LAY ABSTRACTThe Finnish Spinal Cord Injury Study (FinSCI) collects information from people with spinal cord injury about their own health, ability to function, and their challenges in terms of accessibility. The study includes a questionnaire 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 questionnaire. Interviews will be performed with 45 persons. Interviews have several different themes, such as returning home, housing and living arrangements, employment situation and pathways to employment. The aim of this study is to help to develop the care and rehabilitation policies for the spinal cord injury population, to plan training models, and to provide information for different parties and gain understanding of the lived experience of people with spinal cord injury. 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 patientreported 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 PatientReported Outcomes Measurement Informa tion System, PROMIS®, and the National Study of Health, Wellbeing 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.

Background Skeletal dysplasias are rare disorders often leading to severe short stature. This study aimed to gain new comprehensive information about functioning and equality in people affected by skeletal dysplasia compared to matched controls without skeletal dysplasia. Methods Functioning was assessed by questionnaire, which was formed by operationalizing International Classification of Functioning, Disability and Health (ICF) core set’s categories into the items according to the ICF linking rules, using primarily Patient Reported Outcomes Measurement Information System PROMIS® - items. Results Altogether 80 subjects with skeletal dysplasia and 55 age-, gender- and place of residence -matched controls participated. People with skeletal dysplasia experienced more pain (p < 0.001) and the pain interfered more their daily lives (p = 0.037) compared to the controls. They had more problems related to musculoskeletal functions and exercise tolerance, difficulties in mobility, used more assistive products and technology and were more affected by climate and seasonal changes (p < 0.001). They met challenges in self-care, acquisition of goods and services and household tasks (p < 0.001) and in participating in close social relationships, leisure time activities (p < 0.001) and associations and organizational services (p = 0.007). They felt less satisfied with remunerative work (p = 0.003), felt more inequality (p = 0.008), met more negative attitudes of others (p < 0.001) and felt having less support given by family and friends (p = 0.022). They used more social and health services and experienced more dissatisfaction with those. Conclusions Our study indicates that skeletal dysplasias restrict functioning extensively and significantly affect daily living. By building accessible environment and improving equal services, functioning could be improved.

Study design A cross-sectional study. Objectives To explore the prevalence of comorbidities, secondary health conditions (SHCs), and multimorbidity in the Finnish population with spinal cord injury (SCI). Setting The data were collected from the Finnish Spinal Cord Injury Study (FinSCI). Participants were identified from three SCI outpatient clinics responsible for the lifelong follow-up of persons with SCI in Finland, (n = 884 participants, response rate; 50%). Methods The FinSCI-questionnaire included a question from the National Study of Health, Well-being, and Service (FinSote) for screening 12 comorbidities. The reference data of the general population for that question were received from the Finnish Institute for Health and Welfare. The Spinal Cord Injury Secondary Condition Scale (SCI-SCS) was used to screen 16 SHCs. The data were analysed with univariate testing and multivariable negative binomial regression modelling. Results The most common comorbidities were high blood pressure/hypertension (38%), back problems (28%), and high cholesterol (22%). The most common SHCs were joint and muscle pain (81%), muscle spasms (74%), chronic pain (71%), and bowel problems (71%). The prevalence of comorbidities was highest among persons aged ≥76 years (mean; 2.0; scale range; 0–12). The prevalence of SHCs was highest in the severity of SCI group C1–4 AIS A, B, and C (mean; 8.9; scale range; 0–16). Conclusions Further research on geriatrics in SCI, non-traumatic SCI, and knowledge of the needs of persons with cervical lesion AIS A, B, or C is required, due to the fact that the prevalence of multimorbidity is high in these groups.

Study design A cross-sectional survey of the Finnish population with spinal cord injury (FinSCI database). Objectives To describe the functional independence of the population with spinal cord injury (SCI) in Finland and to identify how generic and lesion characteristics affect their functional independence. Setting The participants were recruited from the registers of three SCI outpatient clinics responsible for lifelong follow-up and care for people with SCI in Finland. Methods The data were retrieved from FinSCI (n = 1772). The response rate was 50% (n = 884). The Spinal Cord Independence Measure-Self Report (SCIM-SR) was used. The data were analyzed with univariate testing, factor analyses, and multiple linear regression models. Results The median (percentiles 25; 75) SCIM-SR total score was 76.0 (58.8; 89.0), and the score was 18.0 (13.0; 20:0) for the self-care sub-scale, 33.0 (25.0; 39.0) for the respiration and sphincter management sub-scale and 29.0 (16.0; 36.8) for the mobility sub-scale. The higher the neurological level in groups AIS A, B, and C, the lower the functional ability. Group AIS D at any injury level had the highest level of functional ability. Age and the number of years since injury negatively influenced the SCIM-SR scores for every sub-scale. Conclusion Based on the International Spinal Cord Injury Core Data Set, the severity of SCI can differentiate persons with SCI according to their functional ability. The results suggest that SCI affects individuals’ health more than ageing alone does, thereby reducing the functional ability and independence of persons with SCI over time.

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