Advances in Teaching & Learning Day Abstracts 2005

Proceedings of the Advances in Teaching & Learning Day Regional Conference held at The University of Texas Health Science Center at Houston in 2005

The Development and Evaluation of a Psycho-education Booklet for Genetic Aortic Disorders

Introduction:Genetic aortic disorders (GA disorders) refer to a group of heritable conditions where the main artery of the heart, the aorta is affected. The commonality of GA disorders is the increased risk of serious cardiac complications such as an aortic tear or rupture. Affected individuals face multiple and complex medical and lifestyle challenges. Improving the individual’s understanding of the diagnosis, treatment, and associated impacts, is essential to facilitate coping, decision-making, and self-management. Evidence also show that patients who are more involved in the treatment of their chronic disease report improved health and psychological distress (Barlow et al., 2002). Currently available psycho-educational resources, however, are insufficient for those recently diagnosed with a GA disorder. The current thesis describes the development and evaluation of an evidence-based psycho-education booklet for patients recently diagnosed with a GA disorder Development:A patient psycho-educational booklet was developed based on a literature review, expert consultation, and guided by the National Health and Medical Research Council (NHMRC, 1999) recommendations. Evaluation:A mixed method design was implemented. Twenty individuals with a diagnosis of a GA disorder, mean age = 49 years, equal number of males and females, with varying stages of disease and treatment, were recruited to complete the patient evaluation questionnaire. A further seven individuals were recruited for patient group interviews. Nine clinicians with expertise in GA disorders completed the clinician evaluation questionnaire. Results: The overall findings of the evaluation indicated that the information booklet was very well-received by the patient group and was considered informative, easy to read, practical, and a highly valuable resource. Overall, the clinicians endorsed the booklet as an extremely useful information resource about GA disorders and associated topics and supported giving the booklet to patients at the time of diagnosis and approved its ongoing use in consultations. The majority of clinicians commended the content as suitably pitched for the intended audience, and the format as appropriate in length, booklet size, layout and graphics. Conclusion:This study aimed to develop and pilot evaluate a patient psycho-education booklet specifically for those recently diagnosed with a GA disorder. The evaluation showed that the booklet was considered very positively in its clarity, usefulness, and acceptability by the patients with a diagnosis of a GA disorder, and of usefulness, benefit, and acceptability by health professionals who provide medical support for patients with GA disorders. To our knowledge, this will be the first psycho-education booklet developed and evaluated for an Australian audience

Questioning the Quantitative Imperative: Decision Aids, Prevention, and the Ethics of Disclosure

Patients should not always receive hard data about the risks and benefits of a medical intervention. That information should always be available to patients who expressly ask for it, but it should be part of standard disclosure only sometimes, and only for some patients. And even then, we need to think about how to offer it

Study protocol: a cluster randomized controlled trial of web-based decision support tools for increasing BRCA1/2 genetic counseling referral in primary care

Background BRCA1 and BRCA2 mutations confer a substantial breast risk of developing breast cancer to those who carry them. For this reason, the United States Preventative Services Task Force (USPSTF) has recommended that all women be screened in the primary care setting for a family history indicative of a mutation, and women with strong family histories of breast or ovarian cancer be referred to genetic counseling. However, few high-risk women are being routinely screened and fewer are referred to genetic counseling. To address this need we have developed two decision support tools that are integrated into clinical care. Method This study is a cluster randomized controlled trial of high-risk patients and their health care providers. Patient-provider dyads will be randomized to receive either standard education that is supplemented with the patient-facing decision aid, RealRisks, and the provider-facing Breast Cancer Risk Navigation Toolbox (BNAV) or standard education alone. We will assess these tools’ effectiveness in promoting genetic counseling uptake and informed and shared decision making about genetic testing. Discussion If found to be effective, these tools can help integrate genomic risk assessment into primary care and, ultimately, help expand access to risk-appropriate breast cancer prevention options to a broader population of high-risk women. Trial registration This trial is retrospectively registered with ClinicalTrials.gov Identifier: NCT03470402 : 20 March 2018

The evolution of the biomedical paradigm in oncology: Implications for cancer therapy

[No abstract available

Effect of Pre-test Genetic Counseling for Deaf Adults on Knowledge of Genetic Testing

Empirical data on genetic counseling outcomes in the deaf population are needed to better serve this population. This study was an examination of genetics knowledge before and after culturally and linguistically appropriate pre-test genetic counseling in a diverse deaf adult sample. Individuals ≥18 years old with early-onset sensorineural deafness were offered connexin-26/30 testing and genetic counseling. Participants completed questionnaires containing 10 genetics knowledge items at baseline and following pre-test genetic counseling. The effects of genetic counseling, prior beliefs about etiology, and participant’s preferred language on genetics knowledge scores were assessed (n = 244). Pre-test genetic counseling (p = .0007), language (p < .0001), prior beliefs (p < .0001), and the interaction between counseling and beliefs (p = .035) were predictors of genetics knowledge. American Sign Language (ASL)-users and participants with “non-genetic/unknown” prior beliefs had lower knowledge scores than English-users and participants with “genetic” prior beliefs, respectively. Genetics knowledge improved after genetic counseling regardless of participants’ language; knowledge change was greater for the “non-genetic/unknown” beliefs group than the “genetic” beliefs group. ASL-users’ lower knowledge scores are consistent with evidence that ethnic and cultural minority groups have less genetics knowledge, perhaps from exposure and access disparities. Culturally and linguistically appropriate pre-test genetic counseling significantly improved deaf individuals’ genetics knowledge. Assessing deaf individuals’ prior beliefs is important for enhancing genetics knowledge

Lifting the Burden of Addiction: Philanthropic Opportunities to Address Substance Use Disorders in the United States

Substance use disorders (SUDs), also known as substance abuse or addiction, affect an estimated 20 million or more adolescents and adults in the U.S. This guidance provides philanthropic funders with the tools & information to reduce immediate harm from substance use disorders and reduce the burden of the disorder over the long term. This includes reducing the damage the disorder causes to people with SUDs and their loved ones, reducing the overall incidence of SUDs, and reducing SUD-related costs to society. We present four strategies for philanthropic funders who want to help:- Save lives and reduce SUD-related illness and homelessness- Improve access to evidence-based treatment- Improve SUD care by changing systems and policies- Fund innovation to improve prevention and treatmen