Journal of Rehabilitation Medicine 51-4inkOmslag | Page 41

Health and functioning in the SCI population in Finland: FINSCI study
Table II. Outcome instruments used for the questionnaire in the
Finnish Spinal Cord Injury Study
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several areas. The study enables the monitoring of changes in
the well-being and health of different population groups and
regions, and it produces follow-up and evaluation data. The
FinSote survey produces important information required for the
management of the changes in health and social service (23).
The answers are given mainly in 4- or 5-level Likert scales,
measuring time, opinion or quantity.
Self-reported forms Aim of the instrument Spinal Cord Injury Secondary Condition Scale,
SCI-SCS (19)
The Spinal Cord Independence Measure,
SCIM-SR (20)
Nottwil Environmental Factors Inventory Short
Form, NEFI-S (21) SCI-specific health condition Patient-Reported Outcomes Measurement
Information System, PROMIS (22) Generic functioning Selection process of generic instruments
The National study of health, Well-being and
Service, FinSote (23) Generic health, well-being
and services First, the research group selected the preliminary PROMIS® and
FinSote measures according to how they were linked to the ICF.
The PROMIS® questions consisted of Physical Function (120
questions) and Emotional Support (16 questions) item banks,
Satisfaction with Sex Life domain (5 questions) and 10 short
forms (SF) of the item banks; Fatigue SF8a, Sleep Disturbance
SF8a, Depression SF8b, Pain Interference SF6b, Pain Intensity
SF3a, Satisfaction with Social Roles and Activities SF8, Self-
Efficacy for Managing Symptoms 8a, Ability to Participate in
Social Roles and Activities SF8a, Satisfaction with Participa-
tion in Discretionary Social Activities SF7a and Psychosocial
Illness Impact Positive (customized SF of 8 questions). The
number after each short form indicates the number of questions
in each instrument. The 8 FinSote questions consisted of social
affairs and health. In addition, the research group formulated 7
questions. Finally, the PROMIS Global Health (10 questions)
was taken as a whole without evaluation.
Thereafter, the generic instruments were evaluated by 7 sub-
jects with SCI. The aim was to select the most relevant items for
the SCI population as well as to maintain a reasonable level of
burden for the patients, a consequence of completing multiple
questions. Participants were asked to evaluate the relevance of
the preselected PROMIS ® and FinSote items, as well as the ques-
tions made by the FinSCI research group. A Webropol survey
tool was used for this evaluation. Participants announced their
willingness to evaluate questions voluntarily and rated ques-
tions privately to avoid changes in opinions during evaluation.
Altogether, 220 questions were evaluated. Participants scored
each question on a scale of 1–4 (1 = not relevant, 2 = somewhat
relevant, 3 = very relevant, 4 = highly relevant). This content va-
lidity indexing (CVI) technique produces an item-level content
validity index (I-CVI) and scale content validity (S-CVI). In the
present study, the I-CVI was used as a selection method. The
recommendation for good content validity is to have at least 3
evaluators. In the case of 7 evaluators, like in the FinSCI study,
I-CVI 0.71 is interpreted as good and 0.86 or higher as excellent
(32). Only questions with I-CVI 0.71 or higher were chosen for
the final questionnaire.
The Finnish Association of People with Physical Disabilities
and the Finnish Association of Spinal Cord Injured Akson will
encourage survey recipients to respond to the questionnaire
by providing information on the study. The questionnaire will
be sent 2 times 2–3 weeks apart to get the highest possible
response rate.
SCI-specific functioning
SCI-specific environmental
factors
3 = significant or chronic problem). The maximum score on
the scale is 48. The higher the score, the more health problems
the respondent experiences. SCI-SCS has a proven reliability
and validity (19, 24) and is included in the Spinal Cord Injury
Research Evidence (SCIRE) database as a recommended health
measure to be used for people with SCI (25).
Spinal Cord Independence Measure – Self Report (SCIM-SR).
The SCIM-SR is a self-report questionnaire developed on the
basis of the SCIM (Spinal Cord Independence Measure) and was
designed to assess functioning in people with SCI. The SCIM
is recommended by The International Spinal Cord Society (26)
and by experts of functional ability from the National Institute
for Health and Welfare in Finland (27). The SCIM-SR shows
an excellent correlation with the SCIM. The self-reported
version is preferred because it enables active self- assessment
by patients with SCI. SCIM-SR is a valid and reliable measure
(20). SCIM-SR comprises 17 items collected from 3 sub-scales:
self-care, respiration, and sphincter management and mobility.
For each item, the person evaluates the extent of assistance or
assistive devices needed to complete activities and items on a
scale from 0 to 15 points. The maximum score is 100, and the
minimum is 0. The higher the score, the better the respondent’s
independent functioning (20).
Nottwil Environmental Factors Inventory Short Form (NEFI-S).
NEFI-S is a self-reported measure for assessing the impact of
environmental factors. The measure is based on the ICF clas-
sification and comprises 14 questions. In the NEFI-S measure,
respondents rate statements regarding accessibility and attitudes
based on their experiences in the previous 4 weeks. The response
alternatives are 0 = ”no influence”, 1 = ”made my life a bit har-
der”, and 2 = ”made my life a lot harder”. The maximum score
is 28. The higher the score, the more difficult the respondent
perceives his or her life to be and the more barriers he or she
has experienced over the preceding 4 weeks (21). As NEFI-S is
quite a new measure, minimal feedback exists on its suitability
and usage. NEFI-S has proven to be valid in 2 studies (28, 29).
Patient Reported Outcomes Measurement Information System
(PROMIS®). PROMIS® is a dynamic and extensive set of self-
report measures to evaluate various aspects of functioning or
quality of life. It comprises item banks relating to the physical,
social and psychological dimensions of functioning and a generic
global health short form. Single questions are also valid to use
alone. The measures have undergone extensive qualitative and
quantitative evaluations during the development phase from 2004
to 2014 (22). Following this, validation efforts have continued
in several studies of general and clinical populations, including
people with SCI (30, 31). The response options are mainly 5- or
6-level Likert scales measuring time or quantity (22).
The National Study of Health, Well-being and Service (FinSote).
The FinSote survey form includes 92 questions addressing
Interviews
A total of 45 volunteer survey respondents, 15 from each
university hospital district (OYS, Tays, HUS), will be asked
to participate in thematic interviews. To get a wide variety
of Subjects with SCI who will mirror the distribution of the
SCI population in Finland, the selection will be based on age,
sex, lesion level, municipality of residence and time since the
onset of SCI. This information is based on collected data from
the FinSCI study. One or 2 researchers will conduct the semi-
J Rehabil Med 51, 2019