Journal of Rehabilitation Medicine 51-4inkOmslag

278 S. Tallqvist et al. Table V. Overview of instruments in the Finnish Spinal Cord Injury Study (FinSCI) questionnaire to assess environmental factors ICF code ICF category Instrument Number of questions e110 e115 e120 e135 e150 e155 e310 e320 Products or substances for personal consumption Products and technology for personal use in daily living Products and technology for personal indoor and outdoor mobility and transportation Equipment, products and technology used for employment to facilitate work activities Design, construction and building products and technology of buildings for public use Design, construction and building products and technology of buildings for private use Immediate family Friends NEFI-S SCIM-SR NEFI-S FinSCI research group NEFI-S NEFI-S PROMIS Emotional Support FinSCI research group 1 1 2 1 1 1 2 1 e340 e355 e450 e580 Personal care providers and personal assistants Health professionals Individual attitudes of health professionals Health services, systems and policies PROMIS Emotional Support NEFI-S FinSote FinSCI research group FinSote 3* 1 1 2 3 FinSCI research group 1 SF: short form. The number thereafter indicates the number of questions in a measure, and the letter indicates the version of the SF. *PROMIS Emotional Support questions were linked to ICF category e310 Friends, even though the word “friend” is not used in the questions. The questions use the word “someone” and are originally linked to e3. FinSCI: Finnish Spinal Cord Injury Study; SCIM-SR: Spinal Cord Independence Measure – Self Report; ICF: The International Classification of Functioning, Disability and Health; PROMIS: Patient Reported Outcomes Measurement Information System; Nottwil Environmental Factors Inventory Short Form. Fatigue, Global health, Sleep disturbance, Emotional distress depression, Pain interference and Pain inten- sity. In addition, AIS covers 1 ICF category (Table III). The evaluation of activity and participation will be covered by 64 questions from 1 SCI-specific measure, FinSote, and 7 PROMIS domains (Table IV): Satisfac- tion with Social Roles and Activities, Illness Impact Positive, Physical Function, Self-Efficacy for Managing Symptoms, Satisfaction with Sex Life, Ability to Par- ticipate in Social Roles and Activities and Satisfaction with Participation in Discretionary Social Activities. Environmental factors are measured using 2 SCI- specific measures, FinSote, PROMIS Emotional Sup- port and questions set by the FinSCI Research group, and they are covered by 21 questions (Table V). DISCUSSION The FinSCI study is the first nationwide community survey for the SCI population in Finland. By gathering participants from every SCI outpatient clinic, FinSCI can reach most of Finland’s SCI population in need of special healthcare or services. Furthermore, it can reinforce and complete the survey collection by crea- ting a dialogue between quantitative and qualitative data. This is unique internationally. The need for more patient-reported information has been acknowledged since 2016 when Finland signed the UN Convention on the Rights of Persons with Disabilities (UN-CRPD). We believe that true understanding can be gained only if the people who live with a certain health condition can report issues that are meaningful to them. At pre- sent, the ongoing InSCI survey is gathering data from 28 countries on 5 continents (17). Since FinSCI is using the same SCI-specified instruments as InSCI (SCI- SCS, SCIM-SR, NEFI-S), we have a great opportunity www.medicaljournals.se/jrm to combine and compare our results internationally. In addition, we deepen the data with interviews. The applicability of studying functioning through ICF in people with SCI was already established in the early 2000s (33, 34). ICF has been seen as a compre- hensive framework for describing factors related to health, functioning and environment in people with SCI (34). Previously, the functioning of people with SCI has been examined in only 2 cohort studies. In the Canadian study, the emphasis was on gaining un- derstanding of the service needs of the SCI population (35). In the Swiss study, the ICF has been widely used to study functioning, health maintenance and quality of life (10, 36). The ICF long-term context Brief Core Set for SCI has been seen as the most important factor when describing functioning, health and participation among the SCI population. The rehabilitation Core Set is always recommended when reporting clinical set- tings (7). In the present study, all 4 Core Sets for SCI and the rehabilitation Core Sets are utilized by linking ICF categories to instrument items. The SCI-specific questionnaires are used as such, and by selecting the general questions in a selection process performed by 7 persons with SCI, the study contains the general questions that matter most to the SCI population in Fin- land. Some questions were formulated by the FinSCI research group since the SCI and generic specific questions did not cover all 43 chosen ICF categories. The data and results from FinSCI are also greatly needed at the national level, since Finland has an ongoing reform to establish a regional government for health and social services. The purpose of this reform is to harmonize the state regional administration with the county government administration and to rationalize the organization of public-sector administration at the state, regional and municipal levels. As the primary

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