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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,