges across cancer, cultures, and disciplines, în “Pain Medicine”, no. 2, 2001, pp. 1–2.
Gonzales, V. A., Martelli, M. F., Baker, J. M., Psychological assessment of persons with chronic pain, în “Neuro Rehabilitation”, no. 14, 2000, pp. 69–83.
Haffner, M. E., Adopting orphan drugs: two dozen years of treating rare diseases, în “The New England Journal of Medicine”, no. 354, 2006, pp. 445–447.
Haffner, M. E., Whitley, J., Moses, M., Two decades of orphan product development, în “Nature Reviews Drug Discovery”, no. 1, 2002, pp. 821–825.
Hughes, D. A., Tunnage, B., Yeo, S. T., Drugs for exceptionally rare diseases: do they deserve special status for funding?, în “Quarterly Journal of Medicine”, no. 98, 2005, pp. 829–836.
Innes, J. E., Disappointments and Legacies of Social Indicators, în “Journal of Public Policy”, no. 9, 1990, pp. 429–432.
Kole, A., Faurisson, F., The voice of 12,000 Patients. Experiences and Expectations of Rare Disease Patients on Diagnosis and Care in Europe, A report based on the EurordisCare2 and EurordisCare3 Surveys, The European Organsation for Rare Diseases (EURORDIS), 2009.
Land, K., Social Indicators, în “Annual Review of Sociology”, no. 9, 1983, pp. 1–26.
McEwin, M., Social Indicators and Social Statistics in Australia, în “Statistical Journal of the United Nations”, Economic Commission for Europe, 1995, pp. 309–318.
Park, C. L., Adler, N. E., Coping style as a predictor of health and well-being across the frst year of medical school, în “Health Psychology”, no. 22, 2003, pp. 627–631.
Wästfelt, M., Fadeel, B., Henter, J.-I., A journey of hope: lessons learned from studies on rare diseases and orphan drugs, în “Journal of Internal Medicine”, no. 260, 2006, pp. 1–10.
Wool, M. S., Mor, V., A multidimensional model for understanding cancer pain, în “Cancer Investigation”, no. 23, 2005, pp. 727–734.
Zamfir, C., Introductory Study. Evolution of Quality of Life Research Topics: A Sociological Analysis, în Mărginean I. (Ed.), Quality of Life in Romania, Bucharest, Expert Publishing Group, 2004, pp. 9–24.
Zickler, P., When the body suffers, the mind suffers, în “Monitor on Psychology”, no. 40, 2009, pp. 31–34.
Planul Naţional de Boli Rare din România (2010–2014), disponibil online la http://nestor.orpha.net/EUCERD/upload/file/Docs/ROPlan_ro.pdf (Accesat în Octombrie, 2011).
Published
How to Cite
Issue
Section
Copyright (c) 2012 Romanian Academy Publishing House
This work is licensed under a Creative Commons Attribution 4.0 International License.
