Quality of life in persons with a spinal cord injury:
a longitudinal study on mental health status and life satisfaction in relation to psychosocial factors, physical capacity and secondary impairments.

Quality of life in spinal cord injury

A longitudinal study on mental health status and life satisfaction in relation
to psychosocial factors, physical capacity and secondary impairments.

Introduction:
Spinal cord injury (SCI) is an incurable condition that has serious
consequences for the quality of life of the persons involved. In the
Netherlands, 12.000 - 15.000 persons have had a SCI, most at a relatively young
age (Van Asbeck et al 2000).
The life expectance of persons with a spinal cord injury is strongly upgraded
because of improvement in medical care throughout the last decades.
Although many persons with SCI regain good quality of life, compared to the
general population the prevalence of psychosocial problems is substantially
higher and societal participation lags behind. The patients organization
Dwarslaesie Organisatie Nederland asked in a recent study for more research
into psychosocial functioning of person with SCI to improve rehabilitation care
for this group (Abma et al 2004).
Available literature shows that persons with SCI frequently suffer from
psychosocial problems. It is estimated that 30% shows clinical levels of stress
or depression (North 1999). Factors that do show a relationship with perceived
quality of life after SCI are physical factors like severity of injury, fitness
and pain and psychosocial factors like active coping behaviour and social
support (Noreau 1995, Dijkers 1997, North 1999, Post et al 1999). However,
nearly all available studies were of cross-sectional design, and longitudinal
studies are needed to reveal the development of quality of life after SCI and
its determinants (Dijkers 1997).
The development of quality of life during and after rehabilitation can only
partly be answered out of the Umbrella-project, a prospective cohort study in
which 205 persons with SCI were included and were followed from the start of
functional rehabilitation until one year after discharge. The life situation of
a person with SCI develops during the first few years after injury, and the
last measurement at one year after discharge is therefore too early to reflect
a more or less stable situation (Dijkers 1997, Post et al 1998, North 1999,
Post et al 2002, Scott Richards 2004).
An extended follow-up is necessary to provide insights in the quality of life
of persons with SCI and the factors that positively or negatively influence the
development of their quality of life. Recommendations for clinical
rehabilitation and aftercare can be given on the basis of these insights. It is
therefore that this new program will be started.

To obtain comprehension in the development of quality of life during and after
clinical rehabilitation and the factors that influence it. This leads to the
following questions:

Primary questions
(1) What is the progress of mental health and well-being of persons with a
spinal cord injury from the start from clinical rehabilitation up to 5 years
after discharge?

(2) What is the influence of (a) secundary impairments, (b) physical capacity
and mobility and (c) psychosocial factors on the mental health and well-being
during and after rehabilitation?

Secondary questions:
(3) What is the progress of (a) handfunction, (b) longfunction, (c) physical
capacity en (d) cardiovascular risk factors between 1 en 5 years after
discharge of clinical rehabilitation and what are the determinants?
(4) How many persons where taught face down sleeping position during
rehabilitation and is there a relation between sleeping position and prevention
of pressure sores?
(5) What is the workparticipation 5 years after discharge of clinical
rehabilitation, what are the determinants of werkresuming and what is the
satisfaction with the worksituation?

Persons with a spinal cord injury were tested five years after clinical
rehabilitation with questionnaires, physical examination,
wheelchairskilltesting, handfunctiontest, longfunctiontest and an exercisetest
to give insight in the questions mentioned above.

The study population will be sent a questionairy at home. On the testingday
there will be more questions asked. The study population will sustain an
exercisetest and skilltests. They are familiar with all the tests and sustained
it several times during their clinical en policlinical rehabilitation period.
There were no negative events noted during these tests in the past.