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

Spinal Cord Injury (SCI) leads to serious physical disability and has important consequences for someone’s social (work and relationships) and emotional life (loss and grief). In rehabilitation, persons with SCI especially learn to deal with the physical restrictions and medical complications of their changed body, to function as independently as possible in daily life. In order to be able to live an independent life it is also important to deal with the psychological and social consequences of the SCI. According to the patient organization ‘Dwarslaesie Organisatie Nederland’ and professionals working in rehabilitation, there is too little focus on psychosocial goals in SCI rehabilitation. To improve rehabilitation programs for patients with SCI, it is necessary to better understand their psychosocial functioning.

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.

The results of this thesis contribute to better understand the psychosocial recovery after SCI. It is shown that large differences exist between persons in how they adjust to their SCI. It seems possible to identify persons at risk for poor long-term adjustment in an early stage after the SCI. Directions for psychosocial intervention studies are given. Further, it is argued that more attention should be paid to psychosocial issues during rehabilitation. The role of the psychologist should be extended to provide adequate support in dealing with the SCI and the emotions involved. This might benefit persons with SCI, their family and friends, and professionals working in SCI rehabilitation.

Chapter 1 introduces the central concept of this thesis: Quality of Life (QoL). It is explained why it is interesting to study the course of QoL after SCI and which aspects of QoL are studied. Furthermore, the design of the Umbrella and SPIQUE project is described: what are the in- and exclusion criteria, which measurement instruments are used, and when do the measurement occasions take place? Moreover, a description of the main psychosocial factors ‘appraisals’ (the way in which an individual thinks or appraises his/her disease), ‘neuroticism’ (the emotional stability of a person), ‘self-efficacy’ (a person’s belief or sense of confidence in his/her own ability to perform a particular task or behaviour successfully in the future), and ‘social support’ (the perceived support by family and friends) is given. Finally, the general aim and the outline of the present thesis are described. The three main research questions are:

Which psychological factors are related to QoL in persons with SCI?
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?
How are psychosocial factors related to QoL in persons with SCI during and after initial rehabilitation up to five years after discharge?

Chapter 2 reviews the literature on relations between psychological factors and QoL of persons with SCI. A total of 48 studies were included in the review. Many psychological variables were strongly and consistently related to QoL, but for some others no or inconsistent evidence was found. Psychological resources, such as self-esteem and a feeling of control and purpose in life, were strongly and consistently related with QoL after SCI. Interestingly, one of the most popular topics among psychologists - coping behaviors - showed much less consistent results warranting further study. The literature on psychological factors and QoL in persons with SCI is limited in several ways. First of all, psychological terminology is inconsistent, especially with respect to coping and appraisals. Acceptance, for instance, is used both as a coping variable and as an appraisal. A second limitation is the conceptual proximity between dependent and independent variables. For instance, perceived stress is employed as an emotion-based coping variable in one study, and as a QoL outcome in other studies. Other limitations concern the wide variety of questionnaires, the overrepresentation of small studies and of studies with a cross-sectional design. Recommendation for further research are to perform longitudinal studies with sufficient sample size, to increase uniformity of questionnaires, and to specify and operationalize constructs clearly.

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.

To understand how we should interpret changes in life satisfaction over time, chapter 4 analyses changes in life satisfaction scores in three of the five trajectories distinguished in chapter 3. Three different life satisfaction scores are compared: a life satisfaction ‘now’ score, a ‘comparison’ score between life satisfaction ‘now’ and life satisfaction ‘before the SCI’, and a retrospective rating of life satisfaction ‘before the SCI’. Assumptions are made whether changes in life satisfaction reflect adaptation or refer to measurement bias. The results of chapter 4 suggest that adaptation to severe disability is a multi-faceted process that varies between persons. It seems that adaptation occurs in persons in the recovery and high life satisfaction trajectories. Adaptation does not seem to occur in persons in the low life satisfaction trajectory. The life satisfaction ‘now’ score seems to underestimate adaptation to SCI in persons in the high life satisfaction trajectory, while it seems to overestimate adaptation in persons in the low life satisfaction trajectory. Comparing different life satisfaction scores with each other is necessary to interpret what a change in life satisfaction means. Only considering life satisfaction ‘now’ scores can result in wrong conclusions. The ‘comparison’ question might be a better instrument to measure adaptation to SCI.

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 7 describes how different psychological factors are related to functioning and QoL in persons with SCI. This chapter tries to combine two different theoretical models. First, relationships between activities, participation, mental health, and life satisfaction are clarified. It turned out that mental health and life satisfaction can be seen as two separate, but interrelated outcome variables. Second, it is specified how self-efficacy, neuroticism, and appraisals interacted with activities, participation, mental health and life satisfaction. It appears that the psychological factors self-efficacy, neuroticism, and appraisals play an important role to better understand the complex relationships between functioning and subjective QoL. More specifically: a higher self-efficacy and a lower score on neuroticism are directly related to a higher mental health. Moreover, a higher self-efficacy is related to a higher score on the appraisal acceptance, which is further related to a higher life satisfaction. In contrast, a higher score on neuroticism is related to a higher score on the appraisal helplessness, which if further related to a lower life satisfaction. Although these results are theoretically, this might imply that both cognitive behavioural therapy - aimed at reducing neuroticism - and self-management interventions - aimed at improving self-efficacy - are different approaches that might positively influence mental health and life satisfaction of persons with SCI.

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].