Abstract
With today’s specialized medical care, life expectancy of persons with a spinal cord injury (SCI) has considerably improved over the last decades. However, it seems that with increasing age and time since injury (TSI), more health problems arise in persons with a SCI. These “secondary health conditions (SHCs)” have been
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defined as: “physical or psychological health conditions that are influenced directly or indirectly by the presence of a disability or underlying physical impairment”. Examples of SHCs are bladder- and bowel disorders, pressure ulcers, spasticity, musculoskeletal and neuropathic pain and cardiovascular and respiratory problems. These SHCs hamper an active lifestyle and quality of life on top of the primary motor and sensory impairments due to the SCI. Avoiding a downward spiral, that threatens persons aging with SCI, is crucial. Unfortunately, no regular long-term rehabilitation aftercare system is currently operational in the Netherlands, nor have relationships between inactive lifestyle, de-conditioning, and SHCs been systematically evaluated in long-term SCI. In response to this lack of knowledge, the research program “Active LifestyLe Rehabilitation Interventions in aging Spinal Cord injury” (ALLRISC) was developed. ALLRISC focused on the preservation and promotion of an active lifestyle, physical fitness and health in wheelchair-dependent persons with a SCI for at least ten years.The program consisted of one cross-sectional study and three Randomized Clinical Trials. This Thesis describes a part of the results from the cross-sectional study within the ALLRISC research program. The general aim of the present Thesis was to describe the prevalence and impact of several SHCs in persons with long-term SCI and to examine possible determinants of the presence of these SHCs. The main hypothesis was that a longer duration of injury would be associated with a higher prevalence of SHCs. Persons were included if they had a traumatic or non-traumatic SCI with a time since injury of at least 10 years, an age at injury between 18 and 35 years, a current age between 28 and 65 years, and they had to be wheelchair-dependent (hand-rim propelled or electric), at least for longer distances (>500 m). Persons were excluded if they had insufficient mastery of the Dutch language to respond to an oral interview. Participants were invited for a one-day visit to one the eight participating rehabilitation centres with a speciality in SCI rehabilitation. The visit included an extensive medical assessment and physical examination performed by a rehabilitation physician and an oral interview and several physical tests performed by a research assistant. Two weeks before the visit to the rehabilitation centre, participants were asked to complete a self-report questionnaire. This Thesis provides more knowledge on the health status and functioning of persons aging with SCI living in the Netherlands and helps clinicians to formulate requirements and guidelines for a lifespan covering rehabilitation aftercare system, thereby preventing and reducing the impact of SHCs.
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