Long-term secondary health conditions,
fitness and active lifestyle
Jacinthe Adriaansen, MD (Researcher)
Marcel
Post, PhD (Project
leader)
Eline Lindeman, MD, PhD
Floris van Asbeck, MD, PhD
General
International clinical guidelines (Consortium Spinal Cord Medicine) support long-term follow-up of persons with SCI, but this is not regular practice in The Netherlands. Unless persons with SCI take the initiative in case of health problems, they stay out sight of specialized care. Therefore, it is likely that there is an under-diagnosis and under-treatment of long-term health problems in persons with SCI in The Netherlands. The over-all aim of this study is to assess the prevalence and impact of long-term health conditions and de-conditioning. The desired content and frequency of regular medical check-ups will be estimated from the results of this study: the prevalence of health issues discovered, the number of persons receiving new or modified treatment or being referred to other health professionals and the opinion of the physicians and participants with SCI regarding the usefulness of the aftercare check-up. The results of this study will be used to found a system of structured life-long SCI care in The Netherlands. Nearly all measurements used in this study were earlier used in the Umbrella project, allowing comparisons between persons with recent SCI to persons with long-standing SCI.
Objectives
(1a) To study the prevalence and impact of secondary complications and de-conditioning in persons with long-term SCI. It is hypothesized that longer duration of injury is associated with a higher prevalence of secondary health conditions and de-conditioning.
(1b) To study the impact of secondary complications and de-conditioning on active lifestyle activities, participation, and QoL in persons with long-term SCI. It is hypothesized that people with more secondary complications and de-conditioning will show less active lifestyle and lower levels of activities, participation and QoL.
(2) Second, this cross-sectional study will allow identification of persons suffering from de-conditioning or other secondary complications who are eligible for the intervention studies in this research program.
Design
Cross-sectional study including anamnesis, physical and laboratory testing and interviews using a time since injury (TSI)-stratified group of 300 persons with SCI. Strata will be 10-20 yrs, 20-30 yrs and more than 30 yrs after SCI.
Participants
Inclusion criteria are:
- At least 10 yrs after onset of SCI
- Wheelchair dependent, at least for longer distances
- Age at injury between 18 and 35 yrs
Exclusion criteria are:
- Insufficient mastery of the Dutch language to respond to an oral interview and test instructions.
Procedure
Patients will be recruited from 8 rehabilitation hospital records. After collecting all eligible patients based on information from medical files, a TSI-stratified random sample of 400 persons will be drawn, accounting for 25% non-response (unable to trace, unwilling to participate, exclusion criteria). A major effort will be made to trace patients without valid address in the hospital databases, if necessary supported by DON (1000 members with SCI). If however necessary because of a larger than expected non-response, a second random sample will be drawn. All patients will be invited for a one-day aftercare check-up. Physical, mental or social problems requiring medical attention revealed by this check-up will be addressed as part of usual rehabilitation aftercare (follow-up visits, interventions, referral, etc).
Publications
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Secondary health conditions in persons with a spinal cord injury for at least 10 years: design of a comprehensive long-term cross-sectional study. Adriaansen JJ, van Asbeck FW, Lindeman E, van der Woude LH, de Groot S, Post MW. Disabil Rehabil. 2013; 35(13):1104-10.
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Secondary health conditions in persons with spinal cord injury: A longitudinal study from one to five years post-discharge. Adriaansen JJ, Post MW, de Groot S, van Asbeck FW, Stolwijk-Swüste JM, Tepper M, Lindeman E. J Rehabil Med. 2013; 45(10) 1016-22.
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Outcomes of neurogenic bowel management in individuals living with a spinal cord injury for at least ten years. Adriaansen JJ, van Asbeck FW, van Kuppevelt D, Snoek GJ, Post MW. Arch Phys Med Rehabil. 2015. Accepted.
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