Physical strain

Arm and hand functioning is a top priority in the rehabilitation of persons with a cervical spinal cord injury (C-SCI). The present PhD thesis has been focused on the evaluation and training of arm hand skilled performance in persons with C-SCI. Arm hand skilled performance (AHSP) refers to the activity level of the arm and hand according the International Classification of Functioning, Disability and Health (ICF), which can be divided into basic activities, like grasping, reaching and manipulating, and complex activities, like self-care skills involving whole body movements. Previous studies revealed the need for adequate measurement instruments and insight in the rehabilitation outcome of arm hand skilled performance. The different studies in the present thesis were set up against the background of 1) the importance of arm and hand functioning in persons with CSCI, 2) the development towards an increased interest on the ICF activity level, 3) the trend from therapist-centred care to client-centred care in which the patient is actively involved in the decision-making and goal-setting, and 4) the increasing age of the SCI population and the demand to meet the changing needs of these patients. The main aim of this doctoral thesis has been to find a solution to improve AHSP, also incorporating current rehabilitation trends in order to meet the demand on the changing individual needs on AHSP over the lifespan of the individual C-SCI patient.

Firstly, in order to be able to measure rehabilitation outcome and progress on AHSP, adequate measurement instruments are necessary. Based on this need, the Van Lieshout Test (VLT) has been developed earlier. The VLT is a reliable and valid instrument which assesses the actual performance of arm and hand skills at the level of basic activities. However, in order to provide information on rehabilitation progress, a measurement instrument should be sensitive to detect changes over time. In chapter 2, the responsiveness of the VLT was assessed using different responsiveness measures based on data from a longitudinal multi-centre cohort study. The responsiveness of the VLT was found to be good in different subgroups of patients with C-SCI during rehabilitation. In order to establish whether the VLT would provide different information on AHSP compared to other measures, the responsiveness of the VLT was correlated with the responsiveness of the Grasp Release Test (GRT) (at the level of basic activities) and the Functional Independence Measure (FIM) and the Quadriplegia Index of Function (QIF) (at the level of complex activities). As expected, the correlation between the responsiveness of the VLT and the responsiveness of the complex AHSP measures was low. The correlation between the responsiveness of the GRT and the VLT, measuring both basic activities, was higher, although not as high as expected. This may be attributed to the fact that the GRT is a quantitative measure and focuses only on palmar and lateral grasps, whereas the VLT scores the quality of the performance and incorporates different aspects of arm and hand use. This indicates that the VLT may provide important extra information regarding AHSP. In chapter 2, it was concluded that the VLT is a valuable measurement tool that is sensitive to changeand that provides important information on basic AHSP in persons with C-SCI.

Secondly, to establish good rehabilitation management of AHSP, insight in the rehabilitation outcome of AHSP is essential. Chapter 3 describes the rehabilitation outcome of AHSP on the level of basic and complex activities of 57 persons with CSCI. Data from a large longitudinal multi-centre cohort study demonstrated an improvement in AHSP on the level of basic and complex activities during the 2 stages of rehabilitation. Major improvement took place in the first stage of rehabilitation, but there was also a significant improvement in AHSP in the second stage. This was more pronounced in patients with a motor incomplete lesion, who also achieved a higher level of AHSP than those with a motor complete lesion. After rehabilitation (up to one year after discharge), little changes in AHSP were found. More importantly, no decline in AHSP was observed. It was demonstrated that further improvement after discharge is feasible, indicating that persons with CSCI may have residual potential that was not yet addressed during rehabilitation. To stimulate this residual potential has been one of the reasons that sparked of the development of the ToCUEST training concept in this thesis. Good outcome measures and insight in the rehabilitation outcome of AHSP have been the prerequisites needed to investigate the main aim of the present thesis, i.e. to find a solution to improve AHSP in C-SCI using motor training programs.

Chapter 4 reports on a systematic review to obtain an overview of current motor training programs on arm and hand functioning in C-SCI. Training programs, both at function and at activity level, have been selected and their outcome has been described according to different levels of the ICF. This review revealed only a small number of appropriate studies with a wide variety as to interventions, group size and outcome measurements used. The description of the training content was often vague. In general, it was found that motor training programs may improve arm and hand functioning at function and/or activity level in both the acute and the chronic phase. Furthermore, it was reported that most progress in motor functioning was observed on the level that was trained at, indicating that the specificity of the training is important. It was concluded that a client-centred taskoriented training program might overcome the problems of a wide variety of upper extremity activities and the impracticality to train all upper limb activities. Based on a) the findings in chapter 4, b) the residual potential found in C-SCI persons, c) the trend regarding the change from therapist-centred to patientcentred care, d) the lack of a theoretical framework and a demand for guidelines to apply client-centred care into practice, and e) the demand to find a solution to the changing individual needs of the aging SCI population, a conceptual framework for training was developed and described in chapter 5. Three components, i.e. clientcenteredness with individual goal setting, task-oriented training, and modular training were integrated into one concept. The client-centred component included both extracting individual goals and defining and objectifying these goals. The taskoriented component incorporated a task analysis and the composition of an individual training program. This concept was translated into a task-oriented client-centred upper extremity training module (ToCUEST), including guidelines which, step by step, explain how to apply this concept into practice. The Canadian Occupational Performance Measure (COPM) was used to identify patient’s specific needs whereafter the Goal Attainment Scale (GAS) was applied to define and objectify individual goals. A task analysis was found to be essential to map limiting and facilitating factors of the person, the task and the environment and to identify which factors should be trained. An individual task-oriented training program was composed, based on principles of motor learning, training physiology and the use of assistive devices. These principles were linked with evidence on training programs for tetraplegic persons. An individual case example was used to illustrate the guidelines.

In order to assess the benefits and possibilities of a modular client-centred taskoriented training, the ToCUEST module was evaluated, based on a clinical intervention study as reported in chapter 6. The ToCUEST module was applied in different subgroups of persons with C-SCI, i.e. in patients during rehabilitation and after discharge, including persons with a motor complete and incomplete lesion. A control group of patients receiving standard training was identified. Three selfselected goals were trained during 8 weeks. Measures were taken at 3 months after the start of the rehabilitation, before ToCUEST, directly after training, at follow-up (3 months post-training) and at discharge. It was reported that ToCUEST leads to an improvement in specific AHSP, as measured by the COPM Performance and Satisfaction scores and by the GAS score, and to an improvement in general AHSP, as measured by the VLT, the QIF and the FIM, in different subgroups of C-SCI persons. This improvement was seen after training, but effects also remained at follow-up.

In conclusion, adequate outcome measures and insight in rehabilitation outcome are prerequisites to establish a good rehabilitation policy. Regarding outcome measures, the VLT has been found to be a valuable measurement tool to be used in clinical practice and for research purposes to provide information on basic AHSP. Monitoring AHSP during and after rehabilitation is very important in C-SCI, not only at the level of basic activities, but also at the level of complex activities. It allows obtaining insight in the rehabilitation process, motivating patients and keeping clinicians aware of the residual potential for further improvement in AHSP. Individual outcome measures should be used in conjunction with standardized measures in order to evaluate interventions and training programs, especially if they are directed to personal needs. A modular task-oriented client-centred training in upper extremity skilled performance has been shown to be beneficial to improve AHSP in different subgroups of persons with C-SCI. Focusing on specific goals, next to basic package of care, instead of on a comprehensive package of care, may reduce inpatient stay. This enables patients to experience the challenges their home environment poses at an earlier stage. The latter in combination with the opportunity for re-admission for a modular training on specific needs formulated by the patients helps them to take up their life quicker. Modular task-oriented client-centred training may also be the key to the demand to meet the changing needs in the elderly SCI population. The residual potential, present in persons who have been discharged, can be used in order to train on individual needs which changes over the patient’s lifespan.

Contact address

Sonja de Groot / Lucas van der Woude

Center for Human Movement Sciences

University Medical Center Groningen

University of Groningen

Antonius Deusinglaan 1

9713AV Groningen,

The Netherlands

Summary