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Karin N Wagner, Haikady Nagaraja, Dawn C Allain, Adam Quick, Stephen Kolb, Jennifer Roggenbuck
Although genetic testing for amyotrophic lateral sclerosis (ALS) is widely available, it is unknown what proportion of patients with ALS have access to genetic counseling and testing, and patient attitudes towards ALS genetic testing have not been studied. We conducted a national survey of ALS patients enrolled in the Agency for Toxic Substances and Disease Registry, which consisted of multiple choice questions and two 12 item Likert scale series assessing respondents' experience with and attitude toward genetic testing...
October 20, 2016: Journal of Genetic Counseling
Rowan Forbes Shepherd, Tamara Kayali Browne, Linda Warwick
Ethical issues arise for genetic counselors when a client fails to disclose a genetic diagnosis of hereditary disease to family: they must consider the rights of the individual client to privacy and confidentiality as well as the rights of the family to know their genetic risk. Although considerable work has addressed issues of non-disclosure from the client's perspective, there is a lack of qualitative research into how genetic counselors address this issue in practice. In this study, a qualitative approach was taken to investigate whether genetic counselors in Australia use a relational approach to encourage the disclosure of genetic information from hereditary breast and ovarian cancer (HBOC) clients among family members; and if so, how they use it...
October 19, 2016: Journal of Genetic Counseling
Amy R Reed
This article analyzes narrative illustrations in genetic counseling textbooks as a way of understanding professional habitus--the dispositions that motivate professional behavior. In particular, this analysis shows that there are significant differences in how the textbooks' expository and narrative portions represent Down syndrome, genetic counseling practice, and patient behaviors. While the narrative portions of the text position the genetic counseling profession as working in service to the values of genetic medicine, the expository portions represent genetic counselors as neutral parties...
October 19, 2016: Journal of Medical Humanities
Lisa M Quintiliani, Devin M Mann, Marissa Puputti, Emily Quinn, Deborah J Bowen
BACKGROUND: Health behavior and weight management interventions for cancer survivors have the potential to prevent future cancer recurrence and improve long-term health; however, their translation can be limited if the intervention is complex and involves high participant burden. Mobile health (mHealth) offers a delivery modality to integrate interventions into daily life routines. OBJECTIVE: The objective of this study was to evaluate the effects of a one-group trial with a pre-post evaluation design on engagement (use and acceptability), physiological (weight), behavioral (diet and physical activity), and other secondary outcomes...
January 2016: JMIR Cancer
Luis-Joaquin Garcia-Lopez, Natalia Bonilla, Jose-Antonio Muela-Martinez
Social anxiety disorder is a highly prevalent psychiatric disorder, with elevated comorbidity rates with other mental health disorders and may cause severe negative consequences. In adolescence, there is a lack of research on how comorbid disorders to social anxiety tends to form particular associations. With a large sample of adolescents with a clinical diagnosis of social anxiety disorder, data have revealed that certain disorders are more frequent and tend to dwell on concrete aggregates. Thus, it may be particularly useful and efficient for mental health providers, pediatricians and school counselors to screen for generalized anxiety disorder and specific phobia when assessing SAD in youth...
September 2016: Psychiatry Investigation
Simon B Zeichner, Christine Stanislaw, Jane L Meisel
In recent years, we have learned a great deal about pathogenic mutations that increase the risk of breast and ovarian cancer, particularly mutations in the BRCA1 and BRCA2 genes. Here we review current guidelines on breast and ovarian cancer screening, prophylactic surgery, and other risk-reduction strategies in patients with these mutations, and we detail the data that drive these recommendations. We also discuss guidelines on screening and management for other cancers associated with BRCA1 and BRCA2, such as male breast cancer, pancreatic cancer, and prostate cancer...
October 15, 2016: Oncology (Williston Park, NY)
Lauren J Ralph, Diana Greene Foster, Katrina Kimport, David Turok, Sarah C M Roberts
OBJECTIVE: Evaluating decisional certainty is an important component of medical care, including preabortion care. However, minimal research has examined how to measure certainty with reliability and validity among women seeking abortion. We examine whether the Decisional Conflict Scale (DCS), a measure widely used in other health specialties and considered the gold standard for measuring this construct, and the Taft-Baker Scale (TBS), a measure developed by abortion counselors, are valid and reliable for use with women seeking abortion and predict the decision to continue the pregnancy...
October 10, 2016: Contraception
Brian S Barnett, Macjellings Mulenga, Michelle M Kiser, Anthony G Charles
OBJECTIVE: While psychological care, including supportive group therapy, is a mainstay of burn treatment in the developed world, few reports of support groups for burn survivors and their caregivers in the developing world exist. This study records the findings of a support group in Malawi and provides a qualitative analysis of thematic content discussed by burn survivors and caregivers. MATERIALS AND METHODS: We established a support group for burn survivors and caregivers from February-May 2012 in the burn unit at Kamuzu Central Hospital in Lilongwe, Malawi...
October 12, 2016: Burns: Journal of the International Society for Burn Injuries
Sonja Goedeke, Ken Daniels
In New Zealand, embryo donation (ED) is "open," allowing offspring to access genetic information. Donors and recipients meet prior to donation. Drawing on interviews with 15 recipients, 22 donors, and nine counselors, this article discusses how ED may be constructed as a form of gifting. This discourse may evoke expectations that recipients will express gratitude for the gift, including through honoring contact agreements. Donation becomes a relational practice of obligations and counter-obligations. However, the gift discourse may not adequately capture the emotional sacrifice experienced by donors...
October 13, 2016: Qualitative Health Research
Silvia Orsulic-Jeras, Carol J Whitlatch, Sarah M Szabo, Evan G Shelton, Justin Johnson
This article describes the implementation of SHARE (Support, Health, Activities, Resources, and Education), a counseling-based care-planning intervention for persons living with early-stage dementia and their family caregivers (CGs). The foundation of SHARE is built upon assessing and documenting the person living with dementia's care values and preferences for future care. Using the SHARE approach, CGs are given an opportunity to achieve an understanding of their loved one's desires before the onset of disease progression when the demand for making care decisions is high...
October 13, 2016: Dementia
Ruth Heisey, June C Carroll
OBJECTIVE: To summarize the best evidence on strategies to identify and manage women with a family history of breast cancer. SOURCES OF INFORMATION: A PubMed search was conducted using the search terms breast cancer, guidelines, risk, family history, management, and magnetic resonance imaging screening from 2000 to 2016. Most evidence is level II. MAIN MESSAGE: Taking a good family history is essential when assessing breast cancer risk in order to identify women suitable for referral to a genetic counselor for possible genetic testing...
October 2016: Canadian Family Physician Médecin de Famille Canadien
Marina J Corines, Jada G Hamilton, Emily Glogowski, Chris A Anrig, Rachael Goldberg, Kate Niehaus, Erin Salo-Mullen, Megan Harlan, Margaret R Sheehan, Magan Trottier, Asad Ahsraf, Christina Tran, Lauren Jacobs, Rohini Rau-Murthy, Anne G Lincoln, Mark E Robson, Jose G Guillem, Arnold J Markowitz, Kenneth Offit, Zsofia K Stadler
Few reports of educational and counseling support resources exist for Lynch syndrome (LS), a disorder requiring multi-organ cancer screening and specialized medical care throughout adult life. Here we describe the development and efficacy of two resources designed to address this need, the Memorial Sloan Kettering Cancer Center Clinical Genetics Service annual Lynch Syndrome Educational Workshop (LSEW), and a quarterly Lynch Syndrome Patient Advocacy Network (LSPAN) support group. The LSEW and LSPAN were implemented beginning in 2012...
October 12, 2016: Journal of Genetic Counseling
Rossella Graffeo, Luca Livraghi, Olivia Pagani, Aron Goldhirsch, Ann H Partridge, Judy E Garber
PURPOSE: Genetic evaluation is increasingly becoming an integral part of the management of women with newly diagnosed breast and ovarian cancer (OC), and of individuals at high risk for these diseases. Genetic counseling and testing have been incorporated into oncological care to help and complete management and treatment strategies. Risk assessment and early detection strategies in individuals with BRCA1/2 mutations and with Lynch syndrome have been quite extensively studied, whereas much less is known about the management of mutation carriers with less common high-penetrance cancer susceptibility genes (PTEN, TP53, STK11, CDH1), and particularly those who carry mutations in moderate-penetrance genes (e...
October 12, 2016: Breast Cancer Research and Treatment
Delelegn Tsegaye, Leul Deribe, Shambel Wodajo
Objectives: Adherence of HIV positive pregnant and lactating mothers to ART is a central component in PMTCT. Thus, the aim of this study was to measure the level of adherence and identify factors associated with adherence to option B+ PMTCT among pregnant and lactating mothers in selected government health facilities of South Wollo Zone, Amhara region, North East Ethiopia. Methods: An institution based cross sectional quantitative study design was employed from March 1 to April 14, 2016 using standard structured data collection instrument...
October 13, 2016: Epidemiology and Health
(no author information available yet)
No abstract text is available yet for this article.
October 12, 2016: Journal of Genetic Counseling
Stephanie A Cohen, Megan E Tucker, Paula Delk
The aims of this study were to document movement of genetic counselors (GCs) out of clinical positions and identify factors that might help employers attract and retain clinical GCs. A confidential on-line survey of GCs ever licensed in the state of Indiana was conducted. Of the 46 respondents, most provide direct patient care (69.6 %), have worked in their current position for 5 years or less (72.1 %), and are experienced genetic counselors, having graduated between 6 and 15 years ago (43.5 %). One-third (32...
October 8, 2016: Journal of Genetic Counseling
Yvonne Bombard, Linda Rozmovits, Anne Sorvari, Corinne Daly, June C Carroll, Erin Kennedy, Linda Rabeneck, Nancy N Baxter
PURPOSE: Population-based reflex testing of colorectal tumors can identify individuals with Lynch syndrome (LS), but there is debate regarding the type of patient discretion such a program warrants. We examined health-care providers' views and experiences to inform the design of a reflex-testing program and their perspectives regarding an opt-out option. METHODS: We interviewed providers managing LS or colorectal cancer patients, including surgeons, genetic counselors, oncologists, primary-care physicians, and gastroenterologists...
October 6, 2016: Genetics in Medicine: Official Journal of the American College of Medical Genetics
Brianne E Kirkpatrick, Misha D Rashkin
Ancestry testing is a home DNA test with many dimensions; in some cases, the implications and outcomes of testing cross over into the health sphere. Common reasons for seeking ancestry testing include determining an estimate of customer's ethnic background, identifying genetic relatives, and securing a raw DNA data file that can be used for other purposes. As the ancestry test marketplace continues to grow, and third-party vendors empower the general public to analyze their own genetic material, the role of the genetic counselor is likely to evolve dramatically...
October 4, 2016: Journal of Genetic Counseling
Andrea Farkas Patenaude, Katherine A Schneider
The defining difference between genetic and traditional medicine is that genetic findings have implications not just for the patient, but also for their relatives. Discussion of a test result between parent and child is both a transformative and a translational moment in the life of a family. Parents report wanting help in talking to their children. The challenge for genetic counselors and other providers is to be able to recognize which issues are at the core of parental distress and be able to offer recommendations to empower and support parents...
October 3, 2016: Journal of Genetic Counseling
Ashley Rhodes, Lindsey Rosman, John Cahill, Jodie Ingles, Brittney Murray, Crystal Tichnell, Cynthia A James, Samuel F Sears
Genetic assessment for inherited cardiovascular disease (CVD) is increasingly available, due in part to rapid innovations in genetic sequencing technologies. While genetic testing is aimed at reducing uncertainty, it also produces awareness of potential medical conditions and can leave patients feeling uncertain about their risk, especially if there are ambiguous results. This uncertainty can produce psychological distress for patients and their families undergoing the assessment process. Additionally, patients may experience psychological distress related to living with inherited CVD...
September 30, 2016: Journal of Genetic Counseling
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