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University of Groningen Outcomes after Spinal Cord Injury Osterthun, Rutger

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University of Groningen

Outcomes after Spinal Cord Injury

Osterthun, Rutger

IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from it. Please check the document version below.

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Publication date: 2018

Link to publication in University of Groningen/UMCG research database

Citation for published version (APA):

Osterthun, R. (2018). Outcomes after Spinal Cord Injury. Rijksuniversiteit Groningen.

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Summary

125 A spinal cord injury (SCI) is an injury to the spinal cord, resulting in for example muscle weakness, loss of sensation and autonomic dysfunction below the level of injury. SCI can have a great impact on survival, health, performing activities, social participation and quality of life. Therefore, it is relevant to have insight into outcomes and their determinants in these domains. These insights may help to improve healthcare and outcomes. As outcomes may change over time as a result of for example changing epi-demiological characteristics, developments in health care and societal trends, regular evaluation of these outcomes is important.

This thesis provides insight into outcomes and their determinants of persons with SCI at the level of survival and functioning in the hospital, rehabilitation and post rehabilita-tion phase. Chapter 2 concerns the hospital phase, chapter 3 the rehabilitarehabilita-tion phase and chapter 4 the rehabilitation phase and some years thereafter. Finally, chapter 5 and

6 concern the post rehabilitation phase.

Chapter 1 presents a general introduction in which outcomes after SCI are explained.

Furthermore, epidemiological trends and gaps in the literature about outcomes after SCI are described. The reported trends concern an increasing incidence of persons with non-traumatic SCI, an increasing age at injury of persons with new traumatic SCI and an increase in persons who age with their SCI.

Chapter 2 describes characteristics of persons with new traumatic SCI who deceased

during their stay in Dutch hospitals in 2010. The chapter focuses on the application of end-of-life decisions (ELDs). For the purpose of this study correspondence of medical specialists about the hospital stays of the persons with SCI was analysed. It was found that 30 of the 159 patients with new traumatic SCI died during their initial hospital stay. Deceased patients were considerably older and had more comorbidities than patients who survived. Furthermore, their injuries were more frequently high cervical and motor complete. ELDs were reported in the majority of deaths (19). All consisted of non-treatment decisions.

Chapter 3 describes characteristics, length of stay and functional outcomes of persons

admitted to rehabilitation centres in the Netherlands and Flanders for their first inpatient rehabilitation. The chapter focuses on differences between persons with traumatic SCI and persons with non-traumatic SCI. Data were gathered with the Compacte Dataset

Dwarslaesie, which was a precursor of the current Nederlandse Dataset Dwarslaesie

(Dutch SCI Dataset). With this dataset information was obtained about 919 persons with SCI who were admitted to 11 rehabilitation centres between 2002 and 2007.

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126

Summary

Persons with non-traumatic SCI accounted for the majority (55%) of the Dutch and Flemish SCI population between 2002 and 2007. This group showed a more even gender distribution, more advanced age and less severe lesion characteristics than the group of persons with traumatic SCI. Persons with a non-traumatic SCI also showed a higher functional status on admission. Although persons with a traumatic SCI showed more functional gain during their inpatient rehabilitation, persons with a non-traumatic SCI had a shorter length of stay and a higher functional gain per day. In multivariable analyses, aetiology (traumatic/non-traumatic) was not an independent determinant of functional outcome of inpatient rehabilitation. Completeness of the injury and functional status on admission were the strongest independent predictors of functional outcomes of the inpatient rehabilitation.

It was concluded that the majority of persons with SCI admitted to Dutch and Flemish rehabilitation centres had a non-traumatic SCI. Although their characteristics clearly differed from those of persons with traumatic SCI, their inpatient rehabilitation was at least as effective (concerning functional gain) as that of persons with traumatic SCI.

Chapter 4 describes survival and causes of death within the cohort of the Umbrella

project. Purpose of this project was to evaluate the course and recovery of physical

capacity and mobility after a SCI. In this project over 220 wheelchair dependent per-sons were followed from the start of their rehabilitation until five years after discharge. Participants had traumatic or non-traumatic SCI and were aged between 18 and 65 years. Persons with a malignant tumour as cause of SCI were excluded.

As it was felt unnerving that a large part of the participants died during the follow-up, it was decided to analyse survival, causes of death and determinants of death. For this purpose, additional information was collected from the rehabilitation physician or general practitioner.

Of the 222 participants, 27 (12%) died during the follow-up period of about six years. This was over five times more than expected, based on death statistics of the general population with the same age and sex. The three most common causes of death were cardiovascular diseases (37%), pulmonary diseases (30%) and tumours (15%). Determinants of death were a higher age, non-traumatic SCI, a family history of cardiovascular disease, less social support and a history of other medical conditions on admission to the rehabilitation centre. Independent determinants of death were a non-traumatic SCI, a higher age at injury and a history of other medical conditions. The studies of chapter 5 and chapter 6 were conducted with data of the ALLRISC project. This project focused on the long-term consequences of SCI with respect to secondary health conditions, fitness and quality of life. In this cross-sectional project, participants

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Summary

127 were persons with long-standing SCI (at least 10 years) who used a wheelchair for their everyday mobility. The current age of the analysed group ranged from 28 to 65 years.

The purpose of chapter 5 was to gain insight into functional independence of persons with long-standing SCI. The study focused in particular on the relation of functional independence with the time since injury. Functional independence was measured with the Spinal Cord Independence Measure III. This measure had not been used before to describe long-term functioning.

For this study 226 persons with a motor complete SCI were analysed. The mean time since onset of the SCI was 24 years. Participants were divided into three groups based on time since injury, namely 10 to 19 years, 20 to 29 years and 30 years or more. No significant differences in functional independence were found between the three groups. Persons with a tetraplegia, autonomic dysreflexia, hypotension, more than four secondary health conditions and a high waist circumference functioned less independently. Age and time since injury were not associated with functional independence. The level of injury (the presence of a tetraplegia) was the strongest independent determinant of functional independence. A high waist circumference was the other independent determinant.

The purpose of chapter 6 was to gain insight into the relation between the physical capacity (POpeak) and participation (measured with the Restrictions scale of the

Utre-chtse Schaal voor Evaluatie van Revalidatie-Participatie). As in chapter 5, data of the ALLRISC project were analysed. For chapter 6, 244 persons were analysed, of whom

150 performed a maximal exercise test. Persons who did not perform an exercise test were older, had a longer time since injury, had more frequently a tetraplegia, were lower educated, had more frequently more than four secondary health conditions and lower functional independence and participation scores. The median time since injury of the group of persons who performed the exercise test was 21 years. In this group a higher POpeak was related to better participation levels after controlling for relevant confounders. Functional independence was the only confounder.

Chapter 7 presents the general discussion. The main results of the thesis are discussed

within the context of the changing SCI population in the Netherlands and other coun-tries. Furthermore, this chapter describes implications of the thesis and suggestions for further research.

The main implication for the hospital phase concerns the importance of the presence of care providers with knowledge of long-term consequences of SCI in the hospital phase. Amongst other things, this ensures that persons with SCI get appropriate information on future perspectives and are referred to appropriate rehabilitation facilities.

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128

Summary

As to the rehabilitation phase and the post rehabilitation phase this thesis provides clues on the importance of paying attention to the importance of a healthy lifestyle during rehabilitation and afterwards since it may improve or maintain functional levels.

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