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To evaluate national trends in health care transition preparation over a 4-year period using the National Survey of Children's Health (NSCH) and to identify and examine disparities in receipt of health care transition preparation over the study period.Data from the NSCH, an annual serial cross-sectional survey conducted from 2016 to 2019, were examined. Caregivers answered questions regarding one of their children within each of a random sample of households across the US. The primary analysis examined trends in health care transition preparation based on the year of survey completion. A secondary analysis examined the associations of race/ethnicity, primary household language, insurance type, and children with special health care needs (CSHCN) with receipt of health care transition preparation.We included data from 54 434 youths (20 708 in 2016, 8909 in 2017, 12 587 in 2018, and 12 230 in 2019) aged 12-17 years whose caregivers completed the NSCH between 2016 and 2019. The sample was weighted to be nationally representative based on weights provided by the NSCH. The proportion of youths receiving necessary health care transition preparation increased over the study period, from 14.8% in 2016 to 20.5% in 2019 (P .001). Multivariable logistic regression demonstrated increased odds of receiving health care transition preparation in 2018 and 2019, as well as for White non-Hispanic youths, those with English or Spanish as a primary household language, those with private insurance, and CSHCN.Although the proportion of youths receiving health care transition preparation has increased since 2016, the need for ongoing improvement and elimination of disparities in health care transition preparation remains.

To examine the effects of "ALL YOU NEED IS LOVE", a novel six-week, self-directed patient education manual designed to improve chronic kidney disease knowledge/self-management, health care transition readiness, self-advocacy, and mindfulness skills among adolescents with chronic kidney disease.We enrolled 49 adolescents aged 11-17 years (mean age 14.7 ± 1.9; 53.1% males) from a university hospital kidney center who had CKD stages 3 and greater, who were randomly assigned into the "ALL YOU NEED IS LOVE" patient education only group (n = 31) or the "ALL YOU NEED IS LOVE" patient education plus mindfulness training group (n = 18). Participants completed Qualtrics surveys at baseline, post-intervention, and three-month follow-up. The survey included measures of outcome variables (i.e., self-management/transition readiness, patient self-advocacy, and mindfulness), and an additional demographic questionnaire was included in the baseline survey. Multilevel model analyses were used to examine the effects of group and time on the outcome variables.Multilevel model analyses showed an overall significant time effect across all outcome variables in both groups. However, the group effects were not statistically significant across the outcome variables.Both interventions significantly increased participants' self-management/HCT readiness, self-advocacy, and mindfulness over time. Mindfulness training may not bring additional benefits to the "ALL YOU NEED IS LOVE" education manual.Pediatric nurses and clinicians may utilize the self-directed "ALL YOU NEED IS LOVE" manual to increase self-management/transition readiness, self-advocacy, and mindfulness among adolescents with chronic kidney disease.

Risk-based genetic tests are often used to determine cancer risk, when to initiate screening, and frequency of screening, but rely on interest in genetic testing. We examined overall interest in genetic testing for cancer risk assessment and willingness to change behavior, and whether these are affected by demographic or socioeconomic factors. We conducted a community needs health survey in 2019 among primary care and cancer patients, family members and community members in New York City. We used univariable analysis and relative risk regression to examine interest in genetic cancer risk testing and willingness to modify lifestyle behaviors in response to an informative genetic test. Of the 1225 participants, 74.0% (n = 906) expressed interest in having a genetic test to assess cancer risk. Interest in genetic testing was high across all demographic and socioeconomic groups; reported interest in genetic testing by group ranged from 65.0 (participants aged 65 years and older) to 83.6% (participants below federal poverty level). Among the 906 participants that reported interest in genetic testing, 79.6% were willing to change eating habits, 66.5% to change exercise habits, and 49.5% to lose weight in response to an informative genetic test result. Our study reveals that interest in genetic testing for cancer risk is high among patients and community members and is high across demographic and socioeconomic groups, as is the reported willingness to change behavior. Based on these results, we recommend that population-based genetic testing may result in greater reduction cancer risk, particularly among minoritized groups. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12687-022-00610-2.

Use of e-cigarettes and other electronic nicotine delivery systems (ENDS) is on the rise. We administered a health needs survey via email to 804 adult primary care and oncology patients at a large urban academic medical center in 2019. We examined differences in e-cigarette use by smoking status, personal history of cancer, alcohol use, and second-hand tobacco smoke exposure. Of the 804 participants, 90 (11.2%) reported ever using e-cigarettes. E-cigarette use was more prevalent in young adults (risk ratio [RR] for 18-24 years: 4.58, 95% confidence interval [95% CI] 2.05, 10.26), current smoking (RR 4.64, 95% CI 1.94, 11.07), very often/often binge drinking (RR 3.04, 96% CI 1.38, 6.73), and ≥ 1 smokers in the home (RR 3.90, 95% CI 2.10, 7.23). Binge alcohol consumption and tobacco smoking are associated with increased risk cancer. Inquiries about e-cigarette use among adults 25-40 years present providers the opportunity to also counsel young adult about reducing cancer risk.

This study examined associations between chores engagement, self-management, and transition readiness in youth with chronic conditions. Youths with various chronic conditions attending a therapeutic camp, and their parents participated. Responses of 165 campers and their parents were analyzed (mean camper age 12.3 ± 2.6 years, 47.9% males, 79.4% White). The most common diagnoses were diabetes, spina bifida, cerebral palsy, and sickle cell anemia. Youth who completed chores manifested higher overall health care transition readiness ([Formula: see text] = 5.17, p = .026) and better communication with providers ([Formula: see text] = 2.98, p = .006) than youth who completed no chores. Higher chores frequency was not more predictive of higher health care transition readiness scores above and beyond the effects of having chores at all. These results suggest that responsible health care behaviors are related to similar actions in other areas of life. Assignment of chores may promote self-management and health care transition readiness in youth with chronic conditions.

Purpose To develop and evaluate a parent-proxy measure of youth HCT readiness: the TRxANSITION Index–Parent Version. Design and methods We recruited parents (77% female) and youth (ages 12 to 25) to complete transition readiness measures during outpatient clinic visits. The TRxANSITION Index—Parent Version contains two domains: the Parent Knowledge Domain assessing a parent's knowledge of their youth's illness, and the Parent Proxy Domain, which provides a parental perspective regarding a youth's transition readiness skills. We evaluated the TRxANSITION Index – Parent Version for differences between parent and youth reports of HCT readiness, associations between parent's score and youth's characteristics, and item-category, item-sub-index, and sub-index category correlations. Results Data from 93 parents-youth dyads were analyzed. Parents scored significantly higher than youth in the Parent Knowledge Domain and similarly in the Parent Proxy Domain. Parents of daughters had significantly higher scores in the Parent Knowledge Domain than parents of sons and reported similar scores to Parents of sons in the Parent Proxy Domain. Only the self-management sub-index significantly correlated with youth's age. The sub-index-domain, item-sub-index, and item-domain correlations assessed were generally large in magnitude (r > 0.5). Conclusions The TRxANSITION Index–Parent Version shows promise as a means of assessing parent knowledge of a youth's illness and may provide an accurate proxy assessment of a youth HCT readiness skills. Practice implications Obtaining parental perspective on a youth's HCT readiness may provide useful clinical information during the transition process.

Purpose The STARx Questionnaire is a self-report measure of health care transition (HCT) readiness in youth with chronic diseases. We aimed to improve reliability and generalizability of the STARx and report initial reliability data on the STARx-P Questionnaire, a self-report measure of parent perspective on their child's HCT readiness. Methods Participants were recruited in several clinics from a large academic hospital in the southeastern USA and via the therapeutic summer camp for children with chronic disease. Children with chronic conditions responded to the 18-question STARx Questionnaire and their parents responded to the parent version, the STARx-P Questionnaire. Results IRB-approved consents were obtained from 341 parents (89.4% mothers) and 455 children (Mean age 12.28 ± 2.53; 36.9% Males; 68.6% Caucasian; 22.6% African-American). The most common diagnoses were kidney disease, inflammatory bowel disease, diabetes, cerebral palsy, sickle cell, and cystic fibrosis. Principal component analysis of the STARx-P Questionnaire identified three major subscales in both the child and parent-report: Disease Knowledge, Self-management and Provider Communication. Internal reliability was moderate to good (α = 0.545–0.759). Conclusions The STARx-P Questionnaire and STARx Version 4 Questionnaire have demonstrated initial reliability in this multi-institution study. It is the first HCT readiness questionnaire that includes a parent-proxy report which is needed in studies of non-verbal and/or developmentally delayed children. Parent-report can also give unique insights not obtained from self-reports.

Background A parent's level of role overload, a situation in which the demands of an individual's roles are beyond their capacity to perform adequately, has been associated with poor outcomes in adolescents. It is unknown if role overload in parents is associated with less health care transition (HCT) readiness in their children with chronic conditions. We sought to assess this relationship. Methods Youth with chronic conditions attending a therapeutic camp and their parents completed online consents/assents and de-identified surveys. Parents reported on parental role overload using the Reilly Role Overload Scale and a proxy assessment of the youth's HCT readiness using the STARx -Parent Questionnaire. Youth self-reported on their HCT readiness using the STARx Questionnaire. Linear regression measured the relationship between parent role overload and HCT readiness, controlling for youth's age, sex, and degree of youth's educational support. Results One hundred fifty-two parents and 50 youth completed the measures. Greater parental role overload was associated with less overall HCT readiness on the parent proxy measure (β = -.12, P ≤ .008) and a lower level in the self-management domain on the parent proxy measure (β = -.20, P ≤ .001). We found no associations between parent role overload and youth self-report of HCT readiness. Conclusion Parent's level of role overload had no association with youth's self-report of HCT readiness but was negatively associated with parent proxy report of their youth's HCT readiness, suggesting that parents with high levels of role overload may perceive their youth as less ready to transition to adult-focused care.

To evaluate the roles of key individual, family, and illness characteristics on the levels of and gains in longitudinal healthcare transition (HCT) readiness in the pediatric setting and/or self-management skills (SMS) in the adult-focused setting, we used a large dataset with longitudinal measurements from 2006 to 2015.This longitudinal observational study followed 566 adolescents and young adults with chronic conditions at University of North Carolina Hospitals. TRLevels of and gains in HCT/SMS scores increased with age (P .001) with smaller increases at older ages. Mastery of skills varied by age with self-management achieved after 20 years of age. Scores varied positively by father's education and negatively by mother's education and duration of diagnosis. Gains in scores further varied positively with private insurance and negatively with mother's education and duration of diagnosis.We found diminishing positive increases in HCT/SMS scores as patients become older and smaller levels of and gains in readiness among younger patients with more educated mothers. Risk factors for absolute level of HCT/SMS readiness and inadequate longitudinal gains are not always the same, which motivates a deeper understanding of this dynamic process through additional research. This information can guide providers to focus HCT/SMS preparation efforts on skills mastered at particular ages and to identify patients at risk for inadequate development of HCT/SMS skills.

Purpose Low health literacy adversely affects health outcomes in adults with chronic kidney disease. The current study examined associations between limited/inadequate health literacy and health services utilization among adolescents and young adults (AYA) with chronic or end-stage kidney disease (CKD or ESKD). Design and Methods This was a retrospective cohort study that enrolled patients from both the pediatric- and adult-focused nephrology clinics of a major university hospital. Demographic information, patients' health literacy and numeracy skills (Newest Vital Sign), and health services utilization (emergency department visits, preventable hospitalizations, total hospitalizations, and length of stay in the hospital) were evaluated. A negative binomial regression model for counts tested the association between AYA patients' literacy/numeracy skills and health services utilization. Results The study enrolled 142 participants, 66 (46.5%) patients from adult nephrology and 76 (53.5%) from pediatric nephrology clinics, with a mean age of 20.8 ± 5.60 years (range 12–31). Half of the sample (n = 72, 51%) had limited health literacy skills. Health literacy/numeracy level was not significantly associated with total hospitalizations, preventable hospitalizations, emergency department (ED) visits, or length of hospital stay. However, public insurance/self-pay, minority race, and kidney transplant/dialysis diagnoses were associated with more preventable hospitalizations. Conclusions Among AYA with CKD/ESKD, there were no differences between the low and adequate health literacy groups on health care utilization outcomes when modeling clinical outcomes (total hospitalizations, preventable hospitalizations, ED visits, and length of hospital stay) after adjusting for demographics and disease type. This suggests that other factors warrant consideration in healthcare utilization rates.

Objective To evaluate the roles of key individual, family, and illness characteristics on the levels of and gains in longitudinal healthcare transition (HCT) readiness in the pediatric setting and/or self-management skills (SMS) in the adult-focused setting, we used a large dataset with longitudinal measurements from 2006 to 2015. Study Design This longitudinal observational study followed 566 adolescents and young adults with chronic conditions at University of North Carolina Hospitals. TRxANSITION Index measurements, which represent learning outcomes rather than health outcomes, were collected multiple times per patient and analyzed using a novel application of an education-based approach. Results Levels of and gains in HCT/SMS scores increased with age (P Conclusions We found diminishing positive increases in HCT/SMS scores as patients become older and smaller levels of and gains in readiness among younger patients with more educated mothers. Risk factors for absolute level of HCT/SMS readiness and inadequate longitudinal gains are not always the same, which motivates a deeper understanding of this dynamic process through additional research. This information can guide providers to focus HCT/SMS preparation efforts on skills mastered at particular ages and to identify patients at risk for inadequate development of HCT/SMS skills.

Background The global pediatric nephrology workforce is poorly characterized. The objectives of our study were to assess pediatric nephrologists’ perceptions of the adequacy of the pediatric nephrology workforce, and understand regional challenges to fellow recruitment and job acquisition. Perceptions regarding optimal length of training and research requirements were also queried. Methods A 17-question web-based survey comprised of 14 close-ended and 3 open-ended questions was e-mailed to members of the International Pediatric Nephrology Association. Quantitative and qualitative analyses were performed. Results We received 341 responses from members of the International Pediatric Nephrology Association from 71 countries. There was a high degree of overall perceived workforce inadequacy with 67 % of all respondents reporting some degree of shortage. Perceived workforce shortage ranged from 20 % in Australia/New Zealand to 100 % in Africa. Respondents from Africa (25 %) and North America (22.4 %) reported the greatest difficulty recruiting fellows. Respondents from Australia/New Zealand (53.3 %) and Latin America (31.3 %) reported the greatest perceived difficulty finding jobs as pediatric nephrologists after training. Low trainee interest, low salary, lack of government or institutional support, and few available jobs in pediatric nephrology were the most frequently reported obstacles to fellow recruitment and job availability. Conclusions Globally, there is a high level of perceived inadequacy in the pediatric nephrology workforce. Regional variability exists in perceived workforce adequacy, ease of recruitment, and job acquisition. Interventions to improve recruitment targeted to specific regional barriers are suggested. Electronic supplementary material The online version of this article (doi:10.1186/s12882-016-0299-2) contains supplementary material, which is available to authorized users.