Colin Chandler

Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation

We reviewed the notes of 197 patients with Duchenne muscular dystrophy whose treatment was managed at the Newcastle muscle centre from 1967 to 2002, to determine whether survival has improved over the decades and whether the impact of nocturnal ventilation altered the pattern of survival. Patients were grouped according to the decade of death and whether or not they were ventilated. Kaplan Meier survival analyses showed significant decade on decade improvement in survival. Mean age of death in the 1960s was 14.4 years, whereas for those ventilated since 1990 it was 25.3 years. Cardiomyopathy significantly shortened life expectancy from 19 years to a mean age of 16.9 years. Better coordinated care probably improved the chances of survival to 25 years from 0% in the 1960s to 4% in the 1970s and 12% in the 1980s, but the impact of nocturnal ventilation has further improved this chance to 53% for those ventilated since 1990.

Preconception Counseling in Women With Diabetes A population-based study in the North of England

OBJECTIVE To investigate the association of preconception counseling with markers of care and maternal characteristics in women with pregestational diabetes. RESEARCH DESIGN AND METHODS The study includes data from a regional multi-center survey on 588 women with pregestational diabetes who delivered a singleton pregnancy between 2001 and 2004. Logistic regression was used to obtain crude and adjusted estimates of association. RESULTS Preconception counseling was associated with better glycemic control 3 months preconception (odds ratio 1.91, 95% CI 1.10–3.04) and in the first trimester (2.05, 1.39–3.03), higher preconception folic acid intake (4.88, 3.26–7.30), and reduced risk of adverse pregnancy outcome (P = 0.027). Uptake of preconception counseling was positively associated with type 1 diabetes (1.87, 1.14–3.07) and White British ethnicity (2.56, 1.17–5.6) and negatively with deprivation score (0.78, 0.70–0.87). CONCLUSIONS Efforts are needed to improve preconception counseling rates. Uptake is associated with maternal sociodemographic characteristics.

Effects of hippotherapy on people with cerebral palsy from the users’ perspective: A qualitative study

Although there is now some evidence for specific effects of hippotherapy on people with cerebral palsy, these studies fail to provide a comprehensive picture of the effects of hippotherapy. This was the first qualitative study to explore the hippotherapy experience of people with cerebral palsy from a user perspective. The effects of hippotherapy and their context were of particular interest. Seventeen users aged from 4 to 63, with or without their parents, participated in focus groups or individual interviews in six centres in Britain and in Germany. The main effects of hippotherapy, as identified by users and parents, are normalisation of muscle tone, improved trunk control, improved walking ability, carryover effects of hippotherapy to activities of daily living, and increased self-efficacy, confidence, and self-esteem. This study provided unique and new insights into the context in which hippotherapy happens, as well as its effects on impairment, activity, participation, and quality of life in people with cerebral palsy. The studys findings are integrated with the existing literature on motor learning and pedagogy to try to explain the complex effects of hippotherapy as reported by users and parents. A conceptual framework that illustrates these effects and their interactions is introduced.

Sustaining employment after vocational rehabilitation in acquired brain injury

Purpose. To explore factors affecting sustaining employment in people with acquired brain injury (ABI). Method. A multiple case study approach using semi-structured interviews in eight cases (29 individuals). Each case included an individual with ABI, a family member, a job coach and a co-worker (triangulation). The eight individuals with ABI had completed vocational rehabilitation and were purposively selected based on whether they had sustained employment (4) or not (4). Results. Similarity between pre-injury work or leisure interest and post-injury work, unconditional motivation, insight and the ability to cope with cognitive and behavioural sequelae were beneficial in sustaining employment. Post-injury instances of poor cognitive or behavioural function did not necessarily affect sustained employment. The vocational rehabilitation programme was beneficial in building up confidence, providing continued follow up and providing co-worker ‘twins’ in the work place. Employers with a personal experience of disability helped individuals with ABI to sustain employment. Conclusions. Similarities between pre-injury work or leisure interests and post-injury work improved motivation. Factors associated with sustained employment were insightful, unconditional, internal motivation providing an ability to cope, confidence provided by ongoing vocational rehabilitation support through job coaches, supportive co-workers and employers with a personal experience of disability. People with ABI can be outstanding employees.

The supervision of professional doctorates: Experiences of the processes and ways forward

The doctoral research terrain is changing, as new-styles, for example professional doctorates, are being developed (Park, C., 2005. New variant PhDL the changing nature of the doctorate in the UK. Journal of Higher Education Policy and Management 27(2), 189-207). There is a scarcity of literature aimed at supervisors (Gatfield, T., 2005, An investigation into PhD supervisory management styles: development of a dynamic conceptual model and its managerial implications. Journal of Higher Education Policy and Management 27(3), 311-325) and this is particularly so in relation to professional doctorates. In this position paper we argue that the supervisory approach required for a professional doctorate student is different than that required for a PhD. Professional doctorate students, like PhD students, are required to make an explicit contribution to knowledge. Their emphasis, however, needs to be in producing knowledge that is theoretically sound, original, and of relevance to their practice area. This is of increasing importance within healthcare with the growing emphasis on patient driven translational research. As such, the students and their supervisors face unique challenges of balancing academic requirements with praxis. We suggest this requires specific tools to make explicit the dialogical relationship between a particular project and the cultural, social, educational and political aspects of its environment. We expose the potential of soft systems methodology as a means to highlight the emergent aspects of a doctoral practice development project, their respective and evolving supervisory interactions. This focus of this paper is therefore not about guiding supervision in a managerial sense, but rather at offering methodological suggestions that could underpin applied research at doctoral level.

Post-Operative 3-Dimensional Contrast-Enhanced Ultrasound (CEUS) Versus Tc99m-DTPA in the Detection of Post-Surgical Perfusion Defects in Kidney Transplants: Preliminary Findings

PURPOSE 2800 renal transplants are carried out annually in the UK and it is standard practice to perform a Tc-DTPA renogram examination after surgery to check perfusion. This provides some functional information but suffers from low spatial resolution, is lengthy, immobile and costly and uses ionizing radiation. We surmised that contrast-enhanced ultrasound (CEUS) would provide an accurate alternative with increased speed, resolution (temporal and spatial), cost efficiency and safety. MATERIALS AND METHODS 97 renal transplant patients underwent both Tc-DTPA and CEUS after surgery to assess the perfusion of the graft. Tc-DTPA was performed in the nuclear medicine department with at least 10 minutes of continuous screening and a standard dose of 150 mBq Tc-DTPA. CEUS consisted of I. V. 2.4 ml Sonovue contrast agent, 60 seconds continuous capture and a 3 D acquisition of the organ. 3 D CEUS was assessed using QLab analysis software. RESULTS Tc-DTPA detected 9 perfusion defects of varying size. CEUS detected all these defects plus 14 further defects (0.2 - 17 % of total renal volume) not detected on DTPA. These results demonstrate a statistically significant divergence (p < 0.0001). Retrospective clinical correlation showed ligated polar arteries in 8 of these 14 cases. CONCLUSION CEUS will detect perfusion defects seen with Tc-DTPA and due to increased spatial and temporal resolution and multiple scanning angles, will detect further perfusion defects not seen on Tc-DTPA. 3 D CEUS is useful in the quantification of perfusion defects. CEUS is an accurate examination for detecting renal transplant perfusion defects and will detect significantly more defects than DTPA.

Telephone management of severe wasp stings in rural Nepal: a case report

We describe a young woman from a rural village in Nepal who suffered multiple wasp and hornet stings. She collapsed and was managed by a telephone consultation between a village health worker and a hospital specialist. The patient recovered fully. Not only was the telephone consultation efficient in terms of cost savings from avoided hospital treatment, but it was also effective since, with conventional care, there was a strong possibility that the patient would have died on her way to hospital. This case illustrates the potential for telephone-delivered rural care and management in emergency situations.

An Exploration of Comfort and Discomfort amongst Children and Young People with Intellectual Disabilities Who Depend on Postural Management Equipment.

BACKGROUND The natural response to the intrusive bodily sensation is positional change. This study explored how children and young people (CYP) with intellectual disabilities had their comfort needs met when using adaptive positioning equipment. METHODS Thirteen qualitative case studies were undertaken. A parent, a teacher/key worker and a therapist for each CYP were interviewed, and daily routines were observed, with selective video recording. Single case and cross case analyses were undertaken. RESULTS Attentive caregivers read the behavioural expressions of the CYP and responded reassuringly, safeguarding them from discomforting experiences. Threats to comfort include the restrictive nature of some equipment accessories, positioning errors and procedural stretching. CONCLUSIONS The same item of equipment can be both comfortable and uncomfortable. Given the social and interactional world in which the CYP live and learn, it is others who must accept responsibility for ensuring their optimal level of comfort.

Developing a Taxonomy of Indexing Categories to Identify Need in Parkinson's Disease

Group discussions in a variety of settings were used to explore the reality of living with Parkinson’s disease. These discussions were undertaken with members of Parkinson’s Disease Society groups. A total of 54 individuals contributed; approximately half had Parkinson’s disease, the rest were carers. Transcripts of discussions were analysed for thematic content using the Non Numerical Data Indexing Searching and Theorising Package (NUD.IST).