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.     

Health of people with spinal cord injury in Singapore: implications for rehabilitation planning and implementation

Purpose.?This study aimed to provide a broad overview of the health of people with spinal cord injury (SCI) in Singapore, so as to highlight areas of potential need. These areas could then guide future research and rehabilitation programme development.

Methods.?Demographic data, injury information and information about SCI-related secondary impairments, chronic conditions and their associated risk factors, medical and hospital utilisation, participation (Craig Handicap Assessment and Reporting Technique) and life satisfaction (Satisfaction with Life Scale) were collected via interviews from people living with traumatic SCI.

Results.?On average, participants (50 men and 5 women) were aged 48.3 ± 16.54 years and had had their SCIs for 5 years. ?75%% with tetraplegia. The most prevalent SCI-related secondary impairments were pain, spasms, bladder problems, bowel problems and oedema. Chronic conditions and their associated risk factors were prevalent. Participation and life satisfaction scores were lower than those reported for similar populations cross-culturally.

Conclusion.?The study revealed several health areas that may be affecting the overall health of people with SCI in Singapore. By focusing on community reintegration and health promotion, physiotherapists and other rehabilitation professionals may augment health outcomes and improve the quality of life of this population in Singapore.     

Modeling social reintegration in persons with spinal cord injury

Purpose: This study was undertaken to identify and develop a model of the factors related to social reintegration in persons with spinal cord injury (SCI).

Method: A convenience sample of 145 persons with SCI living in two cities in South Korea anonymously completed a questionnaire that comprised the assessment of social reintegration, a tool developed to measure the degree of adjustment to community living in persons with SCI. Structural equation modeling was used to examine the direct and indirect effects of self-esteem, social barriers, physical function, family support, informational support, perceived stress, emotion-focused coping (EFC), and problem-focused coping (PFC) on social reintegration.

Results: The model explained 65% of the variance in social reintegration in persons with SCI. The results indicated that the social reintegration of persons with SCI was influenced most by EFC. Family support, informational support, perceived stress and social barriers were also significantly related to social reintegration.

Conclusions: These findings suggest implications for developing the interventions at various levels including family and community and specific to individual coping strategies to enhance social reintegration in persons with SCI.     

The ‘risk inventory for persons with spinal cord injury’: Development and preliminary validation of a risk assessment tool for spinal cord injury

Purpose.?To present a new short instrument to measure perceived risks of common everyday activities engaged in by persons with spinal cord injury (SCI), and to provide preliminary data on its psychometric properties.

Method.?Community-dwelling men and women with SCI (N?=?139) in metropolitan Detroit completed the risk inventory for persons with spinal cord injury (RISCI). They also answered a risk-taking identity question (‘Are you a risk-taker’?) and completed the risk orientation questionnaire (ROQ) (Rohrmann, http://www.rohrmannresearch.net/, 2008), a risk propensity measure.

Results.?All items of the RISCI correlated positively with each other and the total score; internal reliability as measured by Cronbach's α was 0.86. Principal components factor analysis confirmed a one-factor structure which explained 41% of the variance. A three-factor solution with readily interpretable factors explained 64% of the variance. Content validity was established through extensive consultations with persons with SCI in the development of the measure. Discriminant validity was supported by the ability of the RISCI to distinguish between subsamples (for example, between men and women, those with paraplegia and tetraplegia) for whom differences in risk assessment might be expected. Criterion validity was supported by significant relationships in the expected directions between the RISCI and risk-taking identity and between the RISCI and the ROQ.

Conclusions.?Findings suggest that the RISCI is a brief, easy to administer and psychometrically sound measure of perceived risk of activities common in daily life for use with persons with SCI.     

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.     

Using everyday technology to compensate for difficulties in task performance in daily life: experiences in persons with acquired brain injury and their significant others

Purpose.?The purpose of this study is to illuminate how persons with acquired brain injury (ABI) and their significant others experienced individualised occupation-based interventions using commonly available everyday technology (ET) to compensate for perceived difficulties with performance of tasks in daily life.

Method.?Qualitative research interviews were conducted with 10 persons with ABI and with one of their significant others. The data were analysed according to qualitative content analysis.

Results.?The persons with ABI experienced that they mastered their lives in a better way by the compensatory use of ET. They became capable of doing tasks independently and experienced themselves as being a new person. During the intervention process, persons with ABI became aware of the compensatory potential of familiar ET, and they were supported to use effective compensatory strategies and incorporate them into their habits. Their significant others felt a relief in daily life, and their mood was positively affected as they experienced reduced responsibility and need of control.

Conclusions.?This qualitative study has shown that persons with ABI, as well as their significant others, experienced a multitude of benefits from occupation-based interventions using commonly available ET to compensate for their difficulties in the performance of tasks in daily life and that the goals achieved affected their overall contentment with life.     

Secondary health conditions in persons with a spinal cord injury for at least 10 years: design of a comprehensive long-term cross-sectional study

Purpose: To describe the prevalence of secondary health conditions (SHCs) (urinary tract and bowel problems, pressure ulcers, spasticity, musculoskeletal and neuropathic pain, sexual dysfunction, respiratory and cardiovascular disorders) in persons with long-term spinal cord injury (SCI), and to explore the impact of SHCs on fitness, active lifestyle, participation and well-being. Methods: A time since injury (TSI)-stratified cross-sectional study among 300 persons between 28- and 65-year-old with a SCI for at least 10 years. Strata of TSI are 10–19, 20–29, and 30 or more years. All eight Dutch rehabilitation centres with a SCI unit will participate. Participants will be invited for a 1-day visit to the rehabilitation centre for an aftercare check-up by the local SCI rehabilitation physician (neurological impairment, SHCs and management), physical tests by a trained research assistant (lung function, wheelchair skills, physical capacity), and they will be asked to complete a self-report questionnaire in advance. Results: Not applicable. Conclusion: This study will provide knowledge on the health status and functioning of persons aging with SCI living in the Netherlands. This knowledge will help us to develop predictive models for the occurrence of SHCs and to formulate guidelines to improve health care for persons with long-term SCI.

Implications for Rehabilitation

• Persons with long-term spinal cord injury may be susceptible to many types of secondary health conditions (i.e. pressure ulcers, urinary tract infections, pain and spasticity).

• Coordinated long-term health care is required for this population but this is currently not operational in all specialized rehabilitation centres in the Netherlands.

• This study aims to develop predictive models for the occurrence of secondary health conditions and to develop guidelines to improve long-term health care for persons living with a spinal cord injury in the Netherlands.

     

Evaluation of change in fatigue,self-efficacy and health-related quality of life,after a group educational intervention programme for persons with neuromuscular diseases or multiple sclerosis: a pilot study

Purpose.?An intervention for persons with neuromuscular diseases (NMD) or multiple sclerosis (MS) who experienced severe fatigue was developed which aimed at educating participants in maintaining a balance between capacity and load in their daily activities. This pilot study evaluated the results of this intervention.

Methods.?Persons with NMD or MS who experienced severe fatigue were included. Outcome measures were: fatigue (Fatigue Severity Scale), health-related quality of life (HRQoL; SF-36) and self-efficacy (ALCOS-16). Changes in scores between the start of the intervention (T0) and 3 months post-intervention (T1) were tested with the Wilcoxon tests in the complete group and in subgroups (gender, education, high/low self-efficacy).

Results.?Forty-three persons participated. Significant improvements of HRQoL were found for the domains role-physical, mental health and general health perceptions. Subgroup analyses showed more improvement in males (fatigue, role-physical, vitality, bodily pain, general health perceptions), participants with lower education (role-physical, vitality) and participants with low self-efficacy at T0 (self-efficacy, mental health, general health perceptions) than in females, participants with higher education and participants with higher initial self-efficacy.

Conclusion.?This pilot-study provides preliminary evidence for the effectiveness of a group educational intervention in improving HRQoL without increasing fatigue in persons with NMD and MS.     

Spinal cord injury rehabilitation research: patient priorities,current deficiencies and potential directions

Purpose.?To highlight research priorities of people with spinal cord injury (SCI), outline the current state of rehabilitation research and suggest potentially fruitful avenues for future inquiry.

Method.?Commentary.

Results.?People with SCI identify pain, depression, fatigue, pressure sores, spasticity and the management of bladder and bowel as research priorities. Research reveals multiple interconnections between these secondary problems, all of which negatively impact quality of life (QOL). However, despite a substantial volume of existing research, significant gaps in knowledge remain, duplications of research effort are apparent and few interventions have an adequate evidence base. Issues concerning community participation – another research priority – have only recently attracted researchers' attention.

Conclusions.?This commentary contends that research should: focus on issues and outcomes of relevance and importance to people living with SCI; address the complexities of secondary conditions and their inter-relationships; appraise environmental barriers to participation in meaningful living; be designed to identify and inform effective and relevant interventions. Innovative approaches to research partnerships, mixed methods and exploring variables usually omitted from quantitative studies might enhance the likelihood that the complexity of issues facing people living with SCI will be identified and addressed. Moreover, a governing focus on achieving lives experienced as hopeful, purposeful, satisfying and meaningful could contribute to enhancing QOL outcomes following SCI.     

Employment of persons with spinal cord lesions injured more than 20 years ago

Purpose.?The primary objective was to study factors influencing post-injury employment and withdrawal from work in persons who sustained traumatic spinal cord injury (SCI) more than 20 years ago. A secondary objective was to study life satisfaction in the same patients.

Method.?A cross-sectional study with retrospective data of 165 SCI-patients admitted to Sunnaas Rehabilitation Hospital 1961–1982. Multiple logistic regression was used to identify predictors for obtaining work post-injury. A Cox proportional hazards regression model was used to study factors influencing early withdrawal from work, i.e. time from injury until discontinuing employment.

Results.?Sixty-five percent of the participants were employed at some point after the injury. Thirty-five percent still had work at the time of the survey. The odds of obtaining work after injury were higher in persons of younger age at injury, higher in males versus females, higher for persons with paraplegia versus tetraplegia, and for persons classified as Frankel D-E compared to a more severe SCI. Factors associated with shorter time from injury until discontinuing employment were higher age at injury, incidence of injury after 1975 versus before, and a history of pre-injury medical condition(s). Life satisfaction was better for currently employed participants.

Conclusion.?The study indicates a low employment-rate in persons with SCI, even several years after injury. From the results, we suggest more support, especially to persons of older age at injury and/or with a history of pre-injury medical condition(s), to help them to obtain work and sustain employed for more years after injury.     

Chronic spinal cord injury pain: pharmacological and non-pharmacological treatments and treatment effectiveness

Purpose.?To describe pharmacological and non-pharmacological pain treatments used for chronic spinal cord injury pain (CSCIP) and current treatment effectiveness in a large Dutch population with a spinal cord injury (SCI).

Method.?Postal survey among 575 persons with SCI. The main outcome measures were the pain intensity score of the Chronic Pain Grade questionnaire, past and current pain treatments, and perceived effectiveness of current pain treatments.

Results.?Response rate was 49% (279 persons) and 215 respondents (77.1%) had CSCIP. Most respondents with CSCIP (62.8%) reported more than one pain type, of which neuropathic pain was most frequently reported (69.3%). Of this group with CSCIP, 63.8% was currently involved in some kind of treatment, but nevertheless high levels of pain (mean 52.8 on a 0–100 scale) were reported. Massage (therapy)/relaxation (training), anticonvulsants, and non-steroidal anti-inflammatory drugs (NSAIDs) were the most often used treatments. The current treatments that were most often perceived as effective were acupuncture/magnetising, cannabis/alcohol, physiotherapy and exercise, and massage (therapy)/relaxation (training). TENS/ultrasound and antidepressants were least often perceived as effective.

Conclusions.?Many SCI pain treatments have been tried. Acupuncture/magnetising, cannabis/alcohol, and physiotherapy and exercise were considered most effective. Further research is needed to establish effective SCI pain treatments.     

Multidisciplinary cognitive behavioural pain management programmes for people with a spinal cord injury: design and implementation

Purpose.?This article seeks to outline the design and implementation of cognitive behavioural pain management programmes (PMPs) for people with spinal cord injury (SCI), illustrated by the experiences in a recently evaluated programme (SpinalADAPT). It is hoped that this will provide an easily accessible account of the relevant design and implementation issues for those who seek to deliver such programmes to persons with a SCI.

Methods.?A collaborative team of pain and SCI professionals developed a modified version of a standard cognitive behavioural pain management programme (ADAPT) based upon experiences of those with SCI who had previously attempted ADAPT. A number of structural and content elements of the programme were identified that required modification in order to accommodate the particular needs of those with SCI.

Results.?The modified programme was subsequently successfully delivered by a combination of SCI and pain health professionals. Three groups of individuals completed the SpinalADAPT, and an evaluation of outcomes compared to standard care are reported elsewhere (Nicholson Perry et al., Clin J Pain 2010;26:206–216).

Conclusions.?It appears feasible to appropriately modify standard PMPs for participants with SCI, and that such programmes may offer benefits in terms of improved quality of life. Further revision and evaluation of such programmes is required.     

A population-based study of demographical variables and ability to perform activities of daily living in adults with osteogenesis imperfecta

Purposes.?To describe demographical variables, and to study functional ability to perform activities of daily life in adults with osteogenesis imperfecta (OI).

Methods.?Population-based study. Ninety-seven patients aged 25 years and older, 41 men and 56 women, were included. For the demographical variables, comparison was made to a matched control-group (475 persons) from the Norwegian general population. Structured interviews concerning social conditions, employment and educational issues and clinical examination were performed. The Sunnaas Activities of Daily Living (ADL) Index was used to assess the ability to perform ADL.

Results.?The prevalence of clinical manifestations according to Sillence was in accordance with other studies. Demographical variables showed that most adults with OI are married and have children. They had a higher educational level than the control group, but the employment rate was significantly lower. However, the rate of employed men was similar in both groups. Adult persons with OI achieved a high score when tested for ADL.

Conclusions.?Adults with OI are well educated compared with the general population, and most of them are employed. High scores when tested for ADL indicate that most of them are able to live their lives independently, even though there are some differences according to the severity of the disorder.     

A qualitative study on the use of personal information technology by persons with spinal cord injury

Abstract

Purpose: Previous work has shown that information technology (IT), such as personal computers and other digital devices (e.g. tablets, laptops, etc.), software, online resources and hand-held communication tools (e.g. cellphones), has benefits for health and well-being for persons with chronic health conditions. To date, the ways that persons with spinal cord injury (SCI) use IT in their daily activities has not been fully explored. Thus, the purpose of the study was to obtain an in-depth perspective of how people with SCI regularly use IT to gain insight on ways IT can be used to support health and well-being in the community for this population. Methods: Semi-structured interviews were conducted with community-dwelling persons with SCI (N?=?10) who identified themselves as frequent-or-daily-users of IT. Qualitative content analysis was used to identify the ways that persons with SCI use personal IT. Results: Ten themes related to IT use were identified: (1) Modifications allowing access to IT; (2) Convenience of IT and its perceived value; (3) IT as a scheduler/planner; (4) Challenges; (5) Contributions of IT to participation; (6) Access to information; (7) Influence of IT on well-being; (8) IT as a connector; (9) Issues of IT acquisition; and (10) Desires for future devices/technology. Conclusions: The findings suggest that IT use by people with SCI contributes to general health and well-being, by increasing access to SCI-related health information and opportunity for social participation. Despite the benefits offered by IT, persons with SCI have identified a degree of skepticism about the reliability and applicability of the health information they find online. Future work on developing and implementing IT for health and well-being post-SCI should take into account consumers' perspectives to facilitate uptake.

• Implications for Rehabilitation

• There is a need for a more refined understanding of how people with spinal cord injury (SCI) use information technology (IT) in their daily lives in order to understand how IT can support health and well-being post-injury in the community.

• IT use holds implications for the physical and mental well-being of persons with SCI. IT allows access to a variety of information, and facilitates participation in the community.

• The enthusiasm for the use of IT is tempered by a degree of skepticism about the reliability and applicability of the health information available online. This highlights the need to raise awareness of existing sources vetted for this population, and to develop content that meets the particular health needs for SCI.

     

Urinary incontinence in a community sample of older adults: prevalence and impact on quality of life

Purpose.?To measure the prevalence of urinary incontinence (UI) in a community-dwelling sample and the impact of self-reported UI on well-being and activity in older men and women.

Method.?Participants were older adults aged ≥65 years. Measures included the frequency of urgency incontinence, depression, positive and negative affect and social activity, independence in activities of daily living (IADL) and self-rated health. The data were collected by face to face interview (1994) and computer assisted telephone interviews (1996).

Results.?Of the 796 participants, 28%% experienced urgency incontinence and 21%% reported stress incontinence occasionally or often, with higher rates among women. The threshold for the impact on depression, negative affect and IADL was with occasional occurrence of urinary urgency incontinence. For positive affect and self-rated health, the threshold was experiencing urinary urgency incontinence often. The presence of urinary stress incontinence was associated with depression, IADL dependence, self-rated health and positive affect. Overall, women with incontinence had higher negative affect scores, but men with stress incontinence had higher scores than those without.

Conclusions.?The impact of incontinence highlights the need for more effective management of the condition. The threshold for the effects of urinary urgency incontinence on mental health and functionality is lower than for the effects on general health. There is a need to consider how older people judge the impact of UI in the design of targeted health promotion programmes.     

Long term outcomes after moderate to severe traumatic brain injury

Objective:?This research examined the long-term outcomes of rehabilitation patients with moderate to severe traumatic brain injury (TBI).

Design:?Retrospective cohort study.

Setting and subjects:?We examined consecutive records of persons with moderate to severe traumatic brain injury who were discharged from a large rehabilitation hospital in Pennsylvania from 1973 to 1989. We interviewed consenting participants (n?=?306) up to 24 years post-injury.

Main outcome measures:?Self-rated health, activity limitations, employment, living arrangements, marital status, Community Integration Questionnaire, and use of rehabilitation services.

Results:?Participants were most limited in activities such as managing money and shopping. Twenty-nine per cent of our participants were working full time. There were significant relationships between activity limitations and residual cognitive impairment at follow-up. Self-rated health was correlated with most instrumental activities of daily living.

Conclusion:?Our findings document health and function in a large post acute TBI population and implications for rehabilitation are discussed.     

To regain participation in occupations through human encounters – narratives from women with spinal cord injury

Purpose. To gain an understanding of how women with spinal cord injury (SCI) experienced human encounters in occupations and how these influenced their participation.

Method. The data were collected through two or three in-depth interviews with 13 women (age 25 – 61 years) with SCI. Data analysis was carried out by using a paradigmatic analysis of narrative data, followed by an interpretation based on a narrative theory.

Results. The results showed a complexity where the women's experiences and acting in human encounters changed over time. In these human encounters the women struggled with conflicts, supported other persons that were insecure and revaluated their apprehension about persons in their social network. These multidimensional human encounters thereby enabled them to regain participation in occupations.

Conclusions. This shows that human encounters are important for persons with disabilities so they can restructure their occupational identity and their needs for participation in occupations. The study also showed that the use of narratives as a tool within rehabilitation could lead to an increased understanding of the subjective changes that occur over time for a person with a disability.     

Participation of the elderly after vision loss

Purpose.?To assess the degree of participation of the visually impaired elderly and to make a comparison with population-based reference data.

Method.?This cross-sectional study included visually impaired elderly persons (≥55 years; n?=?173) who were referred to a low-vision rehabilitation centre. Based on the International Classification of Functioning, Disability and Health (ICF) participation in: (1) domestic life, (2) interpersonal interactions and relationships, (3) major life areas, and (4) community, social and civic life was assessed by means of telephone interviews. In addition, we assessed perceived participation restrictions.

Results.?Comparison with reference data of the elderly showed that visually impaired elderly persons participated less in heavy household activities, recreational activities and sports activities. No differences were found for the interpersonal interactions and relationships domain. Participants experienced restrictions in household activities (84%), socializing (53%), paid or voluntary work (92%), and leisure activities (88%).

Conclusions.?Visually impaired elderly persons participate in society, but they participate less than their peers. They experience restrictions as a result of vision loss. These findings are relevant, since participation is an indicator for successful aging and has a positive influence on health and subjective well-being.