Transition Navigator Intervention Improves Transition Readiness to Adult Care for Youth With Sickle Cell Disease.

OBJECTIVE: Adolescents and young adults (AYA) with sickle cell disease (SCD) experience high rates of acute care utilization and increased morbidity. At this high-risk time, they also face the need to transition from pediatric to adult services, which, if poorly coordinated, adds to heightened morbidity and acute care utilization. The study objective was to characterize the feasibility, acceptability, and short-term efficacy of a protocolized transition navigator (TN) intervention in AYA with SCD. METHODS: We developed a protocolized TN intervention that used ecological assessment and motivational interviewing to assess transition readiness, identify goals, and remove barriers to transition, and to provide disease and pain management education and skills to AYAs with SCD. RESULTS: Ninety-three percent (56/60) of enrolled individuals completed the intervention. Participation in the TN program was associated with significant improvement in mean transition readiness scores (3.58-4.15, P < .0001), disease knowledge scale (8.91-10.13, P < .0001), Adolescent Medication Barriers Scale (40.05-35.39, P = .003) and confidence in both disease (22.5-23.96, P = .048) and pain management (25.07-26.61, P = .003) for youth with SCD. CONCLUSION: The TN intervention was acceptable to youth with SCD, feasible to implement at an urban academic medical center, and addressed barriers to transition identified by the youth. Longer-term assessment is needed to determine if the TN intervention improved successful transfer to and retention in adult care.

Rising Mental Health Incidence Among Adolescents in Westchester, NY.

CONTEXT: Many governments have publicly released healthcare data, which can be mined for insights about disease conditions, and their impact on society. METHODS: We present a big-data analytics approach to investigate data in the New York Statewide Planning and Research Cooperative System (SPARCS) consisting of 20 million patient records. FINDINGS: Whereas the age group 30-48 years exhibited an 18% decline in mental health (MH) disorders from 2009 to 2016, the age group 0-17 years showed a 5.4% increase. MH issues amongst the age group 0-17 years comprise a significant expenditure in New York State. Within this age group, we find a higher prevalence of MH disorders in females and minority populations. Westchester County has seen a 32% increase in incidences and a 41% increase in costs. CONCLUSIONS: Our approach is scalable to data from multiple government agencies and provides an independent perspective on health care issues, which can prove valuable to policy and decision-makers.

Evaluation of Pediatric Human Papillomavirus Vaccination Provider Counseling Written Materials: A Health Literacy Perspective.

BACKGROUND AND OBJECTIVES: Despite recommendations supporting human papillomavirus (HPV) vaccination, pediatric vaccination rates remain suboptimal in the United States; lack of tools to support provider counseling is one barrier. We sought to evaluate HPV-related counseling materials for readability, suitability, and content, and assess parent perceptions of materials, using a health literacy perspective. METHODS: A systematic search was conducted for written materials developed for HPV vaccination counseling by examining state Department of Health Web sites and associated links to local and national organizations. Materials were assessed for the following: 1) readability (Flesch Reading Ease, Flesch-Kincaid, Gunning Fog, Simple Measure of Gobbledygook, Fry), 2) suitability (understandability and actionability) (Suitability Assessment of Materials; Patient Education Materials Assessment Tool for Printable Materials), and 3) coverage of 8 key content areas (recommended by Centers for Disease Control and Prevention). Semistructured interviews were conducted with English-speaking parents or caregivers of children 9 to 17 years of age from 3 pediatric clinics (New York, Ohio, Illinois) serving predominantly low-income families to assess perceptions and usefulness of 4 handouts selected for review. RESULTS: Thirty-eight documents were assessed. Mean ± standard deviation (SD) reading grade level was 9.4 ± 2; 10.5% (n = 4) had a reading level of 6th grade or below; 68.4% (n = 26) were considered not suitable. Mean understandability was 41.7% and mean actionability was 20.7%. Only 5.3% (n = 2) addressed all 8 content areas mean ± SD (number of areas = 6.7 ± 1.2). Brochure comprehensiveness and inclusion of a personal story were cited as factors that would be helpful in influencing parents to vaccinate against HPV. CONCLUSIONS: Few written materials for HPV vaccination counseling were optimal from a health literacy best practices perspective. Content comprehensiveness was important for informed decision making.

Description of Sexual Orientation and Sexual Behaviors among High School Girls in New York City.

STUDY OBJECTIVE: Examination of the association of sexual orientation to the sexual practices and health behaviors of high school girls in New York City (NYC). DESIGN, SETTING, AND PARTICIPANTS: Data were drawn from the 2013 Youth Risk Behavior Surveillance System survey of public high school students in grades 9-12 in NYC. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Independent variables included sexual orientation and gender of sexual partners. Dependent variables include sexual/health risk behaviors. We used t tests to compare mean ages and χ2 tests to compare distributions according to sexual orientation, gender of sexual partners, and differences in risk behaviors. RESULTS: The survey was completed by 4643 girls; mean age, 15.5 years; (1103 + 1842)/4254 (69%) black or Latina; 1101/4000 (27.5%) sexually active; 3574/4412 (81%) heterosexual; and (92 + 526)/4412 (14%) sexual minorities; 24.1% were heterosexual, 52.1% lesbian, and 49.4% were bisexual girls and were sexually active; 247 were classified as women who have sex with women (WSW) or WSW and men (WSWM). Of the sexually active girls, (65 + 182)/1081 (23%) were WSW/WSWM. The WSW/WSWM reported earlier sexual debut, more sexual partners, higher pregnancy rate, use of alcohol at last sex, history of intimate partner violence, and less likelihood of having an HIV test. CONCLUSION: Almost one in four of sexually active high school girls in NYC can be classified as WSW, who are vulnerable to increased sexual and health risk-taking behaviors leading to adverse health outcomes. The discordance between sexual behavior and sexual orientation emphasizes the importance of the provider sharing protective strategies in the sexual health counseling session for their patients who engage in sex with female partners regardless of sexual orientation.

Predictors of Early Discontinuation of Effective Contraception by Teens at High Risk of Pregnancy.

STUDY OBJECTIVE: In the United States, teen pregnancy rates are declining. However, the United States still has the highest teen pregnancy rate among high-income countries. Understanding factors that predict discontinuation of effective contraception might help to further decrease teen pregnancy. We aimed to assess predictors of early discontinuation of effective contraception during typical use by high-risk teens. DESIGN, SETTING, PARTICIPANTS, INTERVENTIONS, AND MAIN OUTCOME MEASURES: We recruited 145 women aged 13-20 years (mean, 17.7 ± 1.8 years); 68% (99/145) Hispanic; 26% (38/145) black; 14% (20/145) ever pregnant; and 4% (6/145) high school dropouts who chose an effective contraceptive method during a health care visit and we prospectively assessed use of the method after 6 months. Contraceptive choices of the 130 participants who were reassessed at 6 months (90% retention) were: intrauterine device (IUD), 26% (34/130); depot medroxyprogesterone acetate (DMPA), 8% (10/130); combined oral contraceptives (COCs), 48% (62/130); transdermal patch (Patch), 13% (17/130); and intravaginal ring (Ring), 5% (7/130). RESULTS: After 6 months, only 49 of 130 (38%) continued their chosen method; 28 of 130 (22%) never initiated the method; and 53 of 130 (40%) discontinued. Users and nonusers at 6 months did not differ according to cultural and/or social characteristics (age, ethnicity, acculturation, education, health literacy) but differed according to contraceptive method type. For the 102 of 130 who initiated a method, 88% continued use of the IUD, 20% DMPA, 43% COC, 17% Patch and Ring (P < .001). Using Cox proportional hazards multivariable analysis, compared with IUDs, all other methods predicted discontinuation: DMPA (hazard ratio [HR], 5.6; 95% confidence interval [CI], 1.2-26.7; P < .05); COCs (HR, 6.6; 95% CI, 1.8-25; P < .01); Patch and Ring (HR, 12; 95% CI, 3.0-48; P < .001). Discontinuation was also predicted by past use of hormonal contraceptives (HR, 1.9; 95% CI, 1.0-3.6; P < .05) and high school dropout (HR, 8.2; 95% CI, 1.6-41; P < .01). CONCLUSION: Contraceptive method type is the strongest predictor of early discontinuation; compared with IUDs, all other methods are 6-12 times more likely to be discontinued. Cultural and/or social characteristics, with the exception of school dropout, are of little predictive value. Increasing the use of IUDs by high-risk teens could decrease discontinuation rates and possibly teen pregnancy rates.

Barriers and facilitators to engagement of vulnerable populations in HIV primary care in New York City.

BACKGROUND: Engagement in HIV care helps to maximize viral suppression, which in turn, reduces morbidity and mortality and prevents further HIV transmission. With more HIV cases than any other US city, New York City reported in 2012 that only 41% of all persons estimated to be living with HIV (PLWH) had a suppressed viral load, whereas nearly three-quarters of those in clinical care achieved viral suppression. Thus, retaining PLWH in HIV care addresses this central goal of both the US National HIV/AIDS Strategy and Governor Cuomo's plan to end the AIDS epidemic in New York State. METHODS: We conducted 80 in-depth qualitative interviews with PLWH in 4 New York City populations that were identified as being inconsistently engaged in HIV medical care: African immigrants, previously incarcerated adults, transgender women, and young men who have sex with men. RESULTS: Barriers to and facilitators of HIV care engagement fell into 3 domains: (1) system factors (eg, patient-provider relationship, social service agencies, transitions between penal system and community), (2) social factors (eg, family and other social support; stigma related to HIV, substance use, sexual orientation, gender identity, and incarceration), and (3) individual factors (eg, mental illness, substance use, resilience). Similarities and differences in these themes across the 4 populations as well as research and public health implications were identified. CONCLUSIONS: Engagement in care is maximized when the social challenges confronted by vulnerable groups are addressed, patient-provider communication is strong, and coordinated services are available, including housing, mental health and substance use treatment, and peer navigation.

Pediatricians Transitioning Practices, Youth With Special Health Care Needs in New York State.

OBJECTIVE: To assess current practices of New York State pediatricians as they transition youth with special health care needs to adult-oriented medical care. METHODS: A survey of New York State pediatricians included 6 critical steps from 2002 consensus statement, 11 essential steps adapted from recent literature, and questions targeting age of starting transition and availability of transition policy. RESULTS: Of 181 respondents, only 11% have a transition policy. Most assist patients in transition process; identify an adult provider (92%); and create portable medical summary (57%). Only 3% start planning process at recommended age. No respondents are compliant with all 6 critical steps; subspecialists were more likely to report compliance to more than 4 steps. CONCLUSIONS: Participating pediatricians are making gains, yet effort is needed, to incorporate the essential steps into practice for transitioning youth with special health care needs. Recognition of barriers, use of electronic tools, and clarifying subspecialist's approach, may improve compliance with transition recommendations.

Barriers and facilitators of linkage to HIV primary care in New York City.

One in 5 people living with HIV are unaware of their status; they account for an estimated 51% of new infections. HIV transmission can be reduced through a "Test and Treat" strategy, which can decrease both viral load and risk behaviors. However, linkage of newly diagnosed HIV-positive persons to care has proved challenging. We report quantitative and qualitative data on linkage to care from HIV testing sites that partnered with the New York City Department of Health and Mental Hygiene to implement "The Bronx Knows" (TBK), an initiative that tested 607,570 residents over 3 years. During TBK, partner agencies reported the aggregate number of HIV tests conducted, the number of confirmed positives (overall and new), and the number of confirmed positives linked to medical care. We conducted qualitative interviews with directors of 24 of 30 TBK HIV testing agencies to identify linkage barriers and selected 9 for case studies. Barriers to linkage fell into 3 domains: (1) health care system factors (long wait for provider appointments, requirement of a positive confirmatory test before scheduling an appointment, system navigation, and disrespect to patients); (2) social factors (HIV stigma); and (3) characteristics of risk populations (eg, mental illness, homelessness, substance use, and immigrant). Best practices for linkage included networking among community organizations, individualized care plans, team approach, comprehensive and coordinated care services, and patient peer navigation. Research and public health implications are discussed.

Adolescents' views on barriers to health care: a pilot study.

OBJECTIVES: To determine from adolescents using health care their: 1) perceptions of barriers to obtaining health services, 2) views on how to overcome the barriers and 3) views on how to create an adolescent-friendly primary care practice. DESIGN: Six focus group interviews. METHODS: Adolescents 11-21 years old from three health centers in the Bronx were recruited. MAIN OUTCOME MEASURES: 1) barriers to accessing health care such as insurance, language barriers, transportation, making an appointment; 2) identifying barriers related to issues of consent and confidentiality; 3) exploring barriers to accessing mental health and related issues; and 4) their visions of an adolescent-friendly office. RESULTS: Thirty-one adolescents, aged 11-21 years old, participated. The majority were Hispanic and 52% were female. Fifty percent of adolescents had a routine visit within the past month. Most adolescents reported experiencing barriers to making an appointment. Additionally, they complained about long waiting times to be seen by providers on the day of their scheduled appointment. Another key barrier was related to knowledge and perceptions about consent and confidentiality. Further, in regard to mental health, many adolescents from focus groups reported that they felt that their primary providers had little interest in this topic and limited knowledge about it. Most of the adolescents reported no barriers with insurance, language or transportation. Their visions of an adolescent-friendly office would include a separate adolescent waiting area equipped with entertainment units. CONCLUSION: In this study of adolescents who already have primary care providers and are seemingly well-connected to the health care system, there remained significant reported barriers to accessing necessary health services.

Adaptation of an alcohol and HIV school-based prevention program for teens.

Given the current status of HIV infection in youth in India, developing and implementing HIV education and prevention interventions is critical. The goal for School-based Teenage Education Program (STEP) was to demonstrate that a HIV/AIDS and alcohol abuse educational program built with specific cultural, linguistic, and community-specific characteristics could be effective. Utilizing the Train-the-Trainer model, the instructors (17-21 years) were trained to present the 10 session manualized program to primarily rural and tribal youth aged 13-16 years in 23 schools (N = 1,421) in the northern state of Himachal Pradesh in India. The intervention had a greater impact on girls; girls evidenced greater communication skills and a trend towards greater self efficacy and reduced risk taking behavior. The STEP has been successfully adapted by the community organizations that were involved in coordinating the program at the local level. Their intention to continue STEP beyond extra funding shows that utilizing the local community in designing, implementing and evaluating programs promotes ownership and sustainability.

Differences among male/female adolescents participating in a School-based Teenage Education Program (STEP) focusing on HIV prevention in India.

INTRODUCTION: With the rising threat of HIV in India, youth are an important group to reach for prevention education. This pilot study tested the efficacy of STEP (School-based Teenage Education Program focusing on HIV Prevention) for school children. METHOD: This pilot study randomized 25 schools in Mumbai to receive STEP (N = 1846). We trained forty two undergraduates from local colleges to deliver the, (six-session) program over a six-week period to eighth graders (age 13-15 years). Outcome measures collected at six weeks were HIV knowledge, attitudes toward abstinence/condom use, peer pressure, and confidence in dealing with risky social situations. A repeated measures analysis of variance was conducted with pretest and posttest scores with knowledge, beliefs, attitudes, and confidence as the within-group measures and gender as the between-group measure. RESULTS: Both boys and girls significantly improved on knowledge, attitudes, and beliefs regarding HIV/AIDS and in their confidence level in dealing with risky behavior. However girls increased more on knowledge (P < .05), agreement with abstinence (P < .05), and agreement with condom use (P < .001). Girls had significantly less need to follow peers (P < .05), better understanding of precautions against HIV (P < .001), and a higher confidence level in dealing with risky social situations (P < .05). CONCLUSIONS: Overall, girls benefited more from the STEP intervention than boys. The literature documents strong gender disparities in HIV/AIDS knowledge, information sources, and consequences of sex for youth in India. However, more work is needed to define and document the reasons for the differences.

A study of knowledge, attitude, and sensitivity about HIV/AIDS among school teachers in northwestern Himalayas.

North India is considered a low knowledge and low prevalence setting according to the recent National AIDS Control Organization survey regarding HIV/AIDS. As more than one third of the population in India is young adults and adolescents, reaching and educating them is key for prevention programs and a healthier future. School systems provide an ideal situation to impart this awareness and reach adolescents and young adults. Logically, teachers are the ideal sources of imparting information. All schools are required to train some of their teachers in the national HIV/AIDS education training, and they in turn share this information and awareness with the adolescents in schools. However, not many teachers have the knowledge, appropriate attitude, and comfort level needed to impart this information to students. This paper will discuss results from our brief survey of teachers from public and the private schools in Himachal Pradesh in India that focused on the knowledge of HIV/AIDS, attitude toward people living with HIV/AIDS, and comfort in discussing these issues with students. A sample of 80 teachers (40 each from public and private schools) volunteered for the study. The findings revealed a significant difference between public and private school teachers in their knowledge level (t = 9.45, P < .001), their attitudes toward HIV/ AIDS (t = 16.77, P < .001), and their comfort level in discussing these issues (t = 12.65, P < .001). Implications of the study for teacher's training on HIV/AIDS and a proposed intervention are discussed.

Subjective and objective measures of socioeconomic status: predictors of cardiovascular risk in college students in Mumbai, India.

The relationship between socioeconomic status (SES) and health changes as a society develops. In developed countries, high SES is associated with better health, but in developing countries, high SES is associated with poorer health. However, measuring SES is difficult in countries like India, where the traditional class and caste system are interwoven and complex. The current study explored the relationship between subjective and objective indices of SES and between SES and the metabolic syndrome among Asian Indians residing in Mumbai, India. Participants were a subset of young adults (N = 112, median age 19 years, 24% male) who were part of larger study assessing psychosocial correlates of the metabolic syndrome. SES was assessed through objective (father's education) and subjective (SES ladder) indices. Data indicated that high subjective SES was correlated with fasting blood sugar (r = .28, P < .003), and father's education was correlated with high cholesterol (r = .32, P < .005). Subjective and objective indices of SES were also correlated with each other (r = .24, P < .04). These data reiterate that the link between SES and health is obvious from an early age, regardless of the measures used to assess SES. Given the complexity of assessing SES in developing countries, objective subjective indices should be used in assessing SES.

The Events in Care Screening Questionnaire (ECSQ): a new tool to identify needs and concerns of people with HIV/AIDS.

The purpose of this paper is to present validation data on the Events in Care Screening Questionnaire (ECSQ), which was designed to identify the needs and concerns of people living with HIV/AIDS (PLWHA) in nine specific domains: adherence to medical instructions; medical problems; specialty and inpatient hospital care; preventive health care and screening and behavioral health; sexual risk behavior; family planning; psychological symptoms; substance use; and life circumstances and demands. The ECSQ is the anchor for a more comprehensive measure called "The Dynamics of Care," and was administered in the context of a longitudinal study to evaluate New York State's HIV Special Needs Plan (HIV SNP), a Medicaid managed care model for PLWHA. Participants in the study, which began in March 2003 and closed recruitment in January 2007, were NYC PLWHA who were enrolled in either a Medicaid HIV SNP or Fee-For-Service plan. Participants were recruited through HIV SNP enrollment lists, direct on-site recruitment, and fliers. The specific event domains covered in the ECSQ were selected based on the purpose of the HIV SNP and the literature describing the needs and challenges that PLWHA face. Analyses are based on data from 628 study respondents over two times points. Results suggest that the concerns identified by PLWHA were largely consistent with their health care situation, heath status, risk behavior, and personal characteristics. Findings presented here lend support for the construct validity of the ECSQ and demonstrate its value as a starting point for inquiring more fully about the experiences of patients and improving the care they receive.

Beyond satisfaction: using the Dynamics of Care assessment to better understand patients' experiences in care.

BACKGROUND: Patient perceptions of and satisfaction with care have become important indicators of the quality of services and the relationship of services to treatment outcomes. However, assessment of these indicators continues to be plagued by measurement problems, particularly the lack of variance in satisfaction data. In this article, we present a new approach to better capture patient perceptions of experiences in care, the Dynamics of Care (DoC) assessment. It is an in-depth approach to defining and assessing patients' perspectives at different junctures in care, including their decisions about whether and where to seek care, the barriers encountered, and the treatments and services received. METHODS: The purpose of this article is to describe, validate, and discuss the benefits and limitations of the DoC, which was administered as part of a longitudinal study to evaluate the New York State HIV Special Needs Plan (SNP), a Medicaid managed care model for people living with HIV/AIDS. Data are from 426 study respondents across two time points. RESULTS: The results demonstrate the validity and value of the DoC. Help seeking decisions and satisfaction with care appear to be situation-specific, rather than person-specific. However, barriers to care appear to be more cross-situational for respondents, and may be associated with clients' living situations or care arrangements. Inventories in this assessment that were designed to identify potential deterrents to help seeking and difficulties encountered in care demonstrated clear principal component structures, and helped to explain satisfaction with care. The problem resolution index was found to be independent from satisfaction with care and the data were more normally distributed. DoC data were also associated with subsequent utilization and change in quality of life. CONCLUSION: The DoC was designed to be a flexible, integrated measure to determine individuals' salient service needs, help seeking and experiences in care. One of the many strengths of the assessment is its focus on specific problems in context, thus providing a more sensitive and informative way to understand processes in care from the patient's perspective. This approach can be used to direct new programs and resources to the patients and situations that require them.

Tobacco use and readiness to quit smoking in low-income HIV-infected persons.

The study aim was to identify covariates of smoking status and readiness to quit that encompassed key sociodemographic and health status variables, health-related quality of life, drug use and unprotected sex, and tobacco use variables in a cohort of low-income persons living with HIV. We also examined the impact of HIV diagnosis on smoking cessation. The sample (N = 428) was mostly male (59%) and Black (53%) or Hispanic (30%), and had a high school education or less (87%). Mean age was 40 years. Two-thirds of participants were current smokers, 19% former smokers, and 16% never smokers. Current smokers smoked a mean of 16 cigarettes/day for 22 years; 42% were in the precontemplation stage of readiness to quit smoking, 40% were contemplators, and 18% were in preparation. Most current smokers (81%) reported receiving medical advice to quit smoking. Multivariate logistic regression analyses indicated that current smokers, compared with former smokers, were more likely to use illicit drugs, perceive a lower health risk for continued smoking, and report less pain. Current smokers, compared with nonsmokers (former and never smokers), were more likely to report greater illicit drug use in their lifetime, current illicit drug use, and less pain. A multiple linear regression indicated that greater current illicit drug use, greater emotional distress, and a lower number of quit attempts were associated with lower stage of readiness to quit smoking. These findings confirm a high prevalence of smoking among HIV-infected persons and suggest a complex interplay among drug use, pain, and emotional distress that impact smoking status and, among smokers, readiness to quit. Tobacco control programs for HIV-infected persons should build motivation to quit smoking and address salient barriers to cessation--such as comorbid drug use, emotional distress, pain, and access to and coverage for treatment--and should educate smokers regarding the HIV-specific health benefits of cessation.

Construct validity of the posttraumatic stress disorder checklist in cancer survivors: analyses based on two samples.

The measurement of posttraumatic stress disorder (PTSD) is critically important for the identification and treatment of this disorder. The PTSD Checklist (PCL; F. W. Weathers and J. Ford, 1996) is a self-report measure that is increasingly used. In this study, the authors investigated the factorial validity of the PCL with data from 236 cancer survivors who received a bone marrow or stem cell transplantation. The authors examined the fit of these data with the clinical model of 3 symptom clusters for PTSD, as proposed in the Diagnostic and Statistical Manual of Mental Disorders, and alternative models tested in prior research. By using confirmatory factor analysis the authors found that a 4-first-order-factor model of PTSD provided the best fit. The relations of PTSD symptoms with sociodemographic and medical variables were also explored.