Should Genetic Testing be Offered for Children? The Perspectives of Adolescents and Emerging Adults in Families with Li-Fraumeni Syndrome.

Whether children should be offered genetic testing for cancer risk is much debated but young voices are rarely heard in these conversations. The current study explored perspectives of genetic testing held by adolescents and emerging adults in families with Li Fraumeni syndrome (LFS). Twelve 12- to 25-year-olds in families with LFS completed qualitative interviews for this study. All believed that testing should be offered for children but many qualified this statement saying parental approval would be needed and testing should be optional. Genetic testing was seen as way to learn of risk status, allow for disease prevention efforts, and reduce uncertainty and anxiety. Perceived disadvantages included negative emotions associated with the testing result. Participants generally felt that children should be involved in the testing decision, but that parents could unilaterally decide to have a child tested in certain circumstances (e.g., young age, high risk). All who were aware of having been tested and of their test result (n = 7; 4 positive) said testing had no negative impact on their outlook and they agreed with the decision to undergo testing. Implications of these findings for clinical practice and future research are discussed.

Using body mass index to identify overweight children: barriers and facilitators in primary care.

OBJECTIVE: Overweight is an increasingly prevalent pediatric health problem but is underdiagnosed. Despite recommendations endorsing the use of body mass index (BMI) to identify overweight children, clinicians seldom use BMI. Barriers to the use of BMI in pediatric primary care have not previously been described. We used qualitative data to determine providers' familiarity with and attitudes toward recommendations for identifying overweight children and the perceived barriers and facilitators to use of BMI. METHODS: We conducted 6 focus groups involving a total of 38 providers (pediatricians, family physicians, physician assistants, and nurse practitioners) in private practices (n = 3), academic medical centers (n = 2), and a community health center (n = 1). RESULTS: Providers described lack of familiarity and agreement with BMI screening recommendations and skepticism about treatment effectiveness. Reported practice-level barriers to BMI use included lack of access to BMI charts and accurate height/weight data. In one practice, providers used an electronic medical record (EMR) system that automatically included BMI and described this EMR as a facilitator of BMI use. CONCLUSIONS: Practice-level changes such as incorporating BMI into office systems and EMRs may be needed to support pediatric primary care providers in using BMI routinely. To increase use of BMI and early identification of overweight, educational interventions that address individual providers' concerns about screening recommendations and treatment effectiveness may also be necessary.

Routine physical examination and forgone health care among Latino adolescent immigrants in the United States.

Knowledge concerning patterns of health care utilization among Latino-adolescent immigrants is needed to develop culturally-appropriate programs. The objectives of this study were to estimate the annual prevalence of having had a routine physical exam and episodes of adolescents' not seeking health care when they thought they should (forgone health care) among Latino adolescents by immigrant-generational status. Cross-sectional analysis of data from Latino adolescents in Wave I of the National Longitudinal Adolescent Health Study. First-generation immigrants who had lived in the U.S. < or = 5 years were less likely to receive routine care than third-generation immigrants (39.0% vs. 54.9%). This disparity decreased after adjustment for insurance status, parental education and poverty among Mexican origin adolescents. On average, 16.0% of first-generation immigrants who had lived in the U.S. < or = 5 years and 22.5% of third-generation immigrants reported forgoing health care. After adjustment for age, insurance status, parental education and routine care, recent arrivals were less likely than third-generation immigrants to forgo health care. Recent arrivals were less likely to receive a routine physical exam and to forgo care than third-generation immigrants. Future studies should explore the effect of acculturation on knowledge, beliefs and perceptions about health, illness and care-seeking behaviors.

Disparities in routine physical examinations among in-school adolescents of differing Latino origins.

PURPOSE: To estimate the prevalence of routine physical examination among in-school adolescents of differing national Latino origins and to assess associations with gender, age, immigrant generational status, language spoken at home, parental education, poverty level, family structure, and insurance status. METHODS: Cross-sectional analysis of Wave I of the National Longitudinal Study of Adolescent Health conducted during 1995. Our sample was limited to adolescents in grades 7 through 12 of Mexican (n = 1657), Cuban (n = 490), Puerto Rican (n = 555), and Central/South American or Dominican (C/S American or DR) (n = 427) origins. We used multivariate logistic regression for survey data to conduct the data analyses. RESULTS: Mexican-origin adolescents were less likely to report a routine physical examination in the previous year, compared with other Latino populations [prevalence (95% confidence interval)]: Mexicans, 47.7 % (42.0% -53.6%], Cubans 67.6% (57.4%-76.4%), Puerto Ricans 65.2% (58.4%-71.4%), and C/S American or DR (57.0% [47.3-66.2]). Among Mexican-origin adolescents, having a college-educated parent or insurance was associated with receiving care (adjusted prevalence odds ratio [95% confidence interval]), 2.12 (1.37-3.30) and 1.80 (1.31-2.47), respectively. For Cuban-origin adolescents, first-generation immigrants were less likely to receive care (0.31 [0.14-0.70]), and those living in a single-parent home were more likely to receive care (2.83 [1.52-5.25]). Having a routine physical examination among adolescents of C/S American or DR origins was associated with incomes above the poverty level (2.29 [1.10-4.77] and insurance (2.33 [1.10-4.91]). CONCLUSIONS: Reflecting the heterogeneity of Latino adolescents, the prevalence of routine physical examination and factors associated with it varied by national origin subgroup. These differences should be considered when developing strategies to better address the health needs of Latino youth.

The WISEWOMAN projects: lessons learned from three states.

BACKGROUND: The WISEWOMAN program provides chronic disease risk factor screening, lifestyle interventions, and referrals to financially disadvantaged women who participate in the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). Three states (Arizona, Massachusetts, and North Carolina) participated in Phase One (1995-1998). METHODS: Using a case study approach, we reviewed documents and conducted telephone interviews to compare the three projects' design and execution. The interviews, carried out in mid-2002, involved a convenience sample of project coordinators, project directors, researchers, and one CDC project officer (n = 9). RESULTS: Many providers were overwhelmed by WISEWOMAN's research component and disliked its lack of flexibility. Researchers emphasized that high-quality evaluation requires resources and attention. Informants described the challenges of integrating WISEWOMAN with state BCCEDP programs that are in varying development stages and recommended changes in organizational culture and provider practices. Regarding implementation, informants emphasized the need for adequate and appropriate planning, buy-in, training, professional support, and outreach. Our sample also noted that WISEWOMAN projects tend to be labor intensive. CONCLUSIONS: WISEWOMAN projects face challenges of integrating clinical and lifestyle interventions, reaching beyond a focus on individuals, marshaling substantial resources, and introducing complex interventions into stretched healthcare environments. The three Phase One projects were deemed successful in reaching underserved women, developing a more comprehensive women's health model, strengthening linkages to primary healthcare, experimenting with innovative behavioral interventions, and tapping into women's roles as social support providers and family/community gatekeepers.

Young adults' attitudes, beliefs, and feelings about testing for curable STDs outside of clinic settings.

The purpose of this paper was to elicit attitudes, beliefs, and feelings about testing for curable STDs outside of clinic settings. Telephone interviews were conducted with 120 black, Latino, and white young adults aged 18 to 25 years. Data were analyzed with descriptive frequencies and content analyses. Most (73%) reported people their age would use self-test urine STD kits if available. Perceived advantages were privacy and convenience. Disadvantages included not having an immediate "face-to-face" discussion with a medical professional about positive tests. Young adults report a range of attitudes, beliefs, and feelings that may influence the success of efforts to screen for curable STDs in nonclinic settings.

Testing for chlamydial and gonorrheal infections outside of clinic settings: a summary of the literature.

BACKGROUND: Nucleic acid amplification tests (NAATs) provide new technology that makes it feasible to initiate testing for Chlamydia trachomatis (CT) and Neisseria gonorrhoeae (GC) infection outside of clinic settings. METHODS: We summarized the English-language literature describing chlamydial or gonorrheal testing with self-collection of urine or vaginal specimens outside of clinic settings in developed countries published between January 1995 and August 2002. RESULTS: Testing for CT or GC infection has been initiated in school, community, and home settings. Purposes include screening of asymptomatic populations, improving quality of clinic-based health care, and research. Challenges include defining and reaching target populations, overcoming logistic issues, developing communication and counseling strategies, and determining whether alternative testing strategies are effectively reducing infection rates. CONCLUSIONS: The use of NAATs to detect CT and GC infection outside of clinic settings will undoubtedly continue. Future research should focus on how to best use this technology to reduce rates of infection.