Health problems of persons with spinal cord injury living in the Netherlands

Purpose. To investigate the prevalence of health problems among persons with spinal cord injury (SCI) living in the Netherlands, to identify the problems experienced as most important, and to analyse the experienced impact of these most important problems on daily activities and social life.

Method. Postal survey among all members of the Dutch Association of Patients with SCI. The questionnaire focused on 26 health problems: 13 secondary impairments, 8 problems of daily living and 5 psychosocial problems.

Results. The respondents (response rate 45.5%, 454 persons) experienced an average of 8 health problems. The most frequently occurring problems regarded bladder and bowel regulation, spasms, pain, oedema and sexuality. Except for oedema, these problems were also most often cited as the most important. The most disabling condition for both daily and social activities was pain. Few significant relationships were found between the prevalence of health problems and the level, completeness and duration of the injury or gender.

Conclusion. Persons with SCI living in the community experience many health problems and limitations in daily activities and social life due to these problems. The occurrence of these problems does not diminish with increasing time after injury. This strongly emphasises the need for follow-up care.     

What promotes physical activity after spinal cord injury? An interview study from a patient perspective

Purpose. Physical activity in people with traumatic spinal cord injury (SCI) is of importance not only for maintaining health but also for increasing the possibilities of living an independent life. Physical inactivity leads to poorer muscular and cardiovascular conditioning and sub-optimal levels of functioning. To help people with SCI to achieve optimum physical activity, it is important to understand what promotes the incorporation of regular physical activity into daily life. The aim of this study was thus to identify factors that may promote participation in physical activity among people with spinal cord injuries.

Method. Qualitative multiple case studies. Sixteen participants with SCI were interviewed.

Result. Four main themes of promoting factors could be identified. They were: using cognitive and behavioural strategies; finding supporting environmental solutions; exploring motivation post injury; and capturing new frames of reference.

Conclusion. By utilising the motivational power of role models, together with the other motivational factors identified in this study, such as identifying relevant individual motives post injury and capturing new frames of reference, the process towards physical active life may be facilitated.     

Deep vein thrombosis and pulmonary embolism in an ambulatory chronic stroke patient

Purpose: Deep vein thrombosis (DVT) is a well-known complication of stroke and frequently develops in acute stroke patients. Immobility in stroke patients increases the risk of DVT and pulmonary embolism (PE). The incidence of DVT in non-ambulatory stroke patients is more frequent than the incidence in ambulatory stroke patients. We report a case of DVT and PE in an ambulatory chronic stroke patient.

Method: Initial physical examination showed heat and swelling of hemiplegic leg. The patient was only able to ambulate with the assist of a monocane and a plastic leaf spring orthosis due to ankle dorsiflexor weakness. The patient was treated with anticoagulation and inferior vena cava filter placement.

Results: After long-term anticoagulation, follow-up studies revealed satisfactory resolution of DVT and PE.

Conclusions: We present a case of DVT and PE which developed during the chronic stage of stroke, 2 years from the onset of stroke, and review the cause of DVT.     

Evaluation of patient education in spinal cord injury rehabilitation: knowledge, problem-solving and perceived importance

Purpose. Through inpatient education programmes the person with spinal cord injury (SCI) learns to understand and monitor his or her own physical, emotional and social well-being. The purpose of this study was to determine the patients' knowledge and problem-solving skills regarding SCI at admission, discharge and follow-up at 6 months after discharge; and to determine the perceived importance of each content topic included in the education programme.

Methods. A one-group repeated measures design was used to evaluate the outcomes. Knowledge was evaluated with a Multiple Choice Questionnaire (MCQ). Problem-solving ability based on participants' responses to Life Situation Scenarios relevant to each topic area was rated on a standardized four-point criterion reference scale. Perceived importance for each topic area was rated on a five-point Likert scale.

Results. Twenty-three participants completed all assessments. There was significant improvement in MCQ scores from admission to discharge (P = 0.04) and admission to follow-up (P = 0.02). For problem-solving ability, there was a trend toward improvement in all content topics with significant improvement from admission to follow-up for the topic of bowel care (P = 0.004). However, many participants continued to demonstrate poor problem-solving ability. Bowel, Bladder and Skin Care were consistently perceived as the most important education topics.

Conclusions. Improvements in knowledge do not necessarily translate to improvements in problem-solving ability even for the topics perceived as important. This may indicate the need to incorporate more active learning strategies or contextually based strategies within patient education programmes to facilitate the transfer of knowledge within life situations.     

Foot and leg problems are important determinants of functional status in community dwelling older people

Purpose. To determine whether foot and leg problems are independently associated with functional status in a community sample of older people after adjusting for the influence of socio-demographic, physical and medical factors.

Method. Data were analysed from the Health Status of Older People project, a population-based study involving a random sample of 1000 community-dwelling people aged 65 - 94 years (533 females, 467 males, mean age 73.4 years ± 5.87). A structured interview and brief physical examination were used to investigate the associations between self-reported foot and leg problems and functional status. Functional status was assessed using: (i) timed 'Up & Go' test, (ii) self-reported difficulty climbing stairs, (iii) self-reported difficulty walking one kilometer, (iv) self-reported difficulty performing instrumental activities of daily living (IADLs), and (v) self-reported history of one or more falls in the previous 12 months. These associations were then explored after adjusting for socio-demographic, physical and medical factors.

Results. Thirty-six percent of the sample reported having foot or leg problems. Univariate analyses revealed that people with foot and leg problems were significantly more likely to exhibit poorer functional status in all parameters measured. After adjusting for socio-demographic, physical and medical factors, foot and leg problems remained significantly associated with impaired timed 'Up & Go' performance (OR = 2.15, 95%CI 1.55 - 2.97), difficulty climbing stairs (OR = 3.33, 95%CI 1.98 - 5.61), difficulty walking one kilometer (OR = 3.13, 95%CI 2.09 - 4.69), and history of falling (OR = 1.73, 95%CI 1.26 - 2.37).

Conclusions. Foot and leg problems are reported by one in three community-dwelling people aged 65 years and older. Independent of the influence of age, gender, common medical conditions and other socio-demographic factors, foot and leg problems have a significant impact on the ability to perform functional tasks integral to independent living.     

A study of the physical rehabilitation and psychological state of patients who sustained limb loss as a result of terrorist activity in Northern Ireland 1969-2003

Objective. To benchmark the psychological state and physical rehabilitation of patients who have sustained limb loss as a result of terrorist activity in Northern Ireland and to determine their satisfaction with the period of primary prosthetic rehabilitation and the artificial limb.

Method. All patients who sustained limb loss as a result of the Troubles and were referred to our rehabilitation centre were sent a questionnaire. The main outcome measures were the SIGAM mobility grades, the General Health Questionnaire (GHQ12) and three screening questions for Post Traumatic Stress Disorder (PTSD).

Results. Out of a 66% response rate, 52 (69%) patients felt that the period of primary prosthetic rehabilitation was adequate; 32 (54%) lower limb amputees graded themselves SIGAM C or D; 45 (60%) patients stated that they were still having significant stump pain. Significant stump pain was associated with poorer mobility. Nine (56%) upper limb amputees used their prosthetic limb in a functional way; 33 (44%) patients showed “psychiatric caseness” on the GHQ 12 and 50 (67%) had symptoms of PTSD.

Conclusions. Most patients felt that the period of physical rehabilitation had been adequate; those who did not were more likely to be having ongoing psychological problems. A high percentage of patients continue to have psychological problems and stump pain.     

Women's perception of changes in the social network after a spinal cord injury

Purpose. To describe how women with a spinal cord injury (SCI) perceived changes in the social network, and how these changes affected their ability to participate in occupation.

Method. Thirteen women, aged 25 to 61 years, with a SCI were interviewed twice. The interviews focused on their ability to participate in occupation, their relations with individuals within the social network, and changes in the social network following the SCI. The analysis was carried out using qualitative content analysis.

Results. The women described an emotional need for social support after the SCI to participate in occupation. This was a new experience that required time to adapt to. The women also described a need for practical social support from the social network members to manage meaningful occupation. After the SCI, the women had developed new habits through close cooperation with members in the social network. The women felt that they had become more responsible for the development of their relations. Many relations had improved after the SCI, while some had decreased. The women had also developed new relations with other persons with disabilities.

Conclusions. The women perceived substantial changes in the social network following the SCI, which in several ways affected their ability to participate in occupation. To adapt to their new life situation, the women gradually developed different strategies. The results point out the need to identify persons in the social network that women with SCI develop relations with, and integrate them in the rehabilitation process.     

Masculine role variables and outcomes among men with spinal cord injury

Purpose. Few studies have considered the impact of masculine role variables on outcome and adjustment to SCI among men. The present study examined the relations among SCI, views of masculinity, psychological adjustment, and rehabilitation outcomes among men with SCI.

Method. The sample included 20 men with SCI receiving inpatient rehabilitation, with a mean age of 45 years. Data included demographic variables as well as Conformity to Masculine Norms Inventory (CMNI), Gender Role Conflict Scale (GRCS), Functional Independence Measure (FIM), and Satisfaction with Life Scale ratings, and change in marital status.

Results. The findings revealed that satisfaction with life was positively related to scores on the CMNI Violence scale, FIM change from admission to discharge was positively related to the CMNI Emotional Control scale and negatively related to the CMNI Dominance scale. Change in marital status was inversely related to the CMNI Emotional Control and Primacy of Work scales and the GRCS Restricted Emotionality and Power, Success, and Competition scales.

Conclusions. The findings show that certain aspects of the traditional masculine role (i.e., ability to modulate strong emotions) may be adaptive in the rehabilitation process, whereas other aspects (i.e., a dominant interpersonal style) may present a barrier to effective rehabilitation.     

Disability in the upper extremity and quality of life in hand-arm vibration syndrome

Purpose. To investigate whether hand-arm vibration syndrome (HAVS) leads to disability in the upper extremity or deficit in quality of life (QoL) using validated questionnaire tools, and to establish whether these effects are related to the Stockholm Workshop Staging (SWS).

Method. This was a postal cross-sectional questionnaire study with a 50% response rate. Four hundred and forty-four males, who had been diagnosed and staged according to the SWS were sent the Disability in the Arm, Shoulder and Hand (DASH) and the SF-36v2 QoL questionnaires.

Results. HAVS cases had significantly greater DASH disability scores and reduced QoL physical and mental component scores compared to published normal values. Those HAVS cases with a presumptive diagnosis of Carpal Tunnel Syndrome (CTS) had even higher disability scores. There was a clear, linear relationship between both the DASH disability score and the physical component of the QoL and sensorineural SWS, but not with the vascular SWS.

Conclusions. HAVS has a significant effect on an individual's perceived ability to perform everyday tasks involving the upper extremity, and their quality of life. Physical capability may be further compromised in those individuals who have a presumptive diagnosis of CTS. These findings may have important implications regarding management of the affected worker.     

Health promotion needs of physically disabled individuals with lower limb amputation in Rwanda

Purpose. The objectives of the study were to identify the health-related behaviors among physically disabled individuals with lower limb amputation resident in Rwanda, the factors that influenced these behaviors, and the major issues that should be targeted in health promotion programs for physically disabled individuals with lower limb amputation.

Method. A cross-sectional survey, utilizing a self-administered questionnaire, was carried out among 334 lower limb amputees who volunteered to take part in the study. In addition, a sub-sample of 15 participants was purposively selected for in-depth face-to-face interviews.

Results. Many participants did not engage in physical exercises (64.7%). Others abused alcohol on daily basis (14.4%), smoked 11 - 20 cigarettes daily (13.2%), and used recreational drugs such as marijuana, opium and cocaine (9.6%). There were significant associations between the age group of the participants and participation in exercises (P = 0.001), and consuming alcohol, tobacco and recreational drugs (P = 0.001). In-depth interviews revealed factors influencing the behavior of participants.

Conclusions. Participants were found to be at risk of secondary complications because of poor lifestyle choices. There is a need to develop and promote wellness-enhancing behaviors in order to enhance the health status of physically disabled individuals in Rwanda who have lower limb amputations.     

Health, quality of life, social network and use of health care: a comparison between those granted and those not granted disability pensions

Purpose. The aim was to compare self-rated health, health-related quality of life (HRQoL), social networks and health care utilisation of those granted disability pension (DP) and those not granted disability pension (nDP).

Method. Demographic data and medical diagnoses were obtained from the records of the social insurance office. Data concerning self-reported health, HRQoL social networks, and use of health care were collected by a postal questionnaire. The nDP group included all those not granted full DPs between 1999 and 2000 (n = 99). The DP group were a random sample of those granted full DPs, during the same period (n = 197).

Results. The nDP group had more often multiple diagnoses, and lower self-reported health and HRQoL compared to those granted DP. In particular, their average scores were lower on the SF-36 scales social functioning, role limitations due to physical problems and mental health. The nDP group also had significantly smaller social networks.

Conclusions. Contrary to expectations, those not granted a disability pension do not seem to have better health, but rather to suffer from more sickness than those who were granted a disability pension.     

Increases in bone mineral density after functional electrical stimulation cycling exercises in spinal cord injured patients

Purpose. To assess the change in bone mineral density (BMD) after spinal cord injury (SCI) and to evaluate whether BMD loss can be reversed with the intervention of functional electric stimulation cycling exercises (FESCE).

Methods. Fifteen males with SCI were included. Fifteen able-bodied males were also tested to compare BMD. In the SCI group, the FESCE was performed for six months, and then was discontinued in the subsequent six months. BMD was performed before the FESCE, immediately after six months of the FESCE, and at the end of the subsequent six months.

Results. Before the FESCE, the BMD of the SCI subjects in every site, except the lumbar spine, was lower than that of the able-bodied subjects. After six months of FESCE, BMD of the distal femur (DF) and proximal tibia (PT) increased significantly, and BMD of the calcaneus (heel) showed a trend of increase. However, the BMD in the DF, PT, and heel decreased significantly after the subsequent six months without FESCE. The BMD of the femoral neck (FN) decreased progressively throughout the programme.

Conclusions. Our study showed site-specific BMD changes after FESCE. The BMD loss in the DF and PT was partially reversed after six months of FESCE, but the effect faded once the exercise was discontinued.     

Relationships between neuromuscular functioning, disability and pain in fibromyalgia

Purpose. Fibromyalgia (FM) is associated with pain and alterations in neuromuscular properties and function. A common belief is that these neuromuscular changes are a major cause of limitations in activities or restrictions in participation. The paper aims at examining the basis for such an understanding. Another aim is to investigate how pain is modified or is a modifier of neuromuscular properties and functions.

Method. Based on a simplified model to analyze the relationship between pain, neuromuscular properties and function, and activities/participation.

Results. It is argued that the changes in neuromuscular properties and functions seen in FM may simply be an adaptation to lowered physical activity level, rather than being a primary feature of the FM. Furthermore, it is shown that chronic pain and acute contraction-induced pain relates differently to functioning.

Conclusion. The analyses indicates that in clinical work and research it is important to distinguish between chronic pain and pain induced by physical activity. Furthermore, the deviations reported for FM in muscular properties and functions such as endurance and strength, are probably not reflecting pathology. Hence, physical activity and improvement of muscular functions are hardly sufficient as treatment of FM.     

Quality of life and maintenance of improvements after early multimodal rehabilitation: a 5-year follow-up

Purpose. There is a paucity of long-term evaluations on rehabilitation of musculoskeletal disorders, e.g., neck, shoulder or back pain. The aim of this study was to assess quality of life and the effect of early multimodal rehabilitation on 91 patients with musculoskeletal pain and disability at a 5-year follow-up.

Method. The follow-up assessment, which included questions on pain, function, quality of life, perceived health, sick leave and psychosomatic symptoms, was performed 5 years after the assessment of baseline status.

Results. Improvements in pain, perceived health and psychosomatic symptoms were maintained at the 5-year follow-up. In addition, improvements in function, quality of life, and level of acceptable pain were significant in comparison to baseline. At the time of the baseline assessment all patients were on sick leave (13% were on partial sick leave). At the 5-year follow-up, 58% of the patients were at work part or full time. The results show that those working differed significantly from those not working at the 5-year follow-up on almost all variables, indicating that those working enjoy better health. The most salient prognostic factors for return to work were perceived health and educational level at the time of the baseline evaluation.

Conclusions. These results show that treatment improved quality of life and the effects were basically maintained at 5 years. Work capacity as reflected in return to work increased greatly (81%) at a 1-year follow-up and was substantial (58%) at the 5-year follow-up. Moreover, perceived health and educational levels were important prognostic factors. Finally, the fact that patients working reported better health underscores the probable importance of return to work. Our results imply that it may be feasible to obtain long-term benefits from such a primary care-based intervention.     

Monitoring standing wheelchair use after spinal cord injury: a case report

Purpose: An important issue in spinal cord injury (SCI) research is whether standing can yield positive health benefits. However, quantifying dose of standing and establishing subject compliance with a standing protocol is difficult. This case report describes a method to monitor dose of standing outside the laboratory, describes the standing patterns of one subject, and describes this subject's satisfaction with the standing protocol.

Method: A man with T-10 complete paraplegia agreed to have his commercially available standing wheelchair instrumented with a custom-designed logging device for a 2-year period. The micro-controller-based logger, under custom software control, was mounted to the standing wheelchair. The logger recorded date, duration, angle of standing, and start/stop times.

Results: The client exceeded a suggested minimum dosage of standing per month (130.4% of goal), choosing to stand for short bouts (mean = 11.57 min) at an average angle of 61°, on an average 3.86 days per calendar week. He was generally very satisfied with the standing device and provided subjective reports of improved spasticity and bowel motility.

Conclusions: This case report describes a standing and surveillance system that allows quantification of standing dose. Future controlled studies are needed to evaluate whether standing can beneficially affect secondary complications after SCI.     

The QE Health Scale (QEHS): assessment of the clinical reliability and validity of a spiritually based holistic health measure

Purpose. To assess the clinical reliability and validity of a holistic health measure, the QE Health Scale (QEHS), for use with people with physical disabilities.

Method. A test-retest design saw the QEHS administered and compared with established measures of health at admission and discharge from three-week inpatient rehabilitation programmes. Data was analysed by factor and correlation analysis. Clinician-reported credibility and usefulness of the theoretical basis of the QEHS, the QEHS itself, and Patient Profiles derived from the QEHS were also used to evaluate clinical validity.

Results. The QEHS was judged to possess satisfactory reliability and validity.

Conclusion. The QEHS is a clinically reliable, valid, credible and useful holistic health instrument to facilitate client-centred therapeutic interventions, inform decision-making and evaluate outcomes for people with physical disabilities.     

The Papworth Early Rehabilitation Programme: vocational outcomes

Background. There are 2.7 million people in the UK receiving incapacity benefits, costing approximately £18 billion pa. Government has adopted a policy of helping claimants back into work, through structured vocational rehabilitation schemes. There are no published results of vocational rehabilitation services in the UK. We present the results of the Papworth Trust vocational rehabilitation programme. Depending on the severity of their disability, the 'Early Rehab Programme' aims to get people on incapacity benefits: (a) into employment, (b) fit for and seeking work, (c) involved in voluntary work, (d) education, or (e) able to live independently.

Methods. Retrospective chart survey and telephone follow up.

Setting. Cambridgeshire.

Results. Since 1995, 274 people attended for a preliminary interview, of which 107 subsequently started a full rehab programme. Eighty-seven were male and 20 female. Half had been unemployed for more than two years. Ninety-four completed the programme, of whom 53 had gained employment, 33 were 'work ready' and four were doing voluntary work. At long-term follow-up, 52 were employed, 12 were in voluntary work, and 7 had retired on medical grounds.

Conclusions. This programme demonstrates that long-term Incapacity Benefit recipients can return to sustained employment, as shown in those who participated in the Papworth Trust's vocational rehabilitation programme.     

Prevalence of pain in the head, back and feet in refugees previously exposed to torture: a ten-year follow-up study

Aim. To estimate change over 10 years concerning the prevalence of pain in the head, back and feet, among previously tortured refugees settled in Denmark, and to compare associations between methods of torture and prevalent pain at baseline and at 10-year follow-up.

Methods. 139 refugees previously exposed to torture in their home country were interviewed at a Danish rehabilitation clinic on average 8 years after their final release from confinement and re-interviewed 10 years later. Interviews focused on history of exposure to physical and mental torture and on pain in the head, back and feet prevalent at study.

Results. The mean number of times imprisoned was 2.5 and the mean cumulative duration of imprisonment 19.4 months. The most frequent physical torture method reported was beating (95.0%) and the main mental torture method deprivation (88.5%). Pain reported at follow-up was strongly associated with pain reported at baseline, and the prevalence of pain increased considerably (pain in the head, 47.5% at baseline and 58.3% at follow-up; back, 48.2% and 75.5%; feet, 23.7% and 63.3%). Predictor patterns at baseline and at follow-up had common traits, so that pain in the head and pain in the feet both were associated with the number of torture methods as well as specific methods, both at baseline and at follow-up. Pain in the back at baseline was associated with torture.

Conclusion. Two decades after the torture took place, increasing proportions of survivors seem to suffer from pain associated with the type and bodily focus of the torture. This presents a considerable challenge to future evidence-based development of effective treatment programs.     

Multiple joint pain and lower extremity disability in middle and old age

Purpose. To determine whether the extent of multiple-site lower extremity joint pain contributes to disability in middle and old age and describe patterns of severity in site-specific measures amongst those with multiple-site pain.

Method. Population-based, cross-sectional postal survey. Adults aged 50 years and over registered with three general practices and reporting pain lasting one month or longer in the previous year in at least one hip, knee, or foot were included. Respondents completed a generic measure of physical function and site-specific measures of severity for each relevant joint pain.

Results. Of 2429 eligible participants, 1801 reported multiple-site lower limb joint pain. Lower limb joint pain count was independently associated with reduced physical function after adjusting for a range of covariates. The severity of pain and disability attributed to each site increased as the number of painful sites increased.

Conclusion. Many older people with joint pain in the lower limb have more than one joint affected. Generic and site-specific measures of disability both show the same pattern of reduced physical function. Treatment targeted at a single joint may have only a marginal effect on reducing disability in individuals with multiple joint involvement unless treatment is also conferring benefit at other sites.     

REPAS, a summary rating scale for resistance to passive movement: item selection, reliability and validity

Purpose. To establish: (i) item characteristics and item selection for the REPAS; (ii) internal consistency, inter-rater and test-retest reliability of the final REPAS version and its subtests; (iii) the association between the REPAS and selected other clinical scales of impairment and activity limitation.

Method. Thirty-three neurological patients with central paresis. Two REPAS assessments with a one-week interval by two independent raters. Concurrent assessment of the Motricity Index, Box-and-Block test, Functional Ambulation Category, Timed walking, Barthel Index, Disability Rating Scale, Carer Burden Scale, and Hygiene Score.

Results. Twenty-six of 52 REPAS items fulfilled the item selection criteria. The final test version showed a high internal consistency, inter-rater and test-retest reliability (correlation coefficients: 0.87 - 0.97, no significant difference between raters or with test repetition). Reliability of the arm and leg subtests was substantial (correlation coefficients: arm subtest 0.63 - 0.98, leg subtest 0.56 - 0.96). REPAS scores were moderately associated with basic ADL competence and a carer's burden with arm or leg adductor spasticity. The REPAS, arm subtest scores, degree of arm paresis and gross manual dexterity showed a moderately high association.

Conclusions. The Ashworth scale-based guidelines assured comparability of test administration and scoring. The REPAS is a reliable and valid summary rating scale for resistance to passive movement.