Journal of Rehabilitation Medicine 51-4inkOmslag | Page 40

274 S. Tallqvist et al. the International Spinal Cord Injury Community Sur- vey (InSCI) and the Swiss Spinal Cord Injury Cohort Study (SwiSCI), the categories from the ICF long-term Brief Core Set and the rehabilitation Core Set have been seen as a the most suitable approach to identify what to measure (9, 10). In Finland, however, current documentation is focused on biomedical issues, e.g. body structures and functions, while data collection on comprehensive functional ability is still lacking. According to the new Health Care Act and governme- nt decree in 2011, acute care, immediate rehabilitation and life-long multi-professional follow-up, care and re- habilitation of SCI have been centralized at 3 university hospitals in Finland: Oulu (OYS), Tampere (Tays) and Helsinki (HUS) University Hospitals (11). These hos- pitals serve the whole SCI population, both previously and newly injured patients, in their hospital district areas. The main goal of these clinics is to provide specialized care for SCI-related health problems and to counsel and plan rehabilitation according to recently published rehabilitation practice guidelines (12). In Finland, as in the rest of the world, the population is ageing, which is setting new demands for the system (13). A recent Fin- nish study in the OYS and Tays districts shows that the number of SCI incidents is increasing (14). This is due to the ageing population, since degenerative changes in the spine increase the risk of SCI (15). Elderly people are more vulnerable both to traumatic and non-traumatic injuries (16). Thus, the purpose of the Finnish Spinal Cord Injury Study, FinSCI, is to identify factors related to the health and functioning of people with SCI, their challenges with accessibility and how such factors are interconnected in Finland. METHODS FinSCI comprises a quantitative component (the questionnaire) and a qualitative component (the interviews). Thus, it aims to reinforce and complement the data produced by establishing a dialogue among various types of data. Subjects The study subjects were recruited by exploring the patient registers in OYS, Tays and HUS. A more systematic data col- lection of the SCI population started in different outpatient clinics at different times (OYS, January 2012; Tays, May 2011; and HUS, August 2013). The selection of patients for the study was performed at the start of the systematic data collection, and lasted until the end of 2017 at OYS and Tays and until the end of June 2018 at HUS. The inclusion and exclusion criteria for research participants are presented in Table I. Patient registers were explored to collect participant social security numbers and sex. The ASIA impairment scale (AIS) and the neurological level of injury were assessed based on the International Standards for the Neurological Classification of Spinal Cord Injury (ISNSCI) (2). The aetiology and date of the SCI (TSCI or NTSCI) were www.medicaljournals.se/jrm Table I. Inclusion and exclusion criteria Inclusion criteria Older than 16 years of age Traumatic or non-traumatic SCI AIS *A, B, C or D Patient at a SCI outpatient clinic Exclusion criteria Congenital SCI Progressive, new non-traumatic SCI Neurodegenerative disease Multiple sclerosis Amyotrophic lateral sclerosis Guillain-Barré syndrome Living in an institution *The ASIA impairment scale (AIS) consists of an evaluation of motor and sensory scores. The AIS grades SCI by the degree of impairment on a scale of A to E: A: complete; B: motor complete, sensory incomplete; C: motor and sensory incomplete; D: motor and sensory incomplete, muscle grade of key muscle functions below the neurological level of injury >3; E: normal (2). SCI: spinal cord injury. also collected from patient registers. For some patients who were injured before the legislative amendments were enacted, the information was requested from Validia Rehabilitation in Helsinki (previously the Käpylä Rehabilitation Centre), where the patients with most severe SCI in Finland were rehabilitated prior to the legal changes. The study was approved by the HUS Coordinating Ethics Committee (HUS/1776/2017). Questionnaire ICF as a background for the questionnaire. FinSCI utilizes 5 different ICF Core Sets: (i) rehabilitation Core Set (n = 30 cate- gories), (ii) long-term comprehensive core sets for SCI (n = 168), (iii) long-term brief core sets for SCI (n = 33), (iv) post-acute comprehensive Core Set for SCI (n = 162), and (v) post-acute brief core set for SCI (n = 25) (7). The ICF categories included in both Brief Core Sets or in 3 different Core Sets including rehabilitation were chosen to be the most important categories and form the FinSCI data-set. The data-set includes 43 catego- ries to which items from the preselected instruments are linked. Outcome instruments of the questionnaire. As part of the questionnaire, sociodemographic data, such as the living and working situation and other patient characteristics, were col- lected. The level (tetraplegia/paraplegia) and completeness (complete/incomplete) of the SCI will also be asked from the participants themselves. To cover the 43 chosen ICF categories from the different areas of health, functioning and environmental factors, 3 self-reported SCI-specific and 2 generic instruments were preselected (Table II). The selection of SCI-specific measures was based on InSCI, which recommends the use of these measurements (17), which were used as a whole. Generic instruments were chosen to be part of the questionnaire, since they are comparable across the subject groups and recommended by the National Institute for Health and Welfare. All instruments have been translated into Finnish using official translation processes (18), and they are presented in the chapters following Table II. The final questions from the generic instruments were based on a selection process (see the Selection process of generic instruments). Spinal Cord Injury Secondary Condition Scale (SCI-SCS). The SCI-SCS is a self-reported health instrument scale used by SCI patients. Respondents are asked to rate their health over the last 3 months. The questionnaire comprises 16 items in which health conditions are evaluated on a scale of 0 to 3 (0 = not experienced in the last 3 months or is an insignificant problem, 1 = mild or infrequent problem, 2 = moderate or occasional problem,