Delays to accessing healthcare and rehabilitation following trauma in Madagascar - a qualitative study.

PURPOSE: To explore the factors affecting access to timely trauma care and rehabilitation in Madagascar. MATERIALS AND METHODS: A qualitative study based in the outpatient departments of two large rehabilitation centres. Semi-structured interviews and focus groups were conducted with 12 patients or family members and 11 healthcare professionals. Interviews and focus groups were conducted with a local interpreter and were audio-recorded and transcribed. The data were analysed deductively with thematic content analysis, utilising the Health Care Access Barriers model. RESULTS: Participants experienced delays in deciding to seek treatment, accessing healthcare facilities and in receiving appropriate treatment. Cognitive barriers included understanding and awareness of healthcare, structural barriers included distance and transportation to health facilities, financial barriers included affordability of healthcare and difficulty accessing funds. CONCLUSIONS: Delays to accessing healthcare may result in increased mortality and disability following trauma, as well as increased financial burden. Addressing the acceptability of services should be a focus for future service development, through training and education schemes. More importantly, improving both physical and financial accessibility of services must be a long-term priority. These findings may help to guide the ongoing development of trauma and rehabilitation pathways in Madagascar.IMPLICATIONS FOR REHABILITATIONDelays in accessing timely trauma care and rehabilitation can lead to complications such as pain, infection, malunion of fractures and loss of function, with devastating financial and social consequences for patients and their families.The acceptability of services is a key barrier to accessing hospital care and may be targeted through training schemes for healthcare professionals and education for the public.Improving the physical and financial accessibility of services in the long-term is paramount.Consideration should be given to these issues in the future development of co-ordinated trauma care and rehabilitation pathways in Madagascar.

Southern Hemisphere westerlies as a driver of the early deglacial atmospheric CO2 rise.

The early part of the last deglaciation is characterised by a ~40 ppm atmospheric CO2 rise occurring in two abrupt phases. The underlying mechanisms driving these increases remain a subject of intense debate. Here, we successfully reproduce changes in CO2, δ13C and Δ14C as recorded by paleo-records during Heinrich stadial 1 (HS1). We show that HS1 CO2 increase can be explained by enhanced Southern Ocean upwelling of carbon-rich Pacific deep and intermediate waters, resulting from intensified Southern Ocean convection and Southern Hemisphere (SH) westerlies. While enhanced Antarctic Bottom Water formation leads to a millennial CO2 outgassing, intensified SH westerlies induce a multi-decadal atmospheric CO2 rise. A strengthening of SH westerlies in a global eddy-permitting ocean model further supports a multi-decadal CO2 outgassing from the Southern Ocean. Our results highlight the crucial role of SH westerlies in the global climate and carbon cycle system with important implications for future climate projections.

Work in inflammatory and degenerative joint diseases.

This article focuses on work disability and sick leave and their cost; it also discusses the value of vocational rehabilitation programmes in rheumatic conditions such as rheumatoid arthritis, ankylosing spondylitis, hip and knee osteoarthritis. It acknowledges the importance of work not only for the worker who has one of these diseases but also for the public purse. Much can be done to improve the health of the persons and reduce their disability and its impact in the workplace which will have an important effect on their and their family's quality of life. It is important that neither rehabilitation nor vocational rehabilitation are regarded as bolt-on activities after drug treatment but are seen as an integral part of effective management. Publications dealing with return to work are relatively common in rheumatoid arthritis, less common in ankylosing spondylitis and relatively rare in osteoarthritis. Vocational rehabilitation programmes should aim to facilitate job retention or, failing that, to improve the ability to return to work. The process must be started with in the health arena and it has to be recognised that slow or poor practice in the health service can jeopardise the patient's work potential.

Vocational rehabilitation: a multidisciplinary intervention.

Vocational rehabilitation is by definition a multidisciplinary intervention in a process linked to the facilitation of return to work or to the prevention of loss of the work. Clinical staff in contact with a person who has lost his job (general practitioner, specialized physician) must promote vocational rehabilitation. Medical rehabilitation for those with disabilities, whether new or old, has to be followed without delay by vocational rehabilitation. It is even better if these two intertwined processes are overlapping. They involve many professionals including physiotherapists, occupational therapists, psychologists, vocational trainers, job counsellors, teachers, case-managers, job placement agencies. Vocational rehabilitation has a financial cost, borne by many state organizations (security, social system, social affairs) as well as by employers and private insurances, which are in case of accident, concerned by this process. However, the evidence suggests that this is recouped 2- to 10-fold as suggested by the British Society of Rehabilitation Medicine.

Living with thalidomide: health status and quality of life at 40 years.

Thalidomide was first synthesized in 1953 and was subsequently marketed as a mild hypnotic and sedative in more than 20 countries. By 2001 it was estimated that there were 5,000 survivors from the 10,000 - 12,000 babies who were, as a result, born with severe abnormalities. For these survivors, recent concerns have emerged about their physical state, in particular their levels of pain and their ability to maintain independence. It was therefore wished to ascertain health status and current concerns amongst a sample of survivors living in the UK. A combination of qualitative and quantitative methodologies was employed. Qualitative interviews were undertaken with a sample drawn from the population affected by thalidomide known to the Thalidomide Trust. Selection of participants was based upon a theoretical sample frame. Postal questionnaires to examine health status and various psychosocial aspects concerned with living with the consequences of thalidomide were sent subsequently to these same participants and to a random sample of those not originally drawn for the qualitative interviews. For the qualitative interviews, 28 agreed to take part; two refused and the remainder did not respond. Those agreeing to interview were representative of the original compensation bands (Chi-Square = 3.929; p = 0.416). Several themes emerged from these interviews, including the effects on work and career; coping in terms of attitude to life, self-image, confidence, self-esteem, stress and emotion; relationships, independent living issues and emergent problems such as pain, quality of life, and anxiety about the future. A postal questionnaire was then sent to those who had agreed to interview (28), plus a random sample of the remaining group who were not initially chosen for the qualitative interviews. In total 82 people were sent the questionnaire, of whom 41 (50%) responded. Two-thirds of responders were female. Seven out of ten lived with a partner, and over half (56%) had children. Almost half (46%) were in work, but 32% reported they were permanently unable to work because of disability. Current levels of impairment were found to be similar across groups defined by the original compensation band. In contrast, the activity limitation measures showed a steep gradient across bands but only 37% considered themselves disabled. Nevertheless, despite the restriction in activities for some, levels of participation were similar across bands; likewise simple summary items on health status and quality of life were similar and 70% reported their quality of life (QoL) was good or better than good. Yet nine in ten believed that their body was less flexible than in the past. Almost as many reported they were less able to carry things. It turns out that when compensation bands were grouped (1 - 3, 4 - 5) to highlight those most severely affected according to the original assessment, then those in the higher band grouping reported significantly more musculoskeletal problems, high levels of fatigue and increasing dependency and feelings of vulnerability. It is clear that the original ranking of disability severity, as expressed through the compensation, bands (allocated in early childhood in most cases), is consistent with current ranking of limitations in activity and participation. Nevertheless, despite high levels of disability amongst some survivors, lifelong adjustments to the original impairments have resulted in more than two thirds reporting at least a good quality of life. However, survivors expressed increasing concern about emerging musculoskeletal and other problems which may compromise hard-won independence.

The needs of young people with disabilities in transition from paediatric to adult services.

Transition to adulthood requires consolidation of identity, achievement of independence establishment of adult relationships and finding vocation. Those with disabilities and health problems experience difficulty in this through lack of social opportunity. There are 340,000 affected UK individuals of 16-29 years. Most, having survived childhood disability, may experience later deterioration in functional level. Most will require long term monitoring. Health needs include treatment for the complications and progression of their condition, appropriate treatment for everyday, and unrelated diseases, and health maintenance knowledge. Leaving a cohesive paediatric service and entering the uncoordinated adult health services has been described as hurtling into a void''. Therefore, number of health service models have been proposed, including the person-focussed model, a disease-focussed model, a hospital-based model, a team-based outside the health service, a named person, a voluntary organisation and a primary care model. For those with complex disabilities an interdisciplinary team comprising a consultant in Rehabilitation Medicine, (who will facilitate referral to other medical consultants) occupational therapy, speech therapy, psychology and social work input with support from physiotherapy and nursing addresses all these needs. Young Adult Teams can both teach skills, and facilitate health and other service usage. This whole area of work is under-researched. The outcomes for disabling childhood conditions must be investigated, and planning for adulthood must influence the pattern of care in childhood. The most urgent need is to set up effective services for young adults, which will help to ensure that their 50 years of adulthood have quality of life.

The Behcet's disease activity index.

OBJECTIVE: To identify a subset of clinical features of Behçet's disease (BD) that can be summated to form an overall index of disease activity appropriate for clinical and research use internationally. METHODS: Completed Behçet's Disease Current Activity Forms were collected from a total of 524 patients with BD from five countries. The data from 14 questions on the form were subjected to Rasch analysis to establish whether these items form a hierarchical and unidimensional scale of disease activity, both within and between countries. RESULTS: The data showed a good fit to the Rasch model within three countries using a dichotomous scoring function. However, when the data from these three countries were pooled, the fit to the model was poor. Cross-cultural differential item functioning (DIF) was found in seven items in the pooled data. When the items with DIF by country were separated and two items were removed, the resulting 26-item scale showed a good fit to the Rasch model. CONCLUSIONS: Within Turkey, Korea and the UK, the 14 items can be summated to give an index of disease activity. Analysis of the pooled data confirmed that the index is not suitable for comparison between countries or for pooling of data in the raw form, but after fitting the data to the Rasch model such comparisons can be made. This gives a scaling tool that is quick and easy to use in the clinical situation.

Prevalence of pressure sores in a community sample of spinal injury patients.

OBJECTIVES: To estimate the point prevalence of pressure sores in a community sample of spinal cord injured patients who were followed up by a spinal injuries unit and to evaluate whether self-management strategies were associated with decreased risk of pressure sores. SETTING: A regional spinal injuries unit, UK. DESIGN: Postal questionnaire survey. MAIN OUTCOME MEASURE: Presence of pressure sores. SUBJECTS: All patients who were being followed up on a regular basis by the unit. RESULTS: Out of 760, 520 replied to the questionnaire; 472 were eligible for analysis. Point prevalence of pressure sores was 23% (99). Failure to inspect the skin daily for pressure damage was associated with decreased prevalence of pressure sores (odds ratio (OR) 0.5; 95% confidence interval (CI) 0.2-0.83). Those who inspected their skin daily, however, had a higher proportion of stage I pressure sores, but this was not statistically significant. Smoking (OR 1.8; 95% CI 1-3.3) and pre-existing medical problems (OR 1.8; 95% CI 1-3) were associated with increased prevalence of pressure sores. Regular lifting of weight at least once in an hour while seated, age, gender, neurological level, employment status, living alone and faecal and urinary incontinence were not significant predictors of pressure sores. CONCLUSIONS: Nearly one-quarter of participants had pressure sores at the time of the survey. Periodic weight lifts and daily inspection of skin for pressure damage were not associated with decreased prevalence of pressure sores in this sample. However, those who inspected skin daily tended to detect pressure damage early.

Development of the ASQoL: a quality of life instrument specific to ankylosing spondylitis.

BACKGROUND: Although disease-specific health status measures are available for ankylosing spondylitis (AS), no instrument exists for assessing quality of life (QoL) in the condition. OBJECTIVE: To produce an AS-specific QoL measure that would be relevant and acceptable to respondents, valid, and reliable. METHODS: The ASQoL employs the needs-based model of QoL and was developed in parallel in the UK and the Netherlands (NL). Content was derived from interviews with patients in each country. Face and content validity were assessed through patient field test interviews (UK and NL). A postal survey in the UK produced a more efficient version of the ASQoL, which was tested for scaling properties, reliability, internal consistency, and validity in a further postal survey in each country. RESULTS: A 41 item questionnaire was derived from interview transcripts. Field testing interviews confirmed acceptability. Rasch analysis of data from the first survey (n=121) produced a 26 item questionnaire. Rasch analysis of data from the second survey (UK: n=164; NL: n=154) showed some item misfit, but showed that items formed a hierarchical order and were stable over time. Problematic items were removed giving an 18 item scale. Both language versions had excellent internal consistency (alpha=0.89-0.91), test-retest reliability (r(s)=0.92 UK and r(s)=0.91 NL), and validity. CONCLUSIONS: The ASQoL provides a valuable tool for assessing the impact of interventions for AS and for evaluating models of service delivery. It is well accepted by patients, taking about four minutes to complete, and has excellent scaling and psychometric properties.

Team approach versus ad hoc health services for young people with physical disabilities: a retrospective cohort study.

BACKGROUND: Young people with physical disabilities often have difficulty attaining independence in adult life and consequently need lifelong support from parents and from health-care and social-care services. There are concerns about the organisation and cost-effectiveness of such services and their ability to meet the independence training and serious health needs of these young people. Our aim was to compare a young adult team (YAT) approach with the ad hoc service approach in four locations in England, in terms of their ability to enhance the participation in society of these young people and their cost. METHODS: We did a retrospective cohort study, in which we interviewed 254 physically disabled young people. 124 healthy controls were given a questionnaire. We interviewed with standardised measures and used logistic regression analysis to test for effects of ad hoc and YAT services. The Mantel-Haenszel chi2 statistic was used to test for differences in resource use between areas in which the YAT and ad hoc services were available. FINDINGS: The absence of pain, fatigue, and stress increased the odds of participation two-fold to four-fold. After adjustment for these factors, young people cared for by multidisciplinary YAT teams were 2.54 times (95% CI 1.30-4.98) more likely than those who used ad hoc services to participate in society. Resource use did not differ between the two service types. INTERPRETATION: A YAT approach costs no more to implement than an ad hoc approach, and is more likely to enhance participation in society of young people with physical disabilities.

Do rheumatologists recognize their patients' work-related problems?

OBJECTIVE: The question addressed in this pilot study was 'Does the addition of an occupational health physiotherapist offering early vocational assessment influence the management of rheumatology patients (clinically and related to the workplace)?' METHOD: Sequential vocational assessments were offered to 78 subjects with rheumatological complaints of more than 1 yr duration experiencing difficulties in working. The findings from the vocational assessments were fed back to rheumatologists. Where necessary and acceptable, workplace interventions were made and the Employment Service's Access to Work scheme was utilized to address the employment problems found. RESULTS: The intervention vocational assessments trebled the number of subjects seeing a Disability Employment Adviser (17% before the study, a further 37% during it). High levels of satisfaction were reported for interventions made at work. Some important changes to the management of some patients by a few doctors were made, but information from the vocational assessments did not reach them reliably in a number of cases. CONCLUSION: An unmet need for advice and workplace aids and equipment was identified. Vocational assessment by a practitioner with clinical knowledge, ergonomic and workplace experience proved helpful to patients in this pilot study. Without vocational assessment, the hospital-based team rarely identified what were often remediable, work problems and appeared unaware of the appropriate referral route for this group of patients. Rheumatologists may need to expand their management to include consideration of work issues to ensure that their patients are referred early for appropriate ergonomic intervention when required. Further study is required to help facilitate easy identification in the clinical setting of patients with problems at work.

Measuring the function of children with juvenile arthritis.

OBJECTIVE: Juvenile idiopathic arthritis (JIA) can affect a child's performance across a range of activities necessary to normal childhood development. Although there are now several available measures of disability in JIA, none have been validated for use with children in the UK. Consequently, a study was undertaken to compare and validate four such measures, together with a locally developed function test. METHODS: Fifty-three children between the ages of 5 and 16 yr were recruited into the study. The mean age was 10.4 yr and mean duration of disease 4 yr. Seventy per cent were female. RESULTS: Internal consistency was adequate in three of five measures. Four of five measures showed the expected associations between disease activity and function (P<0.05). The level of reliability was poor for tests that involved direct assessment by therapists. Most showed poor levels of unidimensionality. CONCLUSION: Until new measures become available, the CHAQ appears to be the current 'best buy' for measuring function in children with arthritis.

Factors determining participation in young adults with a physical disability: a pilot study.

OBJECTIVES: To evaluate in a pilot study the usefulness of measures of health and psychosocial status for use with young people with physical and complex disability. Also to test empirically a conceptual model of the factors determining key outcomes in young disabled adults, in particular, participation (handicap). DESIGN: A cross-sectional study involving face-to-face interviews with young adults aged 16-28 years (n = 45) with physical and complex disabilities. A group of nondisabled college students completed the same set of questions to provide normative scores for some psychosocial measures. SETTING: Young people with physical disabilities were recruited from the area of North and North East Lincolnshire, and nondisabled young people from the Leeds area. METHODS: Standardized measures of impairment, disability and handicap, together with various psychosocial scales were incorporated into a structured face-to-face interview. Standardized measures included the Nottingham Health Profile (NHP), the Barthel Index, the London Handicap Scale, Rosenberg's Self-esteem Scale and the Proactive Scale. RESULTS: Regression analysis showed the most important predictors of participation were energy and pain (NHP), disability (Barthel) and self-efficacy. Most of the health status measures were able to discriminate between disabled and nondisabled young people, but some measures lacked face validity for the 'nonwalking' disabled group. CONCLUSIONS: Both health status and psychosocial factors were found to impact on the participation of young people. Impairment and disability however, did not impact adversely on self-ratings of health or quality of life and it is clear from these results that having a disability may limit participation, but is not necessarily synonymous with a poorer quality of life.