Journal of Rehabilitation Medicine 51-4inkOmslag | Page 45

Health and functioning in the SCI population in Finland: FINSCI study
solution, the Government Programme envisages the
centralization of functions into clear autonomous re-
gions (counties) in terms of tasks and authority. The
main reasons for the reform are that people in different
municipalities are not on equal ground regarding social
or healthcare services (37). The results of the present
study can offer unique data for planning and organizing
equal services. FinSCI results will be implemented
into all organizations dealing with the SCI population.
Concerning the rarity of SCI, the degree of treatment
complexity or special requirements in the provision
of care, centralization of care and rehabilitation is still
needed. FinSCI aims to provide new knowledge for
healthcare professionals, political decision-makers and
for people with SCI themselves.
The FinSCI study has some limitations. Participant
selection was based on appointment registrations from
each university hospital, and the data were collected for
an approximate 6-year period. AIS classification was one
inclusion criteria and was found in most of the patients,
but 162 patients were dismissed for lack of it. Further-
more, not all subjects with SCI need the services of the
outpatient clinics, or they might have had a congenital
SCI, a progressive new NTSCI or other exclusion crite-
ria. Nevertheless, this containment was deemed neces-
sary to minimize confounding factors. Unfortunately,
FinSCI could not join the InSCI study started earlier to
collect data from different countries. Moreover, FinSCI
has consciously left out legacy health-related quality of
life instruments, which are usually regarded as sufficient
to assess well-being and quality of life. Items in these
instruments most often assess health and functioning,
but in very general ways. For this reason, no separate
measure concerning quality of life, except PROMIS
Global Health, was included in the study.
We can learn what matters to the SCI population by
generating new evidence of the health, functioning and
accessibility of subjects with SCI. We believe that this
new knowledge will offer guidance for better lifelong
SCI rehabilitation and follow-up. The study results will
be utilized in the development of care and rehabilitation
policies of patients with SCI and in the planning of train-
ing models and information provided to various parties
involved. University hospitals may utilize the results to
develop their patient register systems. The cohort study
will yield information on measures that could be em-
ployed in patient register systems to systematically mo-
nitor the functioning of people with SCI. The National
Institute for Health and Welfare can utilize the results
to harmonize regional data collection in the planning of
social welfare and healthcare management. The Finnish
Association of People with Physical Disabilities and the
Finnish Association of Spinal Cord Injured Akson can
use the results to advocate for people with SCI.
279
ACKNOWLEDGEMENTS
We thank the MD, PhD Heikki Numminen at the Department
of Neurology, Tampere University Hospital for his support and
advice in the research. This study was supported by the Finnish
Association of People with Physical Disabilities (2017-2019),
Oulu University Hospital (grant VTR 2017), Department of
Internal Medicine and Rehabilitation, Helsinki University
Hospital (grants HUS/53/2017 §9, 9.6.2017 and HUS/76/2018
§ 11, 18.4.2018), and Validia Rehabilitation (grant HUS-VTR
9.3.2017).
REFERENCES
1. Bickenbach J, Boldt I, Brinkhof M, Chamberlain J, Cripps
R, Fitzharris Mea. A global picture of spinal cord injury.
In: Bickenbach J, Officer A, Shakespeare T, von Groote P,
editors. International perspectives on spinal cord injury.
Geneva: WHO; 2013, p. 13–41.
2. Kirshblum SC, Burns SP, Biering-Sorensen F, Donovan
W, Graves DE, Jha A, et al. International standards for
neurological classification of spinal cord injury (revised
2011). J Spinal Cord Med 2011; 34: 535–546.
3. Taweel WA, Seyam R. Neurogenic bladder in spinal cord
injury patients. Res Rep Urol 2015; 7: 85–99.
4. Hagen EM. Acute complications of spinal cord injuries.
World J Orthop 2015; 6: 17–23.
5. Burns AS, O’Connell C. The challenge of spinal cord injury
care in the developing world. J Spinal Cord Med 2012;
35: 3–8.
6. Bickenbach JE, Biering-Sorensen F, Knott J, Shakespeare
T, Stucki G, Tharion G, et al. Understanding spinal cord
injury. In: Bickenbach J, Officer A, Shakespeare T, von
Groote P, editors. International perspectives on spinal cord
injury. Geneva: WHO; 2013, p. 3–10.
7. WHO. International Classification of Functioning, Disability
and Health (ICF). Geneva: World Health Organization;
2001.
8. ICF Research Branch. 2017. [Cited 2018 Sep 26]. Available
from: https://www.icf-research-branch.org.
9. Fekete C, Post MW, Bickenbach J, Middleton J, Prodinger
B, Selb M, et al. A structured approach to capture the
lived experience of spinal cord injury: data model and
questionnaire of the International Spinal Cord Injury Com-
munity Survey. Am J Phys Med Rehabil 2017; 96: S16.
10. Prodinger B, Ballert CS, Cieza A, SwiSCI Study Group.
Setting up a cohort study of functioning: From classifica-
tion to measurement. J Rehabil Med 2016; 48: 131–140.
11. Finlex. 2011. [Cited 2018 Sep 26]. Available from: https://
www.finlex.fi/fi/laki/ajantasa/kumotut/2011/20110336.
12. Vainionpää A, Ahoniemi E, Koskinen E, Numminen H,
Väärälä E, Pesonen J, et al. Selkäydinvammaisen hyvä
kuntoutuskäytäntö. [Rehabilitation practice guideline for
spinal cord injury patients.] Helsinki: THL; 2017.
13. World Population Aging. 2015. [Cited 2018 Sep 26]. Av-
ailable from: http://www.un.org/en/development/desa/
population/publications/pdf/ageing/WPA2015_Report.pdf.
14. Koskinen E, Väärälä E, Alen M, Kallinen M, Vainionpää A.
[Incidence of spinal cord injuries in Finland higher than
expected.] Lääkärilehti 2017; 39: 2160–2166 (in Finnish).
15. Devivo MJ. Epidemiology of traumatic spinal cord injury:
trends and future implications. Spinal Cord 2012; 50:
365–372.
16. Panté MD, American Academy of Orthopaedic Surgeons.
Advanced assessment and treatment of trauma. Sudbury,
MA: Jones and Bartlett Publishers; 2010.
17. Gross-Hemmi MH, Post MW, Ehrmann C, Fekete C, Hasnan
N, Middleton JW, et al. Study Protocol of the International
Spinal Cord Injury (InSCI) Community Survey. Am J Phys
Med Rehabil 2017; 96: S34.
J Rehabil Med 51, 2019