Is manual wheelchair satisfaction related to active lifestyle and participation in people with a spinal cord injury?

STUDY DESIGN: Cross-sectional study. OBJECTIVES: To describe the satisfaction of the manual wheelchair user with hand rim wheelchair-related aspects (for example, dimensions, weight and comfort) and wheelchair service-related aspects and to determine the relationship between wheelchair users' satisfaction, personal and lesion characteristics, and active lifestyle and participation in persons with a spinal cord injury (SCI). SETTING: Eight Dutch rehabilitation centers with a specialized SCI unit. METHODS: The Dutch version of the Quebec user evaluation of satisfaction with assistive technology (D-QUEST) was filled out by 109 participants 1 year after discharge from inpatient SCI rehabilitation. Relationships between the D-QUEST scores and personal and lesion characteristics, and active lifestyle and participation (physical activity scale for individuals with physical disabilities (PASIPD), Utrecht activity list (UAL), mobility range and social behavior subscales of the SIP68 (SIPSOC)) were determined. RESULTS: A high level of satisfaction was found with wheelchair-related aspects. The participants were less satisfied with the service-related aspects. Participants with an incomplete lesion were slightly more satisfied regarding both aspects than those with a complete lesion. A higher satisfaction regarding wheelchair dimensions and a higher overall satisfaction were related to a more active lifestyle. Persons who were more satisfied with the simplicity of use of the wheelchair had a better participation score. CONCLUSION: Dutch persons with SCI are in general quite satisfied with their hand rim wheelchair. Some aspects of the wheelchair (dimensions and simplicity of use) are important to optimize as these are related to an active lifestyle and participation.

Comparison of two Dutch follow-up care models for spinal cord-injured patients and their impact on health problems, re-admissions and quality of care.

OBJECTIVE: To evaluate whether transmural care for people with spinal cord injury living in the community has more impact on health outcomes than traditional follow-up care within the Netherlands. DESIGN: Quasi-experiment with 12 months of follow-up. SETTING: Eight Dutch rehabilitation centres. SUBJECTS: Thirty-one patients who received transmural care in two ;experimental' rehabilitation centres were compared with a matched sample of 31 patients having received ;usual follow-up care' in six other rehabilitation centres. INTERVENTION: The core component of the transmural care consists of a transmural nurse, who 'liaises' between former patients living in the community, primary care professionals and the rehabilitation team. The transmural care model provides activities to support patients and their family/partners and activities to promote continuity of care. MAIN MEASURES: The prevalence of pressure sores and urinary tract infections; the number and duration of re-admissions to hospital and rehabilitation centre due to pressure sores, bladder and bowel problems; and the experienced quality of follow-up care. RESULTS: The transmural care, as implemented, did not influence the health outcomes. The prevalence of pressure sores, urinary tract infections and the number of re-admissions (due to pressure sores, bladder and bowel problems) was respectively 13, 13 and 4 in the intervention group versus 14, 15 and 6 in the usual follow-up care group. Since the transmural care had been incompletely implemented and there were methodological and practical limitations, we formulated no final conclusions regarding its effectiveness. CONCLUSION: Implementing the transmural care model strictly according to protocol may improve its effectiveness.

Health behaviour of persons with spinal cord injury.

STUDY DESIGN: Postal survey. OBJECTIVE: To describe the health behaviour of persons with spinal cord injury (SCI) living in the community and the relationships between health behaviour, respondent/injury characteristics, and health-related variables: the presence and number of secondary impairments, readmissions in rehabilitation centre and hospital, and perceived health. SETTING: Members of the Dutch Association of Patients with SCI. METHODS: The frequency of health behaviours, that delay or prevent secondary impairments, was assessed by means of a 22-item, self-report questionnaire. The questionnaire was also focused on 13 secondary impairments. RESULTS: The frequency of engaging in health behaviour varied considerably between the respondents. Variance was observed between and within the health behaviours measured. The respondents did not frequently engage in pressure relief methods when sitting/driving in their wheelchair. Almost no statistical differences were observed between health behaviour of subgroups of respondents based on respondent/injury characteristics. However, the total health behaviour scores increased significantly with increasing age and pressure sore prevention was significantly more applied in persons with a complete lesion. Health behaviour was significantly more applied in respondents who had one or more secondary impairments. CONCLUSION: As secondary impairments are prevalent among persons with SCI and education on a healthy lifestyle is a core component of every rehabilitation programme, it is of great importance to rigorously test the efficacy of health behaviours promoted during rehabilitation. Therefore, longitudinal research is recommended.

Follow-up care for persons with spinal cord injury living in the community: a systematic review of interventions and their evaluation.

STUDY DESIGN: Systematic review. OBJECTIVES: (1) To describe and compare follow-up care programmes, performed by rehabilitation centres, for persons with spinal cord injury (SCI) and (2) to describe the effects of these programmes regarding the occurrence of secondary impairments, well-being, the quality and costs of care. METHODS: A systematic literature search was conducted in MEDLINE (1972-2003) and CINAHL (1982-2003). Publications were selected about medical and/or nursing follow-up care to SCI patients living in the community performed by or with rehabilitation facilities for SCI patients. The aim of the follow-up care should be a decrease of secondary impairments, an improvement of well-being, an improvement of the quality and/or a decrease of the costs of care. RESULTS: The search resulted in 24 papers. The descriptions of the programmes in these papers were sometimes rather scattered, vague or brief. The most important methods were telemedicine (six programmes; of which five were performed in the same rehabilitation centre), outpatient consulting hours (six programmes), home visits (three programmes, and case management (one programme). Eight other programmes combined several methods (ie outpatient consulting hours, home visits, peer teaching and support, outings, ongoing support, therapy from several care disciplines, SCI education, providing SCI expertise and support to community health-care providers, coordination of care with community nursing agencies). In all, 16 programmes have been evaluated to some degree. In general the quality of the studies was low. Most evaluations were pre-experimental in design. Only three were quasi-experimental, and two programmes were experimental in design. Although several studies claimed positive effects, it was not possible to draw conclusions on the effect of follow-up care on the occurrence of secondary impairments, well-being, the quality and costs of care. CONCLUSION: There is a need for the development, the publication and the well-designed evaluation of follow-up care programmes for persons with SCI.

Transmural care in the rehabilitation sector: implementation experiences with a transmural care model for people with spinal cord injury.

PURPOSES: The purpose of this article is first to describe the development and content of a transmural care model in the rehabilitation sector, which aims to reduce the number and severity of health problems of people with spinal cord injury (SCI) and improve the continuity of care. Second, the purpose is to describe the applicability and implementation experiences of a transmural care model in the rehabilitation sector. METHODS: The transmural care model was developed in cooperation with the Dutch Association of Spinal Cord Injured Patients, community nurses, general practitioners, rehabilitation nurses, rehabilitation managers, physiatrists and researchers. The core component of the care model consists of a transmural nurse, who 'liaises' between people with SCI living in the community, professional primary care professionals and the rehabilitation centre. The transmural care model provides a job description containing activities to support people with SCI and their family/partners and activities to promote continuity of care. The transmural care model was implemented in two Dutch rehabilitation centres. The following three aspects, as experienced by the transmural nurses, were evaluated: the extent to which the care model was implemented; enabling factors and barriers for implementation; strength and weakness of the care model. RESULTS: The transmural care model was not implemented in all its details, with a clear difference between the two rehabilitation centres. Enabling factors and barriers for implementation were found at three levels: 1. the level of the individual professional (e.g. competencies, attitude and motivation), 2. the organisational and financing level (e.g. availability of facilities and finances), and 3. the social context (the opinion of colleagues, managers and other professionals involved with the care). The most important weakness experienced was that there was not enough time to put all the activities into practice. The strength of the care model lies in the combination of support of patients after discharge, support of and cooperation with primary care professionals, and feedback of experiences to the clinical rehabilitation teams. CONCLUSION: We recommend further improving and implementing the care model and encourage other care professionals and researchers to share their implementation experiences of follow-up care innovations for people with SCI.

Post-discharge nursing problems of spinal cord injured patients: on which fields can nurses contribute to rehabilitation?

OBJECTIVE: To identify nursing problems of spinal cord injured (SCI) patients after discharge from clinical rehabilitation and to identify gaps in the nursing care regarding the prevention of these problems. DESIGN: The study had an exploratory character and was divided into three phases. Phase 1 had a qualitative nature. Eight patients were interviewed to obtain insight into experienced problems after discharge. In phase 2, a panel of experts regarding nursing care for SCI patients selected nursing problems out of all problems mentioned. Phase 3 consisted of a mailed questionnaire including the nursing problem areas identified in phase 2, which was sent to all patients that were discharged during the last 18 months before the study. SETTING: Specialist rehabilitation centre, The Netherlands. SUBJECTS: Eight patients participated in phase 1 (100% response rate), 35 nurses participated in phase 2 (87.5% response rate) and 35 patients participated in phase 3 (62.5% response rate). RESULTS: The most important nursing problems in the response group appeared to be: limitations to activities of daily living, having difficulties in asking for help (assertiveness), pain, coping with the disability, dependency on personal help and problems with changed bladder regulation. The respondents made several suggestions for improving nursing care, involving both clinical care and care after discharge. CONCLUSIONS: SCI patients experience serious problems after discharge from clinical rehabilitation. Nurses can give input on a wide variety of these problems.