Peter Scal

Addressing Transition to Adult Health Care for Adolescents With Special Health Care Needs

Objective. To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs. Methods. Data for 4332 adolescents, 14 to 17 years of age, from the 2000–2001 National Survey of Children With Special Health Care Needs were used. The adequacy of transition services was determined by parent self-report. Explanatory variables, including parental education, family poverty status, race/ethnicity, measures of the severity and complexity of conditions, health insurance status, having a personal doctor, and the quality of the parents relationship with the adolescents doctor, were entered into a regression model. Results. Overall, 50.2% of parents reported that they had discussed transition issues with their adolescents doctor and 16.4% had discussed and developed a plan for addressing those needs. In a multivariate regression analysis, correlates of the adequacy of transition services included older age, female gender, complexity of health care needs, and higher quality of the parent-doctor relationship. Conclusions. Among adolescents with special health care needs, those who were older and those with more complicated needs were more likely to have addressed the transition from a pediatric to adult-oriented system of care. Furthermore, this analysis demonstrated a strong association between a high-quality parent-provider relationship and the extent to which transition issues were addressed. The importance of transition services for adolescents with less complex needs and the overall impact of health care transition services were not assessed in this study and remain important questions for future investigations.

Trends in transition from pediatric to adult health care services for young adults with chronic conditions

PURPOSE The rationale underlying this study was the need to move the transition health services model from a theoretical framework to an empirically-based investigation. Thus, it was necessary to identify programs for youth with chronic or disabling conditions that assist in transitioning from child- to adult-focused health services by (a) discrete types, (b) functional categories, and (c) problems and issues faced by these programs. METHODS Nominations for transition health services programs were solicited from 1025 organizational agencies at the local, state, regional, and national levels. Two solicitations yielded 277 nominees. After pilot testing, a survey of 163 forced responses and open-ended questions was mailed to each nominated transition health services program. A total of 122 programs returned completed surveys. RESULTS Program services were categorized as adolescent-focused (38%), condition-focused (36%), and specialty-specific programs (26%). Few programs were primary care-based. Categories were subsequently collapsed into two types: adolescent-focused and condition-focused. No significant differences were noted between adolescent- and condition-focused programs regarding provision of mental health services, vocational counseling, self-efficacy training, or health education. The primary barriers to transition health services were identified as funding and access to key staff, rather than family and adolescent resistance. CONCLUSION In general, self-identified transition health care programs do not achieve the goal of collaborative, coordinated, and integrative services to adolescents with chronic or disabling conditions. Furthermore, the barriers to attaining the goal are the limitations of the health care system itself.

Transition to Adulthood: Delays and Unmet Needs among Adolescents and Young Adults with Asthma

OBJECTIVE To examine the effect of the transition to adulthood on financial and non-financial barriers to care in youth with asthma. STUDY DESIGN With National Health Interview Survey data from 2000 to 2005, we examined delays and unmet needs because of financial and non-financial barriers, evaluating the effect of adolescent (age, 12-17 years; n = 1539) versus young adult age (age, 18-24 years; N = 833), controlling for insurance, usual source of care, and sociodemographic characteristics. We also simulated the effects of providing public insurance to uninsured patients and a usual source of care to patients without one. RESULTS More young adults than adolescents encountered financial barriers resulting in delays (18.6% versus 8%, P < .05) and unmet needs (26.6% versus 11.4%, P < .05), although delays caused by non-financial barriers were similar (17.3% versus 14.9%, P = not significant). In logistic models young adults were more likely than adolescents to report delays (odds ratio [OR], 1.45; 95% CI, 1.02-2.08) and unmet needs (OR, 1.8; 95% CI, 1.29-2.52) caused by financial barriers. CONCLUSIONS Delays and unmet needs for care caused by financial reasons are significantly higher for young adults than they are for adolescents with asthma.

When a Usual Source of Care and Usual Provider Matter: Adult Prevention and Screening Services

OBJECTIVETo examine whether the usual source of preventive care, (having a usual place for care only or the combination of a usual place and provider compared with no usual source of preventive care) is associated with adults receiving recommended screening and prevention services.DESIGNUsing cross-sectional survey data for 24,138 adults (ages 18–64) from the 1999 National Health Interview Survey (NHIS), we estimated adjusted odds ratios using separate logistic regression models for receipt of five preventive services: influenza vaccine, Pap smear, mammogram, clinical breast exam, and prostate specific antigen.RESULTSHaving both a usual place and a usual provider was consistently associated with increased odds for receiving preventive care/screening services compared to having a place only or neither. Adults ages 50–64 with a usual place/provider had 2.8 times greater odds of receiving a past year flu shot compared with those who had neither. Men ages 50–64 with a usual place/provider had nearly 10 times higher odds of receiving a PSA test compared with men who had neither. Having a usual place/provider compared with having neither was associated with 3.9 times higher odds of clinical breast exam among women ages 20–64, 4.1 times higher odds of Pap testing among women ages 21–64, and 4.8 times higher odds of mammogram among women ages 40–64.CONCLUSIONSHaving both a usual place and usual provider is a key variable in determining whether adults receive recommended screening and prevention services and should be considered a fundamental component of any medical home model for adults.

Smoking among American adolescents: a risk and protective factor analysis.

Cigarette smoking remains a substantial threat to the current and future health of Americas youth. The purpose of this study was to identify the risk and protective factors for cigarette smoking among US adolescents. Data from the National Longitudinal Study of Adolescent Health was used, comparing the responses of all non-smokers at Time 1 for their ability to predict the likelihood of smoking at Time 2, one year later. Data was stratified into four gender by grade group cohorts. Cross-cutting risk factors for smoking among all four cohorts were: using alcohol, marijuana, and other illicit drugs; violence involvement; having had sex; having friends who smoke and learning problems. Having a higher grade point average and family connectedness were protective across all cohorts. Other gender and grade group specific risk and protective factors were identified. The estimated probability of initiating smoking decreased by 19.2% to 54.1% both in situations of high and low risk as the number of protective factors present increased. Of the factors that predict or protect against smoking some are influential across all gender and grade group cohorts studied, while others are specific to gender and developmental stage. Prevention efforts that target both the reduction of risk factors and enhancement of protective factors at the individual, family, peer group and community are likely to reduce the likelihood of smoking initiation.

Preparing for adulthood: Health care transition counseling for youth with arthritis

OBJECTIVE To determine the proportion of adolescents with arthritis who receive health care transition services and to compare the rates with those reported for adolescents with other special health care needs and adolescents with diabetes. METHODS We used data from the 2005-2006 National Survey of Children with Special Health Care Needs. A parent/guardian identified youth ages 12-17 years with arthritis (n = 1,052), diabetes (n = 389), and special health care needs (n = 18,189). Four questions examined the extent to which providers discussed health care transition issues, including 1) transfer of care to adult providers, 2) health care needs of adults, 3) acquiring health insurance, and 4) encouraging self-care responsibility. Bivariate comparisons assessed the associations between sociodemographic characteristics and health care transition services, and multivariate regression models compared outcomes between conditions. RESULTS Many adolescents with arthritis are being encouraged to assume self-care responsibilities (74.8%); fewer discussed how health needs will change in adulthood (52.1%), acquiring insurance (22.5%), or transferring care to a provider who sees adults (19.0%). These results are similar to youth with other special health care needs, but behind youth with diabetes. CONCLUSION Among this sample of US adolescents, many report discussions about health care needs and self-management, but few are addressing critical aspects of the transition to adult-oriented health care.

Shared decision making: improving care for children with autism.

We assessed the extent to which parents of children with autism spectrum disorder report that they are engaged in shared decision making. We measured the association between shared decision making and (a) satisfaction with care, (b) perceived guidance regarding controversial issues in autism spectrum disorder, and (c) perceived assistance navigating the multitude of treatment options. Surveys assessing primary medical care and decision-making processes were developed on the basis of the U.S. Department of Health and Human Services Consumer Assessment of Healthcare Providers and Systems survey. In May 2009, after pilot testing, we sent surveys to 203 parents of children from ages 3 to 18 with International Classification of Diseases-9 and parent-confirmed autism spectrum disorder diagnoses. The response rate was 64%. Controlling for key demographic variables, parents of children with autism spectrum disorder reporting higher levels of shared decision making reported significantly greater satisfaction with the overall quality of their childs health care (p ≤ .0001). Parents reporting higher levels of shared decision making were also significantly more likely to report receiving guidance on the many treatment options (p  =  .0002) and controversial issues related to autism spectrum disorder (p  =  .0322). In this study, shared decision making was associated with higher parent satisfaction and improved guidance regarding treatments and controversial issues within primary care for children with autism spectrum disorder.

Preparing Residents to Counsel About Smoking

The objective of this study was to evaluate the effects of an innovative, multicomponent, theory-based educational intervention for pediatric residents on prevention of tobacco use counseling for cessation. Before and 3 months after intervention residents in a large urban midwestern pediatric residency program completed a self-assessment of measures of their attitudes and counseling behaviors. The intervention was a 3-hour multicomponent program including presentations, case discussions, role-plays and support material based on concepts from Motivational Interviewing (MI). Participants reported increased confidence in their ability to counsel, as well as greater frequency of counseling (standardized effect size (d) = 0.57). Residents also reported an increased use of principal components of MI, assessing how important quitting is to patients (d = .66), and how confident patients are in their ability to quit (d = .78). This brief educational intervention taught theory-based counseling techniques to pediatric residents. After the study, participants reported significant increases in their frequency of counseling as well as greater use of the MI principles.

Youth report of healthcare transition counseling and autonomy support from their rheumatologist

BackgroundTo increase understanding of the healthcare transition (HCT) process for young people living with Juvenile Idopathic Arthritis (JIA) by examining: 1) the extent to which youth report discussing HCT topics with their rheumatologist and 2) the association between youth perceptions of autonomy support from their rheumatologist and HCT discussions.MethodsData are from an online survey of youth in the United States with rheumatologic conditions (n= 134). HCT discussion was measured by 4 questions from the National Survey of Children with Special Health Care Needs. Youth perception of autonomy support was measured using a validated 6-item scale.ResultsOne third of the youth (33.7%) reported talking to their rheumatologist about transferring to adult medicine. Less than half (40.8%) of respondents talked with their rheumatologist about adult healthcare needs, and less than a quarter (22.0%) discussed acquiring health insurance as an adult. Nearly two-thirds of respondents (62.7%) reported that their rheumatologist usually/always encourages self-care responsibility. Multivariate analyses revealed significant associations between rheumatologist support for youth autonomy and HCT counseling.ConclusionThe low frequency of HCT counseling reported indicates a continuing need to increase awareness among rheumatologist in the USA. The strong associations between rheumatologist’s support for youth autonomy and HCT counseling suggest that developmentally “in-tune” providers may deliver the best guidance about transition planning for youth living with arthritis.

Improving health care transition services: Just grow up, will you please

tant insights into child health and mortality patterns around the world. However, there is a danger that for a general child health readership, the GBD 2013 study’s sophisticated methods and beautifully produced, detailed tables will mask the underlying weakness of available data in areas of greatest concern. This risk is less one of misinterpretation than of complacency, a willingness to accept the status quo as adequate. This is not inherently a critique of the GBD 2013 study effort. Rather, it is a critique of global systems that do not provide the GBD 2013 study investigators with the data they require to generate greater confidence in their estimates and analytic findings. This confidence will at some level reside in the technical guarantee that all lives are noticed and fundamentally valued, a guarantee that will increasingly prove essential to meeting the urgent health and justice demands of the neediest communities on earth.