Quality of life in the first years after spinal cord injury
Christel van Leeuwen, MSc (Researcher)
Marcel Post, PhD (Project leader)
Lucas van der Woude, PhD
Eline Lindeman, PhD
Floris van Asbeck, MD, PhD
Casper van Koppenhagen, MD
Sonja de Groot, PhD
On December 13, 2011, Christel van Leeuwen will defend her dissertation entitled:
Quality of life in the first years after spinal cord injury.
Summary
The
present thesis describes the results of research on the course of Quality of
Life (QoL) after SCI, and its psychosocial predictors between the start of
active rehabilitation and 5 years after discharge from inpatient
rehabilitation. The results are derived from the Umbrella project and the
SPIQUE project. In the Umbrella project 225 Dutch persons with SCI were
longitudinally followed until one year after discharge. The SPIQUE project
comprises an extra follow-up measurement of all persons who participated in
the Umbrella project, five years after discharge.
1. Which psychological factors are related to QoL in persons with SCI?
2. What is the course of life satisfaction of persons with SCI during and after initial rehabilitation up to five years after discharge and how can we interpret changes in life
satisfaction?
3. How are psychosocial factors related to QoL in persons with SCI during and
after initial rehabilitation up to five years after discharge?
To
examine how persons differ in their adaptation to an SCI and to find risk
factors for persistent low levels of life satisfaction,
the aim of chapter
3 is to identify different trajectories in the course of life satisfaction
and to find predictors to distinguish between the trajectories. Five
life satisfaction trajectories were identified in the period between the start
of active rehabilitation and 5 years after discharge: a low life satisfaction
trajectory (27%; low median scores (3-5) at all time-points), a high life
satisfaction trajectory (16.5%; high median scores (8-10.5) at all
time-points), a recovery trajectory (23.3%; improvements from 3 to 9), a
deterioration trajectory (2.4%; a decline from 9 to 4), and an intermediate
life satisfaction trajectory which was somewhat less distinctive and consisted
of persons with fluctuating life satisfaction scores at different time points
(30.6%; median scores from 6 to 7). Demographic, lesion, physical and
social characteristics at the start of rehabilitation cannot predict life
satisfaction trajectories. Therefore, psychological factors might better
predict in which trajectory a person will end up.
In Chapter 5, 6, and 7 it is examined how psychosocial factors are related to life satisfaction in persons with SCI. Chapter 5 describes the course of social support in persons with recently acquired SCI, and examines direct and indirect relationships between social support and life satisfaction over time. Three types of social support are distinguished: everyday social support (social companionship and emotional support), support in problems situations (advice and practical help), and esteem support (receiving compliments and appreciation). The results show that all three types of social support followed a different course after SCI. While everyday social support and support in problem situations decreased over time, esteem support remained high and stable over time. Moreover, everyday social support and support in problem situations showed a direct relationship with life satisfaction over time. Higher everyday social support was related to higher life satisfaction, and support in problem situations was related to lower life satisfaction. Furthermore, evidence was found for a buffer (indirect) effect of social support on life satisfaction: support in problem situations and esteem support moderated the impact of distress on life satisfaction in persons with SCI. Professionals should pay extra attention to functionally dependent persons with SCI who receive little social support. These persons might be at risk for poor adjustment.
Chapter
6 describes
the course of life satisfaction in persons with SCI during the first five
years after discharge from inpatient rehabilitation. Moreover, it examines
which lesion characteristics, physical, and psychosocial factors
are determinants of life satisfaction. No significant changes in life
satisfaction were found between discharge and two years later, however there
were significant increases from two to five years post discharge. High
functional independence, low pain, high everyday social support and high
self-efficacy were related to higher life satisfaction. Together, these
factors explain a substantial part of the variance in life satisfaction.
Chapter
8
summarizes the main
findings and the general aim of this thesis. The systematic review revealed
that psychological resources, such as self-esteem and having a feeling of
control and purpose in life, are strongly and consistently related to QoL
after SCI.
The empirical findings identified five
trajectories in the course of life satisfaction between the start of active
SCI rehabilitation and five years after discharge. It seems that
persons at risk for poor long-term adjustment can be identified in an early
stage after SCI by asking two life satisfaction questions. Comparing
different life satisfaction questions with each other is necessary to
interpret what a change in life satisfaction means. Psychosocial
factors turned out to be related to QoL in addition to physical factors and played
an important role to better understand the complex relationships between
functioning and subjective QoL in persons with SCI. Intervention
studies are needed to optimize psychological support for persons with SCI. In
particular, studies which
target to strengthen personal resources and the social network of persons with
SCI might contribute to improve
rehabilitation programs.
You can read more about this project in the Dutch newsletters
of April
2009, November
2009, May
2010, November
2010, and August
2011 or in the Dutch report
for the participants of SPIQUE.
Publications from this thesis
The associations between psychological variables and quality of life ratings in persons with spinal cord injury: A systematic review. Van Leeuwen CM, Kraaijeveld S, Post MW, Lindeman E. Spinal Cord 2011 [Epub ahead of print].
Trajectories in the course of life satisfaction after spinal cord injury: identification and predictors. Van Leeuwen CM, Post MW, Hoekstra T, van der Woude LH, de Groot S, Snoek GJ, Mulder DG, Lindeman E. Arch Phys Med Rehabil 2011 Feb; 92(2): 207-13.
Changes in life satisfaction in persons with spinal cord injury during and after inpatient rehabilitation: Adaptation or measurement bias? Van Leeuwen CM, Post MW, van der Woude LH, de Groot S, Smit C, van Kuppevelt D, Lindeman E. Qual Life Res. (in press).
Social support and life satisfaction in spinal cord injury during and up to 1 year after inpatient rehabilitation. Van Leeuwen C, Post M, van Asbeck F, van der Woude L, de Groot S, Lindeman E. J Rehabil Med 42(3): 265-71, 2010.
Life satisfaction in people with spinal cord injury during the first five years after discharge from inpatient rehabilitation. Van Leeuwen CM, Post MW, van Asbeck FW, Bongers-Janssen HM, van der Woude LH, de Groot S, Lindeman E. Disability and Rehabilitation 2011 [Epub ahead of print].
Relationships between activities, participation, personal factors, mental health, and life satisfaction in persons with spinal cord injury. Van Leeuwen CM, Post MW, Westers P, van der Woude LH, de Groot S, Sluis T, Slootman H, Lindeman E. Arch Phys Med Rehabil 2011 [Epub ahead of print].
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