Marcel W. M. Post

Predictors of health status and life satisfaction in spinal cord injury

OBJECTIVE To analyze relationships between injury-related variables, demographic variables, functional health status, and life satisfaction of people with spinal cord injury (SCI). DESIGN Cross-sectional survey. SETTING A community in the Netherlands. SUBJECTS Three hundred eighteen people with SCI, aged 18 to 65 years. Mean age was 39.4 years and mean time after injury was 3.6 years. MAIN OUTCOME MEASURES Health status was measured with the SIP68. Its six scales were aggregated to three dimensions, measuring physical, psychologic, and social functioning. Life satisfaction was measured with the Life Satisfaction Questionnaire. Data were analyzed by path analysis using LISREL V8. RESULTS Obtained scores showed that respondents suffered from serious limitations in physical functioning and social functioning, had only a few limitations in psychologic functioning, and were satisfied with their lives in general and with most life domains. Physical functioning was accurately predicted by injury-related variables, but psychologic functioning was not. Next to level and completeness of the injury, the number of secondary complications turned out to be a predictor of functional health. In a path model that had a close fit with the data, injury-related variables were related to health status but not to life satisfaction. Social functioning (-.48), marital status (-.38), psychologic functioning (-.19), and age (-.16) were significant predictors of life satisfaction (total R2=.44). CONCLUSIONS This study points out the high prevalence of secondary complications and their importance to the health status of people with SCI. Level of social and psychologic functioning are more important predictors of life satisfaction than the seriousness of the injury.

Measures used to assess burden among caregivers of stroke patients: a review

Objective: To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties. Design: A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reliability and responsiveness. Results: The literature search resulted in 45 measures of caregiver outcomes, including 16 different measures of caregiver burden. About half of the scales were used only once and were not further described. Nearly all instruments measure the various dimensions of burden (competency, negative feelings, social relations, participation problems, physical and mental health and economic aspects), but not in the same proportions. Most measures showed good internal consistency, and validity was demonstrated for all measures except one. However, not much is known about the reliability and responsiveness of these measures. Conclusions: No measure has proven superiority above others. Future research should focus on comparisons between existing instruments and on their reliability and responsiveness.

Quality of life and the ICIDH: towards an integrated conceptual model for rehabilitation outcomes research

Objective: The development of the International Classification of Impairments, Disabilities and Handicaps (ICIDH) has led to the assessment of a wider range of relevant rehabilitation outcomes, but a need for a further broadening exists. In this article, a new proposal for an extended ICIDH is made. Method: Review of the literature on quality of life and of attempts to integrate the World Health Organization (WHO) biopsychosocial model and the ICIDH. Results: Our review shows three operationalizations of the concept of quality of life: as health, as well-being and, preferably, as a superordinate construct. None of the attempts to integrate the WHO biopsychosocial model have been entirely successful. Our new proposal is characterized by (a) incorporation of the organ, person and social levels of the ICIDH, (b) distinction between objective and subjective aspects of quality of life as a second axis in the model, resulting in somatic sensations as the subjective part of the organ level, perceived health as the subjective part of the person level and domainspecific life satisfaction as the subjective part of the social level, and (c) separation of the concept of general well-being or happiness as being distinct from the ICIDH. The proposal model is intended to serve as a framework in which different outcomes can be positioned in relation to each other. Conclusion: Our model is intuitively appealing and remains close to familiar concepts and models. However, it is as yet far from perfect, and we hope to provoke discussion to help further refinement.

Rehabilitation of stroke patients needs a family-centred approach

Purpose. To highlight the importance of the spouse in stroke rehabilitation. Stroke not only affects the patients, but also their families, but rehabilitation practice is still primarily focused on the patient only. Method. Analysis of the position of the spouse and possible consequences of stroke for the spouse, based on the literature. Results. Three roles of spouses are described: (i) the role of caregiver, as the spouse often provides extensive and comprehensive care for the patient; (ii) the role of client, as this informal care may lead to physical and emotional strain; and (iii) the role of family member, as the stroke affects the interpersonal relationships within the family system, not least the emotional and sexual relationship between the partners. This analysis provides an understanding of problems experienced by spouses as roles conflict and identifies topics for assessment and interventions directed at the spouse in the acute phase, rehabilitation phase and chronic phase of stroke. Conclusion. We support a family-centred approach in which the strengths and needs of all family members, the patient with stroke included, are considered throughout all phases of the rehabilitation process.

Long-Term Health-Related Quality of Life After Aneurysmal Subarachnoid Hemorrhage Relationship With Psychological Symptoms and Personality Characteristics

Background and Purpose— Many patients who survive an aneurysmal subarachnoid hemorrhage experience decreased health-related quality of life (HRQoL). Physical factors have been identified as determinants of HRQoL. We describe long-term HRQoL and assessed whether psychological symptoms and personality characteristics determine HRQoL after subarachnoid hemorrhage. Methods— In a cross-sectional study in 141 patients living independently in the community 2 to 4 years after subarachnoid hemorrhage, we assessed whether HRQoL, evaluated by the Stroke Specific Quality of Life scale, was related to psychological symptoms (mood disorders, fatigue, and cognitive complaints), personality characteristics (neuroticism and passive coping style), demographic characteristics, and subarachnoid hemorrhage disease characteristics. Results— Best Stroke Specific Quality of Life scale scores were found in the physical domain and worst in the emotional and social domains. Thirty-two percent reported anxiety, 23% depression, and 67% fatigue. Mood (beta between −0.42 and −0.18), fatigue (beta between −0.40 and −0.24), and cognitive complaints (beta between −0.46 and −0.16) were strongly associated with Stroke Specific Quality of Life scale scores in multivariate regression analyses. Conclusion— Depression, anxiety, and fatigue were present in a substantial proportion of patients and were strongly related to decreased HRQoL. These symptoms identified are helpful to tailor rehabilitation to the needs of patients in the chronic phase after subarachnoid hemorrhage.

ICF Core Sets for individuals with spinal cord injury in the long-term context

Study design:A formal decision-making and consensus process integrating evidence gathered from preparatory studies was followed.Objectives:The objective of the study was to report on the results of the consensus process to develop the first version of a Comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set, and a Brief ICF Core Set for individuals with spinal cord injury (SCI) in the long-term context.Setting:The consensus conference took place in Switzerland. Preparatory studies were performed worldwide.Methods:Preparatory studies included an expert survey, a systematic literature review, a qualitative study and empirical data collection involving people with SCI. Relevant ICF categories were identified in a formal consensus process by international experts from different backgrounds.Results:The preparatory studies identified a set of 595 ICF categories at the second, third or fourth level. A total of 34 experts from 31 countries attended the consensus conference (12 physicians, 6 physical therapists, 5 occupational therapists, 6 nurses, 3 psychologists and 2 social workers). Altogether, 168 second-, third- or fourth-level categories were included in the Comprehensive ICF Core with 44 categories from body functions, 19 from body structures, 64 from activities and participation and 41 from environmental factors. The Brief Core Set included a total of 33 second-level categories with 9 on body functions, 4 on body structures, 11 on activities and participation and 9 on environmental factors.Conclusion:A formal consensus process integrating evidence and expert opinion based on the ICF led to the definition of the ICF Core Sets for individuals with SCI in the long-term context. Further validation of this first version is needed.

Upper extremity musculoskeletal pain during and after rehabilitation in wheelchair-using persons with a spinal cord injury

Study design:Prospective cohort study.Objectives:To study upper extremity musculoskeletal pain during and after rehabilitation in wheelchair-using subjects with a spinal cord injury (SCI) and its relation with lesion characteristics, muscle strength and functional outcome.Setting:Eight rehabilitation centers with an SCI unit in the Netherlands.Methods:Using a questionnaire, number, frequency and seriousness of musculoskeletal pain complaints of the upper extremity were measured. A pain score for the wrist, elbow and shoulder joints was calculated by multiplying the seriousness by the frequency of pain complaints. An overall score was obtained by adding the scores of the three joints of both upper extremities. Muscle strength was determined by manual muscle testing. The motor score of the functional independence measure provided a functional outcome. All outcomes were obtained at four test occasions during and 1 year after rehabilitation.Results:Upper extremity pain and shoulder pain decreased over time (30%) during the latter part of in-patient rehabilitation (P<0.001). Subjects with tetraplegia (TP) showed more musculoskeletal pain than subjects with paraplegia (PP) (P<0.001). Upper extremity pain and shoulder pain were significantly inversely related to functional outcome (P<0.001). Muscle strength was significantly inversely related to shoulder pain (P<0.001). Musculoskeletal pain at the beginning of rehabilitation and BMI were strong predictors for pain 1 year after in-patient rehabilitation (P<0.001).Conclusions:Subjects with TP are at a higher risk for upper extremity musculoskeletal pain and for shoulder pain than subjects with PP. Higher muscle strength and higher functional outcome are related to fewer upper extremity complaints.

Spinal cord injury pain: the influence of psychologic factors and impact on quality of life.

ObjectivesTo examine chronic pain prevalence in a spinal cord injury (SCI) population, and to determine the influence of psychologic factors on SCI pain and impact of SCI pain on quality of life. MethodsFive hundred seventy-five persons with SCI were asked to participate in the study. Demographic, SCI, and pain characteristics were obtained. The Chronic Pain Grade, anger items of the Profile of Mood States, Illness Cognition Questionnaire, Pain Coping and Cognition List, and Patient Health Questionnaire were used. General health and well-being were assessed with 0-10 scales. The influence of psychologic factors was assessed with regression analyses controlling for person and injury characteristics and pain intensity. ResultsResponse rate was 49%. SCI pain prevalence was high (77.1%). More internal pain control and coping, less catastrophizing, higher level of lesion, and nontraumatic SCI cause were associated with less pain intensity. More pain was associated with higher pain-related disability. Lower catastrophizing was related to better health. Less SCI helplessness and catastrophizing, greater SCI acceptance and lower anger levels were related to higher well-being. Higher levels of SCI helplessness, catastrophizing, and anger were related to higher depression levels. Pain intensity showed no independent relationships with health, well-being, and depression in the regression analyses. DiscussionChronic SCI pain and quality of life were both largely associated with several psychologic factors of which pain catastrophizing and SCI helplessness were most important. Psychologic intervention programs may be useful for persons suffering from chronic SCI pain to improve their quality of life.

Psychosocial Functioning of Spouses of Patients With Stroke From Initial Inpatient Rehabilitation to 3 Years Poststroke: Course and Relations With Coping Strategies

Background and Purpose— Few studies have focused on long-term changes in the caregiving experience after stroke. This study assessed changes in the psychosocial functioning of spouses (burden, depressive symptoms, harmony in the relationship between patient and spouse, and social relations) during the first 3 years after stroke and identified predictors of the course of spouses’ psychosocial functioning based on the characteristics of patients and spouses with special emphasis on coping style. Methods— We examined 211 couples shortly after the patient’s admission to a rehabilitation center, 197 2 months after discharge, 187 1 year poststroke, and 121 3 years poststroke. Burden was assessed using the Caregiver Strain Index, depressive symptoms with the Goldberg Depression Scale, harmony in the relationship with the Interactional Problem Solving Inventory, and social relations with the Social Support List. Multilevel regression analyses were performed. Results— A significant effect of time (P<0.01) was found for all 4 aspects of spouses’ psychosocial functioning. Although burden decreased, harmony in the relationship and social relations also decreased. The depression score showed a nonlinear pattern with an initial decrease but a long-term increase. All outcomes were significantly related to caregiver coping strategies. A total of 15% to 27% of the variance in psychosocial functioning could be explained. Conclusions— Follow-up of spouses of patients with stroke requires not only assessment of burden, but also other aspects of psychosocial functioning like harmony in the relationship, depression, and social relations, because our results show negative long-term consequences of stroke for these aspects of caregiver quality of life.

Spouses' quality of life 1 year after stroke: Prediction at the start of clinical rehabilitation

Background and Purpose: The purpose of this prospective study was to identify early predictors of spouses’ quality of life at 1 year after stroke. Methods: At the start of clinical rehabilitation patient and caregiver characteristics, psychological factors, harmony in the relationship and social support were assessed. One year after stroke, caregiver burden (Caregiver Strain Index), life satisfaction (Life Satisfaction Checklist) and depressive symptoms (Goldberg Depression Scale) were assessed in 187 participants. Multiple regression analyses were performed. Results: About 80% of the spouses reported low quality of life on one or more of the measures; 52% reported depressive symptoms, 54% significant strain and only 50% was satisfied with life as a whole. The regression analysis identified ‘passive coping strategy of the caregiver’ as the most important predictor. ADL dependency was the only baseline patient characteristic significantly related to burden and life satisfaction, but explained just 0–4% of the variance. Conclusions: A large proportion of caregivers perceive impaired quality of life 1 year after stroke. Caregivers at risk should be identified at the start of rehabilitation by means of coping measurement instruments or selected anamneses on coping.