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J Rehabil Med 2019; 51: 273–280 ORIGINAL REPORT HEALTH, FUNCTIONING AND ACCESSIBILITY AMONG SPINAL CORD INJURY POPULATION IN FINLAND: PROTOCOL FOR THE FINSCI STUDY Susanna TALLQVIST, PT, MSc 1,2 , Heidi ANTTILA, PT, PhD 3 , Mauri KALLINEN, MD, PhD 4,5 , Eerika KOSKINEN, MD, PhD 6 , Harri HÄMÄLÄINEN, MD, PhD 7 , Anna-Maija KAUPPILA, MD, PhD 8 , Anni TÄCKMAN, BBA 9 , Aki VAINIONPÄÄ, MD, PhD 10 , Jari AROKOSKI, MD, PhD 7 and Sinikka HIEKKALA, PT, PhD 2,11 From the 1 University of Helsinki, Faculty of Medicine, 2 The Finnish Association of People with Physical Disabilities, Helsinki, 3 The National Institute for Health and Welfare, Welfare Department, Ageing, Disability and Functioning Unit, 4 Central Finland Central Hospital, Rehabilitation Department, Jyväskylä, 5 Center for Life Course Epidemiology Research, University of Oulu, Oulu, 6 Tampere University Hospital, Department of Neurosciences and Rehabilitation, Tampere, 7 Helsinki University Hospital, Department of Internal Medicine and Rehabilitation/Spinal Cord Injury Outpatient Clinic, Helsinki, 8 Oulu University Hospital, Department of Medical Rehabilitation/Spinal Cord Injury Outpatient Clinic, Oulu, 9 The Finnish Association of Spinal Cord Injured Akson, Helsinki, 10 Seinäjoki Central Hospital, Department of Rehabilitation, Seinäjoki and 11 Validia Rehabilitation, Helsinki, Finland Background and purpose: The purpose of the Finnish Spinal Cord Injury Study (FinSCI) is to identify fac- tors related to the health and functioning of people with spinal cord injury, their challenges with acces- sibility, and how such factors are interconnected. The International Classification of Functioning, Disa- bility and Health (ICF) is used as a structured frame­ work in the study. Design: Protocol of mixed methods study. Results: Study participants were recruited from all 3 spinal cord injury outpatient clinics in Finland. The final target group consists of 1,789 subjects with spinal cord injury. The final questionnaire was for- med from 5 different patient-reported instruments. The spinal cord injury-specified instruments are the Spinal Cord Injury Secondary Condition Scale, the Spinal Cord Independence Measure, and the Nottwil Environmental Factors Inventory Short Form. In ad- dition, questions from the following generic instru- ments were chosen after a selection process: the Patient-Reported Outcomes Measurement Informa- tion System, PROMIS®, and the National Study of Health, Well-being and Service, FinSote. Altogether, the final questionnaire covers 64 ICF categories and consists of 151 ICF-linked questions. Conclusion: The formulated questionnaire covers widely different aspects of health, functioning and accessibility. The questionnaire results and subse- quent interviews will help in developing care and rehabilitation policies and services for people with spinal cord injury. Key words: spinal cord injury; International Classification of Functioning Disability and Health; data collection; questionn- aire design; community survey; methodology. Accepted Feb 6, 2019; Epub ahead of print Feb 25, 2019 J Rehabil Med 2019; 51: 273–280 Correspondence address: Susanna Tallqvist, Faculty of Medicine, Uni- versity of Helsinki, FI-00014 Helsinki, Finland. E-mail: susannatall- [email protected] S pinal cord injury (SCI) can be traumatic (TSCI), re- sulting from an accident or injury, or non-traumatic (NTSCI), resulting from a congenital disorder, disease LAY ABSTRACT The Finnish Spinal Cord Injury Study (FinSCI) collects information from people with spinal cord injury about their own health, ability to function, and their challen- ges in terms of accessibility. The study includes a ques- tionnaire and interviews. The questionnaire is based on international guidelines. Participants are recruited from the registers of Oulu, Tampere and Helsinki university hospitals. Almost 1,800 people met the criteria and it is hoped that at least half of them will answer the ques- tionnaire. Interviews will be performed with 45 persons. Interviews have several different themes, such as retur- ning home, housing and living arrangements, employ- ment situation and pathways to employment. The aim of this study is to help to develop the care and reha- bilitation policies for the spinal cord injury population, to plan training models, and to provide information for different parties and gain understanding of the lived ex- perience of people with spinal cord injury. or degenerative condition (1). The level and comple- teness of injury determine the remaining sensory and motor functions (2). Damage to the autonomic nervous system leads to dysfunction in several other organs, such as the urinary bladder, bowel and sexual organs (3), as well as in the respiratory tract, blood vessels and sweat glands (4). Due to the multifaceted nature of their injury, people with SCI are significant consumers of rehabilitation and healthcare services (5). Despite experiencing limitations in functioning, people with SCI pursue ordinary lives that encompass a home, family, functioning in various domains, employment and their own well-being and quality of life (6). Health and functioning play a major role in enabling people with SCI to participate in daily activities, social events and society in general (6). In the International Classification of Functioning, Disability and Health (ICF) limitations in human functioning are viewed as a mismatch between an individual’s health and the con- crete requirements of his or her life situation (7). ICF includes over 1,600 categories with Core Sets to help focus on the most important factors of certain health statuses, such as SCI (8). In the latest studies of SCI, This is an open access article under the CC BY-NC license. www.medicaljournals.se/jrm Journal Compilation © 2019 Foundation of Rehabilitation Information. ISSN 1650-1977 doi: 10.2340/16501977-2539