Increasing Utilization of Cancer Genetic Counseling Services Using a Patient Navigator Model

Rarely has utilization of genetic counseling for Hereditary Breast and Ovarian Cancer (HBOC) been studied separately from utilization of testing. At Kaiser Permanente Colorado, consistently only 30% of all members referred for HBOC attend genetic counseling. To increase the volume of genetic counseling appointments, a patient navigator approach was pilot tested in a randomized-controlled trial over 3 months. A total of 125 members were referred for HBOC genetic counseling (55 randomized to PN, 70 randomized to usual care). Utilization of referrals for Navigator-assisted members was 44%, compared to 31% in the usual care arm (p=0.16). The patient navigator significantly decreased time to appointment, with over 80% of Navigator-assisted members seen for genetic counseling less than three months from referral date, compared to 32% in usual care (p=0.002). patient navigator assistance shortens time from referral to appointment for HBOC genetic counseling, and may increase utilization of such services.     

Prereferral Intervention to Improve Special Services Delivery

Many special services providers as well as consumers of services have become disillusioned with current approaches to services delivery. As a result, there has been growing interest in the development of alternative methods and procedures for providing services. One area which has received much attention is that of prereferral intervention. Essentially, this term refers to an approach of systematically providing and documenting interventions within the regular classroom setting before a referral for special education evaluation and decision making is made. The major components of the approach are described in the article, prereferral involvement is contrasted with traditional methods of service delivery, and a case illustration demonstrating important aspects is included. Finally, advantages of the approach and several unresolved issues and potential barriers are discussed.     

Access to Child and Adolescent Mental Health Services

Adequate access to child and adolescent mental health services for young people in high need populations is an important concern of service systems researchers and program evaluators. We present results of a statewide study of access to community mental health services for eight populations of special concern. The analysis relied exclusively on existing databases in conjunction with innovative statistical techniques to provide comprehensive measures of access to care. Our findings indicate that access to care varied substantially across special populations, although children and adolescents in each of our eight “special populations” had greater access to public mental health services than members of the general population of the state. The interpretation of the findings and directions for future research are discussed.     

Focusing on Patient Needs and Preferences May Improve Genetic Counseling for Colorectal Cancer

During cancer genetic counseling, different items which counselors consider important are discussed. However, relatively little empirical evidence exists regarding the needs and preferences of counselees. In this study needs and preferences were assessed from counselees with a personal and/or family history of colorectal cancer (CRC), who were referred for genetic counseling regarding CRC. They received a slightly modified version of the QUOTE-GENE^ca questionnaire prior to their first visit to the Hereditary Cancer Clinic. Response rate was 60 % (48/80 participants). Counselees rated the importance of 45 items assessing their needs and preferences regarding the content and process of genetic counseling. Participants rated the items regarding discussion of information about their familial CRC risk (100 %) and preventive options (98 %) as important or very important. Fewer participants rated items concerning general information on genetics as important. Sensitive communication during counseling was considered very important by a large percentage of counselees. Generally, no major differences were seen between participants in relation to individual characteristics. Our data suggest that focusing on familial CRC risk and surveillance options, in combination with sensitive communication may lead to better satisfaction with genetic counseling.     

Genetic Screening Services Provided in Turkey

In Turkey, the rate of consanguineous marriage is quite high (22–24 %) and as a result, the incidence of autosomal recessive diseases and congenital anomalies is also very high and gives rise to a serious public health problem. In the last three decades, great effort has been made to avoid increases in the prevalence of these hereditary diseases. For this purpose, population-based premarital, prenatal, neonatal and adult genetic screening programs are performed in various centers such as Community Health Centers, Early Diagnosis of Cancer and Education Centers (KETEM), Prenatal and Neonatal Departments of Universities and State Hospitals and Thalessemia Screening Centers. Such centers are staffed by health professionals including physicians, family physicians, nurses, midwives, biologists and medical geneticists. Genetic counseling is also provided to patients attending these centers after screening tests are performed. Since there are no specialized training programs for genetic counselors, genetic counseling is generally provided by doctors or medical geneticists. The aim of this paper is to give an overview of the genetic screening services provided in Turkey, the prevalence of genetic diseases and the design of intensive educational programs for health professionals.     

Using Video Feedback to Improve Martial Arts Performance

This study used video feedback to enhance the martial arts performance of capoeira, an Afro‐Brazilian martial art that utilizes acrobatic movements (revesado, au de costa, and macaco). A multiple baseline across behaviors was used for five participants where baseline conditions consisted of standard coaching. The intervention consisted of video feedback, in which the participants were filmed attempting a movement and immediately viewed the video afterwards, while receiving positive and corrective feedback from the instructor. The target behaviors were scored on a 15‐item checklist, resulting in a percentage correct. A second video feedback condition similar to the first was also introduced to some participants, in which participants practiced the movements with live feedback before being filmed again. Results show that the video feedback conditions increased performance over baseline in most cases. Copyright © 2015 John Wiley & Sons, Ltd.     

Combining Patient Utility with Health Status Assessment to Improve Medical Decision Making

Physicians often use health status assessment tools to evaluate a patient's condition, then apply established guidelines to determine the most medically effective treatment. Yet additional criteria, such as the appropriateness of the treatment given the particular patient's preferences and attitude toward risk, are also highly relevant to quality care. While such preferences could be addressed via patient utility functions, their use in actual practice is somewhat limited because elicitation is often considered too burdensome for patients, unreliable, or redundant given other measures. For a small group of real patients who have suffered a stroke, we measure both traditional health status and patient utility for the current state to determine whether limited, focused utility assessment is a practical means of obtaining additional and relevant patient information. We find that utility assessment is perceived as reasonable and useful by patients, even when quite ill, and that utilities and health status are not redundant. In fact, investigating apparent inconsistencies between patient utility and observed health status can alert the physician to patient concerns and criteria not captured by more traditional measures. We propose an approach to medical decision making that uses both measures to improve patient–physician communication.     

Development of Genetic Counseling Services in Taiwan

Taiwan is an emerging industrial country in subtropical Asia with a population of 23 million. There were around 200,000 newborns in 2011. Delayed first marriage, low birth rate, and rapid aging are major demographic issues. Genetic counseling services were established following the rapid introduction of genetic technology and enactment of relevant laws and regulations. Ultrasound was first used in 1968 to examine pregnant women. The first amniotic fluid laboratory was founded in 1981 to identify chromosomal abnormalities. In 1984, the Genetic Health Act was legislated for prevention and control of genetic disorders, and the metabolic disorder screen project was launched. National Health Insurance with overall coverage of prenatal examinations was established in 1995. A master-level genetic counseling program was launched in 2003 and by 2011 has graduated eighty students. Two professional societies have been formed to certify genetic counselors, and 66 professionals have been certified. In summary, genetic counseling services in Taiwan are continuously improving.     

Using Questions to Improve Informed Consent Form Reading Behavior in Students

Previous research shows that students often do not read informed consent forms to understand their rights (Pederson, Neighbors, Tidwell, & Lostutter, 2011). Four hundred fifty-eight students participated in an advertised temperament study that actually measured whether they noticed a manipulation within the consent form. Answering five questions about the form raised the percentage of students noticing the manipulation in multiple settings; however, overall rates were low. Fewer than 10% of ethnic minority students noticed the manipulation. If the goal of consent forms in higher education remains an informed decision, these results indicate the need for increased interaction within the consent process.     

医学遗传服务与遗传学研究的伦理问题

遗传工程的分子技术于本世纪７０年代问世。这一技术的创新使人类与医学遗传学突飞猛进,由此导致遗传医学的飞速发展。与此同步,医学伦理学兴起,临床医学遗传服务与遗传学研究的伦理问题日益成为人文科学关注的核心。世界卫生组织（ＷＨＯ）于１９９７年发布的《医学遗传学与遗传服务伦理问题的建议国际准则》。探讨我国医学伦理学发展的策略和面临的挑战,祈盼适合我国国情的中华医学遗传服务与遗传学研究的伦理准则早日问世。     

Using Quality of Life to Assess Performance in the Disability Services Sector

Measurement of performance is extremely important for not-for-profit agencies in terms of measuring the efficiency and effectiveness of agencies in achieving their goals. Performance indicators assist managers of agencies in strategic decision making and in fulfilling their accountability obligations for the best use of limited resources. This paper argues that not-for-profit agencies that serve people with intellectual disabilities can use quality of life as one measure of agency and/or program performance. This is demonstrated with reference to research conducted on the effect of different methods of employment on the quality of life for people with intellectual disabilities. Effectiveness of agencies and/or programs can be assessed based on comparisons of quality of life outcomes under different methods of employment or by reference to absolute percentage of scale maximum scores and whether homeostasis is defeated.     

Genetic Counseling Services and Training of Genetic Counselors in Israel: An Overview

Genetic counseling services have existed in Israel since 1964 and are available in almost all the major hospitals. Given the socialized healthcare system and small country size, genetic services are generally accessible and often free. The existence of founder mutations in various communities in Israel makes genetic testing easier to perform. Yet, the ethnic, cultural and religious diversity of the population has major implications on the design of the screening programs and the use of genetic services. The Israeli Association of Genetic Counselors (IAGC) was established in 2008 and had existed informally since 1989. There are two Master level genetic counseling training programs (6 students/class, 2 year program): Hebrew University-Hadassah Medical School (established in 1997) and the Technion (established in 2009). Genetic counselors’ clinical training is largely observational and 2 years of supervised counseling sessions post degree are required for board exam eligibility. Genetic counselors are licensed and lead counseling sessions individually, but currently must work under medical geneticist supervision. This is the first article to summarize the history and training of Master level genetic counselors in Israel. Genetic services, coverage and regulations are also described.     

Using Explicit Case Formulation to Improve Cognitive Processing Therapy for PTSD

We investigated the utility of explicit case formulation (CF) within Cognitive Processing Therapy (CPT) for individuals with posttraumatic stress disorder (PTSD). An uncontrolled pre-posttreatment design was used. Participants attended 12–16 weekly sessions of CPT with explicit CF, where CF guided treatment length and treatment components. Treatment was completed by 19 of the 23 participants who started therapy. Results revealed significant reductions in PTSD and depression severity as well as unhelpful PTSD-related beliefs from pre- to posttreatment (ds between 1.10 – 1.92) and treatment gains were maintained at 3-month follow-up. Of the participants available at posttreatment for assessment, 69% (n = 11/16) met good end-state functioning for PTSD and 62% (n = 8/13) did so at follow-up. Finally, 72% (n = 13/18) of those interviewed at posttreatment no longer met criteria for PTSD and this was found for 93% of those assessed at follow-up (n = 14/15). Treatment, and CF in particular, was found to be acceptable by participants. Explicit case formulation did not interfere with positive outcomes of Cognitive Processing Therapy for PTSD. Further clinical implications and future directions for research are discussed.