Journal of Rehabilitation Medicine 51-4inkOmslag | Page 39
J Rehabil Med 2019; 51: 273–280
ORIGINAL REPORT
HEALTH, FUNCTIONING AND ACCESSIBILITY AMONG SPINAL CORD INJURY
POPULATION IN FINLAND: PROTOCOL FOR THE FINSCI STUDY
Susanna TALLQVIST, PT, MSc 1,2 , Heidi ANTTILA, PT, PhD 3 , Mauri KALLINEN, MD, PhD 4,5 , Eerika KOSKINEN, MD, PhD 6 ,
Harri HÄMÄLÄINEN, MD, PhD 7 , Anna-Maija KAUPPILA, MD, PhD 8 , Anni TÄCKMAN, BBA 9 , Aki VAINIONPÄÄ, MD, PhD 10 ,
Jari AROKOSKI, MD, PhD 7 and Sinikka HIEKKALA, PT, PhD 2,11
From the 1 University of Helsinki, Faculty of Medicine, 2 The Finnish Association of People with Physical Disabilities, Helsinki, 3 The National
Institute for Health and Welfare, Welfare Department, Ageing, Disability and Functioning Unit, 4 Central Finland Central Hospital,
Rehabilitation Department, Jyväskylä, 5 Center for Life Course Epidemiology Research, University of Oulu, Oulu, 6 Tampere University
Hospital, Department of Neurosciences and Rehabilitation, Tampere, 7 Helsinki University Hospital, Department of Internal Medicine and
Rehabilitation/Spinal Cord Injury Outpatient Clinic, Helsinki, 8 Oulu University Hospital, Department of Medical Rehabilitation/Spinal Cord
Injury Outpatient Clinic, Oulu, 9 The Finnish Association of Spinal Cord Injured Akson, Helsinki, 10 Seinäjoki Central Hospital, Department
of Rehabilitation, Seinäjoki and 11 Validia Rehabilitation, Helsinki, Finland
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 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 ad-
dition, questions from the following generic instru-
ments were chosen after a selection process: the
Patient-Reported Outcomes Measurement Informa-
tion 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 subse-
quent interviews will help in developing care and
rehabilitation policies and services for people with
spinal cord injury.
Key words: spinal cord injury; International Classification of
Functioning Disability and Health; data collection; questionn-
aire design; community survey; methodology.
Accepted Feb 6, 2019; Epub ahead of print Feb 25, 2019
J Rehabil Med 2019; 51: 273–280
Correspondence address: Susanna Tallqvist, Faculty of Medicine, Uni-
versity of Helsinki, FI-00014 Helsinki, Finland. E-mail: susannatall-
[email protected]
S
pinal cord injury (SCI) can be traumatic (TSCI), re-
sulting from an accident or injury, or non-traumatic
(NTSCI), resulting from a congenital disorder, disease
LAY ABSTRACT
The Finnish Spinal Cord Injury Study (FinSCI) collects
information from people with spinal cord injury about
their own health, ability to function, and their challen-
ges in terms of accessibility. The study includes a ques-
tionnaire 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 ques-
tionnaire. Interviews will be performed with 45 persons.
Interviews have several different themes, such as retur-
ning home, housing and living arrangements, employ-
ment situation and pathways to employment. The aim
of this study is to help to develop the care and reha-
bilitation policies for the spinal cord injury population,
to plan training models, and to provide information for
different parties and gain understanding of the lived ex-
perience of people with spinal cord injury.
or degenerative condition (1). The level and comple-
teness of injury determine the remaining sensory and
motor functions (2). Damage to the autonomic nervous
system leads to dysfunction in several other organs,
such as the urinary bladder, bowel and sexual organs
(3), as well as in the respiratory tract, blood vessels
and sweat glands (4). Due to the multifaceted nature of
their injury, people with SCI are significant consumers
of rehabilitation and healthcare services (5). Despite
experiencing limitations in functioning, people with
SCI pursue ordinary lives that encompass a home,
family, functioning in various domains, employment
and their own well-being and quality of life (6).
Health and functioning play a major role in enabling
people with SCI to participate in daily activities, social
events and society in general (6). In the International
Classification of Functioning, Disability and Health
(ICF) limitations in human functioning are viewed as a
mismatch between an individual’s health and the con-
crete requirements of his or her life situation (7). ICF
includes over 1,600 categories with Core Sets to help
focus on the most important factors of certain health
statuses, such as SCI (8). In the latest studies of SCI,
This is an open access article under the CC BY-NC license. www.medicaljournals.se/jrm
Journal Compilation © 2019 Foundation of Rehabilitation Information. ISSN 1650-1977
doi: 10.2340/16501977-2539