Autosomal dominant inheritance of non-syndromic renal hypoplasia and dysplasia: dramatic variation in clinical severity in a single kindred.
Explore the source record for details and available documents.
Adolescent↗
Biomedical subjects
Judy Taylor
Publications and source records attributed to Judy Taylor.
'They get a bit funny about going'--transfer issues for rural and remote Australian Aboriginal people.
BACKGROUND: The integration of health care among providers to achieve good outcomes has been investigated in urban locations. However, more information is needed about what happens to people from rural areas, particularly when travelling away from their families and healthcare provider to receive hospital care. Therefore, a national project was conducted in 2004 that aimed: to document the experiences of people travelling to and from rural and remote areas to city hospitals; to identify factors that affect their optimal health outcomes; and to improve the exchange of information between primary healthcare providers and hospital staff. The Australian Rural Health Education Network (AHREN) coordinated the study, which consisted of several case studies. This article, part of the larger investigation, presents a segment on issues for Aboriginal people living in a rural and remote Australian area that were identified by local health workers, and suggestions that might assist in overcoming them. METHOD: Research and ethics approval was obtained from our university, hospital and the Aboriginal Health Council. Three Aboriginal health workers, employed at the community controlled Aboriginal health centre, involved in transport, consented to be audiotaped in a group interview. They are named researchers. Questions were: What are the issues in transfer to and from the city hospital? What special problems exist for the Aboriginal people you are involved with? What improvements/systems changes would you suggest? FINDINGS: Funding and equity of the Patient Assisted Transport Scheme (PATS) created problems. Raising payments for PATS and extra costs to clients and families were big issues. Antisocial arrival times, separation from family, transport to hospital and accommodation all caused distress and confusion. Potentially dangerous misunderstandings happened through language and cultural differences. Traditional people travelling unaccompanied were at risk. Often PATS notification requirements could not be met in emergencies and onsite accommodation was described as frightening and culturally inappropriate. At the time of interview, Stepdown transport did not cover people staying with families. Lack of privacy, different understandings of family and other issues important for Aboriginal people continue to add stress for families already suffering. DISCUSSION: PATS could be streamlined and more user-friendly. Aboriginal Liaison Officers in hospitals provide a link for Aboriginal clients, but unrealistic expectations may be placed on them and they are not available 24 hours a day. Strategies for improved communication are needed. A space and campfire in hospital grounds for traditional people and their families to gather would assist.
Attitude to Health↗
Post-transplantation anaemia in adult and paediatric renal allograft recipients-Guy's Hospital experience.
BACKGROUND: The commonest cause of renal transplant loss is death with a functioning graft, usually from an excess of cardiovascular disease (CVD). Anaemia is becoming increasingly recognized as a reversible risk factor for the development of CVD. The purpose of this study was to estimate the prevalence of post-transplantation anaemia (PTA) in a large population of stable adult and paediatric renal transplants in one centre and to correlate the estimated glomerular filtration rate (eGFR), iron indices and the use of immunosuppressants with the prevalence of anaemia. METHODS: Every adult and paediatric patient with a functioning renal transplant and more than 3 months post-engraftment at Guy's hospital, London, as of 31 December 2004 and who had a valid creatinine and haemoglobin, in the period 1 September-31 December 2004 inclusive, was identified. A large database of clinical and biochemical indices was built up on the basis of medical notes and electronic patient records. Results were analysed for the prevalence of anaemia and risk factors for its development. Anaemia was defined according to the WHO criteria. All patients on treatment with an erythropoiesis stimulating agent were classified as anaemic, irrespective of haemoglobin. RESULTS: A total of 878 adults and 73 children were identified. Mean haemoglobin in adults was 12.9 +/- 1.6 g/dl and 11.8 +/- 1.4 g/dl in the children. Mean eGFR was 49.3 +/- 20.1 ml/min in adults and 65.7 +/- 18.8 ml/min in the paediatric cohort. Haemoglobin correlated positively with the eGFR in both cohorts (R = 0.33 and 0.29 in adults and children, respectively (P < 0.0001 for both)). We identified anaemia in 45.3% of adults and 22% in children. Ferritin levels were lower in children than in adults (79 +/- 93 vs 204 +/- 353 mg/l), but were higher in both cohorts among the non-anaemic populations than in those with anaemia. 58% of adults taking mycophenolate mofetil (MMF) were anaemic compared with 22% of children. One child, and 68 adults, were on recombinant erythropoietin. Multiple regression analyses identified age, female gender, eGFR and serum ferritin levels as independent predictors of haemoglobin in adult subjects. CONCLUSIONS: The prevalence of PTA was high in both adult and paediatric cohorts while comparatively few patients were being treated with erythropoiesis stimulating agents. The strongest predictors of haemoglobin in this cohort of patients were age, female sex and graft function. Immunosuppression including MMF or sirolimus was associated with a higher prevalence of anaemia, but this was likely to be the result of poorer graft function in these subjects. Iron deficiency did not seem to be a causative factor for anaemia in this population.
Adult↗
Community participation in organising rural general practice: is it sustainable?
OBJECTIVE: We analysed community participation in organising rural general medical practice in order to suggest ways to extend and sustain it. DESIGN: A multisite, embedded case-study design collecting data through semistructured interviews, non-participation observation and a document analysis. SETTING: One remote and two rural communities in Australia. PARTICIPANTS: Community members, GPs, health professionals, government officers and rural medical workforce consultants. RESULTS: High levels of community participation in recruiting and retaining GPs, organising the business model, and contributing to practice infrastructure were evident. Community participation in designing health care was uncommon. Participation was primarily to ensure viable general practice services necessary to strengthen the social and economic fabric of the community. There were factors about the decision-making and partnership processes in each of the communities that threatened the viability of community participation. CONCLUSIONS: We recommend that a concept of community development and explicit facilitation of the processes involved is necessary to strengthen participation, create effective partnerships and ensure inclusive decision-making.
Community Health Planning↗
Smoothing things over: the transition from pediatric to adult care for kidney transplant recipients.
BACKGROUND: Transition is a planned movement of adolescents with chronic physical and medical conditions from child-centered to adult-oriented healthcare systems as opposed to a purely administrative event. OBJECTIVE: To evaluate the transition of pediatric kidney transplant recipients to the adult service at Guy's Hospital between 2000 and 2001 as compared with best practice from the literature, and to establish client satisfaction with the process. DESIGN: Data were collected by means of a retrospective review of case notes, clinician interview, and a patient satisfaction questionnaire, and analyzed by a single reviewer. MAIN OUTCOME MEASURES: Sixteen cases were analyzed with respect to their progress over the period of 1 year before and 1 year after transfer by looking at markers of adherence; a clinician's subjective assessment of overall graft stability before, during, and after transfer; and whether subjects chose to attend the transitional clinic. RESULTS: There was no qualitative difference in adherence or control among the patients who experienced the transitional clinic and those who did not. Patients who were considered stable and adherent before transition were not necessarily the same following transfer and vice versa. Patients who experienced the transitional clinic were not more satisfied as a group, although 9 of 11 thought their transition was "OK" or better. CONCLUSION: This is an extremely challenging area of pediatric nephrology; all patients need a high level of support. Services cannot be targeted to high-risk groups.
Adolescent↗
Chronic allograft nephropathy and mycophenolate mofetil introduction in paediatric renal recipients.
Mycophenolate mofetil (MMF) introduction with concurrent reduction in calcineurin inhibitors has been shown to be beneficial in chronic allograft nephropathy (CAN) in adults. MMF was introduced to 19 children with CAN 26.3+/-5.8 (range 3.1-82.6) months after transplantation. Patients were followed up for a mean of 13.2+/-2.9 (range 1.2-51.1) months. The mean initial MMF dose was 660+/-56 mg/m2 per day, increased to 1,042+/-73 mg/m2 per day a year later. Cyclosporin was reduced from 138+/-10 mg/m2 per day at MMF introduction, to 116+/-15 mg/m2 per day at 6 months and 107+/-24 mg/m2 per day at 1 year. Six months prior to MMF introduction GFR deteriorated by -32.7+/-7.3 ml/min per 1.73 m2 per year. Six months after the introduction of MMF, GFR improved by +26.2+/-7.1 ml/min per 1.73 m2 per year (P <0.001). The introduction of MMF significantly reduced both the graft rejection rate (P=0.01) and systolic blood pressure (P=0.01), without a significant change in antihypertensive treatment. Haematological parameters did not significantly differ before and after MMF introduction. The introduction of MMF in paediatric renal transplant recipients with CAN may cause a significant improvement in GFR in both the short-term and the long-term and may well have a beneficial effect on systolic blood pressure. MMF has the potential to enable CNI-sparing protocols to be adopted.
Blood Pressure↗
Unique issues in research and evaluation in rural and remote locations: is there a place for specific research training?
BACKGROUND: There is increased interest in building research capacity in rural health research in Australia and internationally. In Australia, the Primary Health Care Research Evaluation and Development program funded by the Australian Government has supported this move. Overall this program aims to build the quantum of primary healthcare research to underpin clinical practice, health systems improvement, and policy. In order to achieve this objective, one strand of the program aims to build research capacity among practitioners. In implementing this program in rural and remote areas of the west of South Australia, the Spencer Gulf Rural Health School has identified methodological and research design issues faced by practitioners who are researching in their communities. These issues include problems encountered in living and researching in the same location and accessing small-scale statistical information. We were interested to know whether there was interest in a formal course (Rural Research and Evaluation) that would address these issues and provide information about community-based research designs. METHODS: A cross-sectional anonymous survey was designed and sent to 141 organisations in the health, human service, and local government sectors in regional South Australia. Respondents were asked to evaluate the demand and interest for a new course--Rural Research and Evaluation. The term 'rural' was used to refer to both rural and remote locations. Information was sought on the respondent's role in the organisation, current level of research participation, views about the proposed course content, and factors that the respondent thought would facilitate or inhibit their participation. The majority of questions were close-ended. RESULTS: Sixty surveys were returned giving a 42.5% response rate. Data were analysed using descriptive statistics. A high level of research and evaluation activity was reported with 80% of respondents undertaking research or evaluation as part of their professional role. There was also agreement that all the proposed topics were important to be included in a course. Each of the topics was ranked at four or five on a five-point scale by at least 58% of respondents. The topic 'understanding evaluation methodologies' was ranked at four or five by 85% of respondents, making it the most highly ranked topic. There was also consensus about the features respondents thought would make the course attractive for them to study. Over half (62%) of the respondents ranked having lecturers with a broad rural research background at five, very important, on a five-point scale. Almost half (48%) of the respondents ranked online delivery at five, a very important factor in making the course attractive to study. CONCLUSIONS: Those interested in research and evaluation may have been more likely to return the survey and there may have been respondent bias in this regard. Therefore the results must be interpreted with caution. However, the level of agreement with the proposed course topics may suggest that these reflect important issues in undertaking research and evaluation in rural and remote locations. If this is the case there is value in discussion about how these issues are dealt with in different contexts in order to overcome some of the barriers to effective research.
Cross-Sectional Studies↗
Integrated support for Aboriginal tertiary students in health-related courses: the Pika Wiya Learning Centre.
The barriers to Indigenous people entering tertiary education, succeeding, and gaining employment in the health professions are broad and systemic. While efforts have been made to address these barriers, the number of Indigenous health professionals remains extremely low across Australia. The Pika Wiya Learning Centre in South Australia provides a range of practical, social, cultural, and emotional supports for tertiary students to increase the number of Indigenous health professionals, especially registered nurses, in the region. This paper reports on the Centre's strengths that may represent best practice in student support, and the obstacles to further development.
Focus Groups↗
Using community collaboration to develop the first successful needs assessment of the street homeless population in Canada.
Explore the source record for details and available documents.
Canada↗
Sociodemographic differences in exposure to health information.
OBJECTIVE: Baseline data from the Heart Attack REACT Study provided the opportunity to explore population subgroup differences in exposure to health information in an ethnically diverse sample from 5 regions across the United States. METHODS: During the 4-month baseline period of the REACT study, some 1,200 residents from the 20 study communities were surveyed using random digit dial telephone methods. Respondents were asked to recall health messages seen and/or heard recently, and the sources of these messages. Comparisons were made between sociodemographic subgroups defined by age, sex, race/ethnicity, education, income, work status, and geographic location. RESULTS: Except for education level differences, the amount of exposure to health information did not vary significantly by sociodemographics; however, significant variation among subgroups in the types of messages cited and the sources of these messages was observed. Minority and low-income groups were found to have less exposure to chronic disease prevention information, eg, on nutrition, exercise, and heart disease. Additionally, the sources of health information most popular among sociodemographic subgroups appeared to be a determining factor in the types of messages received. CONCLUSIONS: The results of these analyses support previous findings, adding to the sparse body of information on the best channels for reaching under-served populations.
Adolescent↗
Handling equipment installation and training challenges.
Explore the source record for details and available documents.
Biomedical Engineering↗