Preconceptional family health evaluation: A regional education program for family planning clients and health professionals

The Preconceptional Family Health Evaluation Program was a regional project developed and funded for 2 years by the New England Regional Genetics Group (NERGG) to educate family planning health professionals about genetics, and to offer family planning clients preconceptional identification of genetic and environmental exposure risks. To meet these goals, genetic education was provided on a regional basis to 45 family planning professionals. A self-administered family health risk questionnaire adaptable to individual family planning settings was developed. Five hundred and twenty-nine family planning clients voluntarily completed the questionnaire. Cigarette smoking (35%) and alcohol use (57%) were two major categories of risks identified. The Preconceptional Family Health Evaluation Program was well received by all participants and provided an effective means for regional education of family planning health professionals. As a result of the program, state program planners, clinical genetics services, and family planning health professionals developed a strong relationship that will serve future educational and genetic risk screening efforts.     

A Spanish-language prenatal family health evaluation questionnaire: Construction and pilot implementation

The Family Planning Council of America has constructed and implemented a genetic history questionnaire, the Family Health Evaluation, to elicit risk factors, to increase clients' knowledge about reproductive choices, and to improve access to genetic services. The objective of the present study was to develop and implement a Spanish-language version of the Family Health Evaluation for data collection and risk assessment. The content of the Family Health Evaluation was modified to more clearly reflect the risks, exposures, and medical needs of an Hispanic, largely Mexican-American, population. In the present study, the questionnaire was administered to women presenting for prenatal care. The data collected in this pilot study indicate that the questionnaire is effective in identifying individuals and families who would benefit from receiving additional information about a medical condition in their families, from genetic counseling or from a referral for high-resolution ultrasound or other diagnostic procedures.     

An Assessment of Ethnocultural Beliefs Regarding the Causes of Birth Defects and Genetic Disorders

With the expansion of genetic services to various cultural groups, genetic counselors encounter clients who hold diverse beliefs inscribed by their culture about health conditions. Thus, clients may attribute the cause of a birth defect or genetic condition to a culturally-based health belief. This present study was conducted as a pilot study in order to assess the beliefs about the causes of birth defects and genetic disorders held by women of different ethnocultural backgrounds. This study proposed that women who do not have a family history of a disorder will differ in their knowledge about the cause of a birth defect or genetic disorder compared to women who have an affected child. In addition, this study determined to what extent culturally-based health beliefs are attributed to being the cause of a birth defect or genetic disorder in the 1990s.     

The future of genetics in public health

During the 1980s, we have witnessed an erosion in federal and state funding for the coordination of genetic services in state health departments. As this decade begins, the federal budget for the support of the national genetics program is less than half of the total available in 1980. In addition, priorities in state maternal and child health programs have changed, and genetic services have often received lower rankings aside of programs to improve prenatal care and to address problems such as teenage pregnancy. Clearly we are at a critical point for the future of genetics programs in the public health arena. Fortunately, despite the problems with funding and priority setting, important coalitions have been built during the past decade and continued advances in medical genetics have made it difficult for public health officials to ignore the potential impact of genetic services. Council of Regional Networks for Genetic Services (CORN) and the regional genetic services networks have provided opportunities for interaction and coordination between genetic services providers and public health officials that had not been available to any significant extent. The full potential of these coalitions has yet to be realized, but efforts in data collection, development of national guidelines and standards, and information sharing and networking have already had an influence on state genetic services programs. Continuing research on the genetics of chronic diseases and the influence of discoveries in molecular genetics will undoubtedly broaden the current scope of state public health programs in genetics, which all too often have been limited to newborn screening and administration of grants for genetic services. The regional and national genetic services programs should be strengthened and appropriate training programs should be developed in Schools of Public Health to provide the expertise and leadership that will be needed to guide the future of genetics in public health.     

Clinical Characterization and Risk Profile of Individuals Seeking Genetic Counseling for Hereditary Breast Cancer in Brazil

Hereditary breast cancer (HBC) accounts for 5–10% of breast cancer cases and it significantly increases the lifetime risk of cancer. Our objective was to evaluate the sociodemographic variables, family history of cancer, breast cancer (BC) screening practices and the risk profile of cancer affected or asymptomatic at-risk women that undergo genetic counseling for hereditary breast cancer in public Brazilian cancer genetics services. Estimated lifetime risk of BC was calculated for asymptomatic women using the Gail and Claus models. The majority of women showed a moderate lifetime risk of developing BC, with an average risk of 19.7% and 19.9% by the Gail and Claus models, respectively. The average prior probability of carrying a BRCA1/2 gene mutation was 16.7% and overall only 32% fulfilled criteria for a hereditary breast cancer syndrome as assessed by family history. We conclude that a significant number of individuals at high-risk for HBC syndromes may not have access to the benefits of cancer genetic counseling in these centers. Contributing factors may include insufficient training of healthcare professionals, disinformation of cancer patients; difficult access to genetic testing and/or resistance in seeking such services. The identification and understanding of these barriers is essential to develop specific strategies to effectively achieve cancer risk reduction in this and other countries were clinical cancer genetics is not yet fully established.     

Breast Cancer Genetics Knowledge and Testing Intentions among Nigerian Professional Women

Genetic testing services for breast cancer are well established in developed countries compared to African populations that bear a disproportionate burden of breast cancer (BC). The objective of this study is to examine the knowledge of professional Nigerian women about BC genetics and their intentions to utilize genetic testing services when it is made available in Nigeria. In this study, 165 lecturers and 189 bankers were recruited and studied using a validated self-administered questionnaire. The respondents’ mean age was 34.9 years (SD?=?10.9), 6.5% had family history of BC, and 84.7% had limited knowledge of breast cancer genetics. The proportion of women with genetic testing intentions for breast cancer was 87.3%. Health care access (OR?=?2.35, 95% CI, 1.07–5.13), religion (OR?=?3.51, 95% CI, 1.03–11.92), and perceived personal risk if a close relative had breast cancer (OR?=?2.31, 95% CI, 1.05–5.08) independently predicted testing intentions. The genetic testing intentions for BC were high despite limited knowledge about breast cancer genetics. Promotion of BC genetics education as well as efforts to make BC genetic testing services available in Nigeria at reduced cost remains essential.     

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.     

Non-binary youth: Access to gender-affirming primary health care

ABSTRACT

Background: Transgender (trans) youth who identify outside the gender binary are a growing subpopulation. In this article, we document differences in access to gender-affirming health care between binary and non-binary identified trans youth and explore ways of meeting the health needs of non-binary youth within primary care settings.

Methods: The Canadian Trans Youth Health Survey is a national online survey of trans youth, 14–25 years, conducted in 2013–2014. Among the 839 participants who responded to gender identity items in the survey, 41% identified as non-binary. We compared demographic, health outcome, and health care access responses between non-binary and binary (trans girls/women and trans boys/men) youth.

Results: Non-binary and binary youth were similar in most demographics, including age, geographic distribution, and ethnocultural backgrounds, however a larger proportion (82%) of non-binary youth were assigned female at birth. Older non-binary youth (aged 19–25) were significantly more likely to forego needed healthcare than older binary youth; no significant differences were found between younger (14–18) non-binary and binary youth in foregoing healthcare. Overall, non-binary youth (13%) were significantly less likely than binary youth (52%) to access hormone therapy, but they were more likely than binary youth to report experiencing barriers to accessing hormone therapy when needed.

Conclusions: Non-binary trans youth in Canada report challenges in accessing needed gender-affirming healthcare. Primary care providers are well-situated to integrate a broad range of gender-affirming care services into practice in order to address the unique needs of non-binary youth. Future research is warranted to explore experiences of non-binary youth related to barriers to care and to explore how services can be designed and delivered to better meet the needs of non-binary youth seeking gender-affirming primary care.     

Gender Awareness Inventory-VA: A Measure of Ideology,Sensitivity, and Knowledge Related to Women Veterans' Health Care

Within the Veterans Health Administration, it has become increasingly important to assess health-care workers' attitudes toward and beliefs about female patients, sensitivity to the unique needs of female patients, and knowledge about women veterans and the programs and services available to them. The current study describes the development of the Gender Awareness Inventory-VA, an instrument that assesses 3 components: gender-role ideology, gender sensitivity, and knowledge among health-care staff. Data were drawn from various samples of Veterans Health Administration employees in a large geographical region (overall N > 1,100; nationally, this population includes roughly 37% minorities). In a series of psychometric inquiries, evidence for reliability and validity was established, and preliminary evidence was provided for the instrument's underlying factor structure.     

Determinants of Children's Primary Health Care Use

We review factors that influence children's use of primary health care services. Predictors of pediatric health care use include child health status, child mental health, parent and family functioning, demographic characteristics, and access to health care services. Health services research is marked by inconsistencies due to varying approaches to measurement, population sampling, and analysis, and models that do not incorporate situational factors. We present recommendations for practicing clinicians and discuss suggestions for future research to help identify additional factors that may influence a parent's decision to seek help from pediatric physicians. Health care use is determined by multiple factors, and complex models will lead to improved strategies for maximizing health status and establishing optimal pediatric care.     

Delivering Genetic Education and Genetic Counseling for Rare Diseases in Rural Brazil

Brazil is the largest country in Latin America, with an ethnically diverse, Portuguese-speaking and predominantly Roman Catholic population of some 194 million. Universal health care is provided under the Federal Unified Health System (Sistema Único de Saúde) but, as in many other middle and low income countries, access to medical genetics services is limited in rural and remote regions of the country. Since there is no formally recognized Genetic Counseling profession, genetic counseling is provided by physicians, trained either in medical genetics or a related clinical discipline. A comprehensive medical genetics program has been established in Monte Santo, an inland rural community located in the state of Bahia in Northeast Brazil, with high prevalences of a number of autosomal recessive genetic disorders, including non-syndromic deafness, phenyketonuria, congenital hypothyroidism and mucopolysaccharidosis VI (Maroteaux-Lamy syndrome). Genetic education, counseling and treatment are locally provided, with a neonatal screening program for MPSVI currently under trial.     

Adolescent Satisfaction with School-Based Mental Health Services

Examining adolescents' satisfaction with mental health services is an important program evaluation activity. Their perceptions of whether services were beneficial and resulted in improved functioning are indices of treatment quality. Assessment of adolescent satisfaction with school-based mental health programs has been limited. In our study, adolescents receiving services from a School Mental Health Program (SMHP) completed satisfaction surveys. Participants were predominantly minority youth residing in an urban area. Results indicated that students were highly satisfied with their mental health services. Students valued the therapeutic relationship, catharsis associated with therapy, and skills they learned during therapy. Several factors influenced satisfaction ratings including clinician training and availability.     

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.     

Marketing Psychology at Academic Health Centers

The administrative structure of academic health centers is reviewed, with a view to understanding the issues of marketing psychological services within that setting. The slow changes at academic health centers to new practice styles requires psychology to formulate a market strategy addressing the traditional specialist model and another plan responsive to the emerging model emphasizing primary care. Market targets for psychologists include administration, physicians, and patients. Presently, the Association of Medical School Psychologists is working with the Association of Academic Health Centers to design a marketing program targeting leaders at academic health centers.     

How to Fix Peer Review: Separating Its Two Functions—Improving Manuscripts and Judging Their Scientific Merit—Would Help

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.Reprinted with permission from The Scientist. Originally published in the June 6, 2005 issue of The Scientist (www.the-scientist.com).     

Providers’ Perceptions and Practices Regarding <Emphasis Type="BoldItalic">BRCA1/2</Emphasis> Genetic Counseling and Testing in African American Women

We examined healthcare providers’ perceptions of genetic counseling and testing in African American women at moderate to high-risk of carrying a BRCA1/2 mutation. We conducted 20 in-depth interviews with genetic counselors (n = 5), medical oncologists (n = 8), obstetrician/gynecologists (n = 2) and surgeons (n = 5). Interviews were audiotaped, transcribed and independently coded by two individuals using a content analysis approach. Seven themes emerged relevant to providers’ perceptions of African American women’s use of BRCA1/2 genetic services: access factors, cultural beliefs and preferences, effects of testing, patient motivators for genetic counseling and testing, patient-provider communication, reasons for provider referral, and reasons for patient refusal. Providers identified individual- and system-level barriers to African American women’s use of genetic services, including lack of follow-up after referrals to genetic specialists and challenges to obtaining financial coverage for under- and uninsured high-risk women. Results have implications for physician and patient education regarding appropriate referrals to and uptake of genetic services in at-risk African American women.     

Gender congruence and body satisfaction in nonbinary transgender people: A case control study

Abstract

Background: Binary transgender people access gender affirming medical interventions to alleviate gender incongruence and increase body satisfaction. Despite the increase in nonbinary transgender people, this population are less likely to access transgender health services compared to binary transgender people. No research has yet understood why by exploring levels of gender congruence and body satisfaction in nonbinary transgender people.

Objective: The aim of this study was to compare levels of gender congruence and body satisfaction in nonbinary transgender people to controls [binary transgender people and cisgender (nontrans) people].

Method: In total, 526 people from a community sample in the UK took part in the study (97 nonbinary, 91 binary, and 338 cisgender identifying people). Participants were asked to complete an online survey about gender congruence and body satisfaction.

Results: There were differences in gender congruence and body satisfaction between nonbinary and binary transgender people. On sex-specific parts of the body (i.e., chest, genitalia, and secondary sex characteristics), nonbinary transgender people reported significantly higher levels of gender and body satisfaction compared to binary transgender people. However, there was no difference in congruence and satisfaction with social gender role between the two transgender groups (nonbinary and binary). Cisgender people reported significantly higher levels of gender congruence and body satisfaction compared to transgender people (nonbinary and binary).

Conclusions: There are differences in gender congruence and body satisfaction between nonbinary and binary transgender people. Nonbinary individuals may be less likely to access transgender health services due to experiencing less gender incongruence and more body satisfaction compared to binary transgender people. Transgender health services need to be more inclusive of nonbinary transgender people and their support and treatment needs, which may differ from those who identify within the binary gender system.     

Communication about DTC Testing: Commentary on a ‘Family Experience of Personal Genomics’

This paper provides a commentary on ‘Family Experience of Personal Genomics’ (Corpas 2012). An overview is offered on the communication literature available to help support individuals and families to communicate about genetic information. Despite there being a wealth of evidence, built on years of genetic counseling practice, this does not appear to have been translated clearly to the Direct to Consumer (DTC) testing market. In many countries it is possible to order a DTC genetic test without the involvement of any health professional; there has been heated debate about whether this is appropriate or not. Much of the focus surrounding this has been on whether it is necessary to have a health professional available to offer their clinical knowledge and help with interpreting the DTC genetic test data. What has been missed from this debate is the importance of enabling customers of DTC testing services access to the abundance of information about how to communicate their genetic risks to others, including immediate family. Family communication about health and indeed genetics can be fraught with difficulty. Genetic health professionals, specifically genetic counselors, have particular expertise in family communication about genetics. Such information could be incredibly useful to kinships as they grapple with knowing how to communicate their genomic information with relatives.     

Interdivisional Healthcare Committee: Speaking with One Voice on Cross-Cutting Issues in Health Care Psychology

One of the greatest challenges facing psychology in health settings today is the need for unification on critical issues of client access, workforce oversupply, education and training, and outcomes evalutions. Health care psychology specialty areas can no longer afford to operate in parallel. A unified vision is needed to overcome threats to the viability of the profession and to maximize the potential for achieving common goals. The current paper describes the formation of the Interdivisional Healthcare Committee (IHC), whose purpose is to establish a common agenda for promoting the professional, educational, and scientific goals of health care psychology. The IHC's initiative to develop new CPT codes for increasing access to psychologists' services in health care settings is outlined.