Health, functioning and accessibility among spinal cord injury population in Finland: Protocol for the FinSCI study
Susanna Tallqvist, Heidi Anttila, Mauri Kallinen, Eerika Koskinen, Harri Hämäläinen, Anna-Maija Kauppila, Anni Täckman, Aki Vainionpää, Jari Arokoski, Sinikka Hiekkala
Faculty of Medicine, University of Helsinki, 00014 Helsinki, Finland. E-mail: email@example.com
Background and purpose: The purpose of the Finnish Spinal Cord Injury Study (FinSCI) is to identify factors related to the health and functioning of people with spinal cord injury, their challenges with accessibility, and how such factors are interconnected. The International Classification of Functioning, Disability and Health (ICF) is used as a structured framework in the study.
Design: Protocol of mixed methods study.
Results: Study participants were recruited from all 3 SCI outpatient clinics in Finland. The final target group consists of 1,789 subjects with spinal cord injury. The final questionnaire was formed 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 addition, questions from the following generic instruments were chosen after a selection process: the Patient-Reported Outcomes Measurement Information 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 subsequent interviews will help in developing care and rehabilitation policies and services for people with spinal cord injury.
The 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.
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