Biomedical subjects

Sylvia Metcalfe

Publications and source records attributed to Sylvia Metcalfe.

6 recordsLinked to original sources

PubMed2006

Evaluation of a decision aid for prenatal testing of fetal abnormalities: a cluster randomised trial [ISRCTN22532458].

BACKGROUND: By providing information on the relative merits and potential harms of the options available and a framework to clarify preferences, decision aids can improve knowledge and realistic expectations and decrease decisional conflict in individuals facing decisions between alternative forms of action. Decision-making about prenatal testing for fetal abnormalities is often confusing and difficult for women and the effectiveness of decision aids in this field has not been established. This study aims to test whether a decision aid for prenatal testing of fetal abnormalities, when compared to a pamphlet, improves women's informed decision-making and decreases decisional conflict. METHODS/DESIGN: A cluster designed randomised controlled trial is being conducted in Victoria, Australia. Fifty General Practitioners (GPs) have been randomised to one of two arms: providing women with either a decision aid or a pamphlet. The two primary outcomes will be measured by comparing the difference in percentages of women identified as making an informed choice and the difference in mean decisional conflict scores between the two groups. Data will be collected from women using questionnaires at 14 weeks and 24 weeks gestation. The sample size of 159 women in both arms of the trial has been calculated to detect a difference of 18% (50 to 68%) in informed choice between the two groups. The required numbers have been adjusted to accommodate the cluster design, miscarriage and participant lost--to--follow up. Baseline characteristics of women will be summarised for both arms of the trial. Similarly, characteristics of GPs will be compared between arms. Differences in the primary outcomes will be analysed using 'intention-to-treat' principles. Appropriate regression techniques will adjust for the effects of clustering and include covariates to adjust for the stratifying variable and major potential confounding factors. DISCUSSION: The findings from this trial will make a significant contribution to improving women's experience of prenatal testing and will have application to a variety of maternity care settings. The evaluation of a tailored decision aid will also have implications for pregnancy care providers by identifying whether or not such a resource will support their role in providing prenatal testing information.

Cluster Analysis↗

PubMed2005

Educating general practitioners about prenatal testing: approaches and challenges.

OBJECTIVES: To examine the effects of an education intervention on the knowledge and practice behaviours of general practitioners (GPs) regarding prenatal screening and diagnostic testing in Melbourne, Australia. METHODS: A single group, pre-test, repeated post-test design was used. Information on demographics, knowledge, behaviours and skills was collected via a self-administered questionnaire prior to the educational intervention. Responses to individual questions were coded and scores calculated, as well as a percent total score. Following the education, data were again collected, immediately afterwards (Post-Q) and six-to-eight months later (Foll-Q). RESULTS: Data for all three time points were collected from 63 GPs and showed a variable, and relatively poor knowledge regarding aspects of prenatal testing, especially before education. The percent mean total score at baseline was 51.2+/-1.59% (CI 48.02 to 54.39), which increased significantly (p<0.001) in both Post-Q (62.88+/-1.51%; CI 59.86 to 65.89) and Foll-Q (58.92+/-1.6%; CI 55.71 to 62.12). CONCLUSION: The educational intervention significantly increased knowledge and practice behaviour of GPs, even up to eight months later, but this could be improved further, to a considerable extent. There is a need for ongoing multi-faceted approaches to educating GPs on prenatal testing to ensure that they are engaged in appropriate practice.

Adult↗

PubMed2005

A long-term outcome study of intersex conditions.

CONTEXT: Clinical management of intersex conditions is controversial because the available evidence is limited and conflicting, with no long-term population based studies comparing matched controls. OBJECTIVE: To assess the long-term psychological, sexual and social outcomes of patients with intersex compared with two matched control populations. DESIGN, SETTING AND PARTICIPANTS: Three different aged-matched (18-32 years) patient groups completed a self-administered questionnaire of established quality of life and well-being inventories measuring physical' health, psychological adjustment and sexuality, following a mail-out to all identified patients. The intersex group (n = 50) and the Hirschsprung disease, a congenital disorder, control group (n = 27), were patients who had attended the Royal Children's Hospital, a tertiary centre, for their clinical care. The insulin dependent diabetes mellitus control group was recruited from an adult tertiary hospital. The study was conducted at the hospital-based Murdoch Childrens Research Institute. MAIN OUTCOME MEASURES: Psychological, sexual and social outcomes. RESULTS: The intersex group did not differ from controls on physical or mental health, depression, state anxiety, neuroticism, psychoticism or stressful life events. Intersex participants were satisfied with their overall body appearance, although intersex males were less satisfied than controls with the size (p <0.05) and appearance (p <0.01) of their sex organs. The intersex group was less likely to experience orgasm (p <0.05), tended to experience more pain during intercourse (p = 0.06), had more difficulties with penetration (p <0.01) and were less likely to have sexual activity several times or more a week (p <0.05) than the combined control groups. Intersex participants did not differ from controls in level of sexual desire or enjoyment of sexual activities. CONCLUSIONS: Most patients with intersex had positive psychosocial and psychosexual outcomes, although some problems were reported with sexual activity. These results overall suggest that a model of care including early genital surgery carried out at a centre of excellence with a multidisciplinary team can minimize long-term complication rates.

Adolescent↗

PubMed2004

Integrating genetics as practices of primary care.

This study examines the responses of general practitioners (GPs) in Vic., Australia to an increased emphasis on genetics in primary care. A qualitative analysis of focus group interviews with GPs in regional and metropolitan areas and one focus group interview with genetics experts showed that despite the emphasis placed on genetics by the experts, GPs remained ambivalent to the routine integration of genetics into general practice. This response from GPs has been noted in several studies and is most commonly attributed to GPs' lack of knowledge about genetics. In this study we argue that a 'cognitive deficit' understanding of the problem excludes many of the factors that GPs regard as important in relating genetics to primary care. We show that GPs' ambivalence emerges from how they situate genetics within practices of patient care and in relation to what they regard as good patient management. We found that GPs respond most enthusiastically to genetics and genetic testing if they feel it changes their management in ways they consider of benefit to their patients. GPs have specialist skills in managing the heterogeneity of patient care and these skills enable them to situate genetics relative to the overall needs of patients. Preparing GPs to 'do' genetics when the need arises by finding ways to make genetics information available to them as the need arises would facilitate the integration of genetics as practices of primary care.

Family Practice↗

PubMed2003

Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature.

Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.

Achondroplasia↗

PubMedDate not supplied

Needs assessment study of genetics education for general practitioners in Australia.

PURPOSE: Because of the explosion of genetic information resulting from the Human Genome Project and other developments in genetics and genetic technologies, primary care practitioners in Australia will be expected to have a much greater role in the practice of genetic medicine; however, little is published regarding their knowledge and attitudes to genetics, technologies, or genetics education. This study aimed to determine the genetics knowledge and educational needs of general practitioners (GPs) in Victoria, Australia, and their experiences in dealing with genetics in their practices. METHODS: Qualitative research methods were used primarily to obtain data from focus groups, interviews, and a limited survey. RESULTS: GPs believed their knowledge of genetics was poor and they felt inadequately prepared to manage patients with genetic conditions. They identified testing and counseling as areas that particularly needed strengthening. CONCLUSION: These data, together with GPs' suggestions about educational strategies, are essential for developing appropriate genetics education programs and resources that are relevant for Australian health care.

Australia↗