No description available.

This research study was focused on two broad areas of exploration. The first area deals with the identification of various factors affecting a family when a family member has the anemia or symptomatic form of sickle cell disease. Data obtained from a personally administered questionnaire (Form A), enabled the researchers to determine if genetic counseling had been offered and received, and if this counseling was considered helpful by the respondents. In addition to this, data was collected on several demographic variables, including sex and age of patient, family income, religion, education, ethnic group, living arrangements and occupation, and response to and knowledge of sickle cell anemia.

Thesis (M.S.)--Brandeis University, 2009. / Title from PDF title page (viewed on May 29, 2009). Includes bibliographical references.

Thesis (M.A.)--Catholic Theological Union, 1977. / Bibliography: leaf 166.

abstract: Patients who attend genetic counseling appointments report high anxiety and varied satisfaction levels following their appointments. It has been suggested in previous literature that some of the increase in anxiety and reduction in satisfaction is caused by lack of prior information. Here, I investigated whether providing patients with a glossary of genetic terms prior to their counseling appointment improves patient satisfaction and reduces anxiety in an oncology genetic counseling appointment. I surveyed 96 patients attending their first genetic counseling appointment at Banner MD Anderson Cancer Center and analyzed 92 patients for which I had complete data. Patients were randomly selected to receive one of two folders, containing either an educational document or an educational document and a glossary comprised of ten genetic terms. Each patient was given a post-counseling survey at the end of the counseling appointment to assess their anxiety and satisfaction levels. I did not observe a statistically significant difference in levels of anxiety or satisfaction, but the data are consistent with increased satisfaction for patients who received a glossary. Interesting, the data are also consistent with decreased anxiety levels for patients who did not receive a glossary. Furthermore, I did observe differences in reported satisfaction with patients who had college experience and patients that did not have any college experience. / Dissertation/Thesis / Masters Thesis Biology 2018

The increasing numbers of genetic tests in clinical settings have identified many variants of uncertain significance (VUS) in genes associated with inherited cardiac arrhythmias and inherited cardiomyopathies. Evaluation of clinical practices including counseling strategies and medical management recommendations for patients and their families is important to improve patient outcomes and prevent over- or under-treatment that may result in morbidity or fatality. The purpose of this study is to describe provider practices related to VUS results including how they conduct risk assessments and ascertain what information and medical management recommendations they provide to patients with VUS results and the patients’ family members. Additionally, we aim to describe providers’ concerns and informational needs related to counseling about a VUS. An anonymous online survey was developed for the current study and distributed to genetic counselors through the National Society of Genetic Counselors (NSGC) listerv and to cardiologists via emails obtained from publicly available resources. The survey explored healthcare providers’ confidence in counseling about a VUS, explanation of a VUS to patients, topics covered before and after genetic testing, and recommendations for patients with a VUS and their families using clinical vignettes. Providers (N=102) who completed the survey included 29 cardiovascular genetic counselors, 50 genetic counselors from other specialties, and 23 cardiologists. A hypothetical clinical scenario was used in which a young adult patient had a VUS in a gene causing Arrhythmogenic Right Ventricular Cardiomyopathy, but did not meet clinical diagnostic criteria for the condition. The patient’s only concerning issues included a personal history of fainting during exercising and sudden death of a 45 year old first-degree relative. Nearly 9% of all providers incorrectly described the VUS as likely pathogenic, while 15% would downplay the finding by indicating the VUS is more likely to eventually be reclassified as benign. Genetic counselors feel more confident about counseling about VUS results (p<0.001). Both cardiovascular genetic counselors and cardiologists feel confident in making medical management recommendations; however, cardiologists are more likely to recommend treatment with beta-blockers and exercise limitation for the patient. Compared to cardiac genetic counselors, other genetic counselors (p=0.001) and cardiologists (p=0.014) were more likely to recommend clinical testing for family members even though testing is expected to be uninformative, especially given the absence of any clinical diagnosis in the family. These findings highlight the expertise of different providers in different specialty area and suggest the need for interdisciplinary clinics that include cardiologists, cardiac genetic counselors, nurses, geneticists, psychologists and others to optimize care for challenging cases where VUS results create uncertainty.

This follows an earlier study of the same data set, which, through its findings, presented new questions that are investigated in this study. Both studies used a prospective controlled design, wherein women receiving genetic counseling for breast cancer risk were randomized into two groups. Subjects receiving an audiotaped recording of their genetic consultation (tape group) were compared to subjects who also had a genetic consultation but did not receive an audiotaped recording of it (no-tape group). Participants were drawn from attendees at the genetic clinics of two London hospitals and included 115 women with a family history of breast cancer. Cancer worry and psychological distress were assessed before genetic consultation (baseline), and at one- and six-month follow-ups by post. Objective risk was estimated by the geneticist during the consultation, and subjective risk was assessed at one month follow-up. The goals of the current study were to investigate relationships between cancer worry, psychological distress, and recall of genetic risk for breast cancer in a sample of women receiving genetic counseling for breast cancer risk, and to investigate the role sociodemographic variables on cancer worry, psychological distress, or risk recall for these women. Results for this sample of women with a family history of breast cancer found that there were consistent relationships between cancer worry, psychological distress, objective risk, and subjective risk before and after genetic consultation. This suggests that women=s psychological responses are appropriate to their level of cancer risk. There were no differences found between the tape and no-tape groups for objective or subjective risk, or for nearness of recall accuracy or degree of under-/over-estimation. Provision of an audiotaped recording of the genetic consultation did not appear to enhance recall of risk information. The role of sociodemographic variables on the psychological and risk variables assessed in this study was very minor. Age was mildly correlated with cancer worry, and employment was predictive of cancer worry only at baseline.

No description available.

No description available.

The purpose of this practicum is to demonstrate the need for social workers to be employed by Genetics Clinics as a member of the genetics team, the hypothesis being that there is need for social work involvement in the field of medical genetics. Research was completed through a survey of the literature in the field of: counseling problems in genetic counseling, social work involvement in genetics clinics, the role of nursing in genetic counseling, and psychological studies concerning problems of genetic counseling. Literature in these areas was extremely limited During the summer of 1971, a questionnaire was sent to ninety genetic clinics, requesting information on the role that social work played in these clinics. Interviews were held with Dr. Everett Lovrien, co-director of the University of Oregon Medical School Genetics Clinic, Dr. Robert Koler, director of Genetic Research. University at Oregon Medical School, Mrs. Sue Underwood, Public Health Nurse with the Genetics Clinic, and Dr. Amelia Schultz, research instructor and medical social worker for the Clinical Research Center, University of Washington, Seattle, Washington. regarding their opinions concerning the role that social work should play in genetic counseling. This paper will incorporate a brief history of genetics and the establishment of genetic counseling clinics, the goals and purposes of a team approach to medical service, a summary of the findings of the questionnaire, and a discussion of the areas where social work could incorporate its own skills and areas of expertise in the clinic into the three major areas of patient care, research, and teaching.