Finnish Spinal Cord Injury Study (FinSCI)

NCT04649814 | Completed

• 1 other identifier: 42106
• Study Type: observational
• Target: 1,773
• Locations: 1 country
• Sites: 1

Brief Summary

The purpose of the Finnish Spinal Cord Injury Study (FinSCI) is to identify factors related to the health and functioning of people with spinal cord injury (SCI), their challenges with accessibility and how such factors are interconnected. The International Classification of Functioning, Disability and Health (ICF) is used in the study as a structured framework. The study participants will be recruited from three SCI outpatient clinics, which together are responsible for the life-time care of the SCI population in Finland. Mixed methods are used including a questionnaire and interviews. The survey will be formed from patient-reported instruments; SCI-specified Spinal Cord Injury Secondary Condition Scale, Spinal Cord Independence Measure, Nottwil Environmental Factors Inventory Short Form and selected items of the generic instruments of Patient-Reported Outcomes Measurement Information System and National study of health, well-being and service. The survey covers 51 ICF categories. The study results can help develop care and rehabilitation policies with SCI, the planning of training models and information provided to various parties involved.

Conditions

Spinal Cord Injuries; Health, Subjective

Keywords

patient reported outcomes; ICF; Survey; Interview

Outcome Measures

Primary Outcomes (1)

• Cohort Survey of Health, Functioning, and accessibility of spinal cord injury population in Finland

  Survey includes parameters of secondary conditions of spinal cord injury, independency, environmental factors, health, well-being and services

  1.2.-31.7.2019

Interventions

Questionnaire OTHER

Questionnaire for all, interview for part of the respondents.

Also known as: interview

Eligibility Criteria

• Age: 16 Years+
• Sex: all
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Acute care, immediate rehabilitation and life-long multi-professional follow-up, care and rehabilitation of SCI have been centralised at 3 university hospitals: Oulu (OYS), Tampere (Tays) and Helsinki (HUS) university hospitals. They serve the whole SCI-population, both previously and newly injured, in their hospital district areas. The study participants were selected by exploring the patient registries in OYS, Tays and HUS. A more systematic data collection of the SCI population started in different outpatient clinics at different times (Tays 5/2011, OYS 1/2012 and in HUS 8/2013). The selection of patients for the study performed from the start of the systematic data collection and lasted in Tays and OYS till the end of 2017, and in HUS - till the end of June 2018.

You may qualify if:

• years or over
• Traumatic or non-traumatic SCI
• ASIA-classification A,B,C tai D
• Time since onset of SCI over 6 months
• Client of HUS, Tays or Oys SCI outpatient clinic

You may not qualify if:

• Innate SCI
• Progressive new non-traumatic SCI
• Neurodegenerative disease
• Multiple sclerosis amyotrophic lateral sclerosisGuillain-Barre syndrome Institutional care

Sponsors & Collaborators

• The Finnish Association of People with Physical Disabilities: lead
• Helsinki University Central Hospital: collaborator
• Tampere University Hospital: collaborator
• Oulu University Hospital: collaborator
• The Finnish Association of Spinal Cord Injured Akson: collaborator
• Finnish Institute for Health and Welfare: collaborator

Study Sites (1)

The Finnish Association of People with Physical Disabilities

Helsinki, Uusimaa, 00280, Finland

Location

Related Publications (5)

• Tallqvist S, Anttila H, Kallinen M, Koskinen E, Hamalainen H, Kauppila AM, Tackman A, Vainionpaa A, Arokoski J, Hiekkala S. Health, functioning and accessibility among spinal cord injury population in Finland: Protocol for the FinSCI study. J Rehabil Med. 2019 Apr 1;51(4):273-280. doi: 10.2340/16501977-2539.

  PMID: 30805657 BACKGROUND

• Tallqvist S, Kauppila AM, Vainionpaa A, Koskinen E, Bergman P, Anttila H, Hamalainen H, Tackman A, Kallinen M, Arokoski J, Hiekkala S. Prevalence of comorbidities and secondary health conditions among the Finnish population with spinal cord injury. Spinal Cord. 2022 Jul;60(7):618-627. doi: 10.1038/s41393-021-00704-7. Epub 2021 Sep 11.

  PMID: 34511604 BACKGROUND

• Majamaki K, Tallqvist S, Vainionpaa A, Koskinen E, Kauppila AM, Bergman P, Anttila H, Hamalainen H, Tackman A, Kallinen M, Arokoski J, Hiekkala S. Functional independence in the Finnish spinal cord injury population. Spinal Cord. 2022 Jul;60(7):628-634. doi: 10.1038/s41393-021-00700-x. Epub 2021 Sep 15.

  PMID: 34526631 BACKGROUND

• Eskola K, Koskinen E, Anttila H, Tallqvist S, Bergman P, Kallinen M, Hamalainen H, Kauppila AM, Tackman A, Vainionpaa A, Arokoski J, Rajavaara M, Hiekkala S. Health-related factors for work participation in persons with spinal cord injury in Finland. J Rehabil Med. 2022 Feb 3;54:jrm00255. doi: 10.2340/jrm.v53.59.

  PMID: 34888701 BACKGROUND

• Poutanen J, Anttila H, Tallqvist S, Kallinen M, Koskinen E, Hamalainen H, Kauppila AM, Tackman A, Vainionpaa A, Arokoski J, Hiekkala S. Physical health among the Finnish spinal cord injury population according to the Patient Reported Outcome Measurement Information System (PROMIS(R)). J Spinal Cord Med. 2022 Nov;45(6):865-873. doi: 10.1080/10790268.2021.1989184. Epub 2021 Nov 2.

  PMID: 34726579 BACKGROUND

Related Links

• Project webpage

MeSH Terms

Conditions

Spinal Cord Injuries

Interventions

Surveys and Questionnaires; Interviews as Topic

Condition Hierarchy (Ancestors)

Spinal Cord Diseases; Central Nervous System Diseases; Nervous System Diseases; Trauma, Nervous System; Wounds and Injuries

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Hiekkala, PhD

  Research Director

  STUDY DIRECTOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 1 Day
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: August 30, 2018
• First Posted: December 2, 2020
• Study Start: February 1, 2019
• Primary Completion: December 15, 2019
• Study Completion: December 15, 2019
• Last Updated: February 28, 2024

Record last verified: 2024-02

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL
• Time Frame: The protocol has been published.
• Access Criteria: To be able to log in Internet.

Locations

FI (1)