| dc.description.abstract | Abstract Background: There is a potential for quality improvement in rehabilitation programs for people with spinal cord injury in Macedonia (Former Yugoslav Republic of Macedonia). We wanted to conduct an epidemiological study of persons with spinal cord injuries as part of an evidence based approach to quality improvement initiatives. Study Objective: The purpose of this master-thesis is to describe the methodological challenges and challenges related to epidemiological data collection in Macedonia (Former Yugoslav Republic of Macedonia), to elaborate on validity, reliability, increase data transparency and possible improvements of future epidemiological data collection studies. I also discuss challenges related to quality improvement of rehabilitation of spinal cord injured persons in this setting. Method: A description and evaluation of methodological challenges in collection of epidemiological data on 78 persons with traumatic spinal cord injury, acutely (n = 41) injured or living with their injury for more than 10 years (n = 37). The discussion is based on data from the following different sources: a) journals, b) clinical examinations c) interviews d) home visits and e) experienced based research notes from data collection and meetings. Results: This study identifies three major challenges in collecting data in this setting: The first major category of challenges encompassed research logistics and procedures, such as recruitment (missing medical documentation and lack of addresses and access to national address-, death- and emigration-registers), travel distances, missing road names and pecuniary compensation. The other major category of challenges was concerned with ethical issues such as recruiting study participants early after a life changing injury and the initial lack of mutual trust and understanding between researchers and participants. The last major category of challenges was concerned with scientific quality and interpretation, including representativeness. Valid and reliable data is of special importance in quality improvement settings in middle-income countries, as various forces of resistance to change are often present. Conclusion: Collecting less structured data from patients can potentially be very productive, but requires the anticipation of various challenges. I here provide illustration and suggestions from the study in an effort to facilitate future epidemiological data collections in Macedonia (Former Yugoslav Republic of Macedonia). Based on my knowledge of the Macedonian (Former Yugoslav Republic of Macedonia) health care services of spinal cord injured persons, study design and methods utilized, I argue that the epidemiological data are valuable and contribute to the knowledge base of acute and long-term spinal cord injury in Macedonia (Former Yugoslav Republic of Macedonia). Our prospective data are reliable and valid, our retrospective data are not generalizable (valid) but are of value as case-reports. Publishing data in international journals is a first important step in establishing a common acceptance of the validity and reliability of the data and exposing an eventual need for change and quality improvement in middle-income countries. | nob |