The self-management and transition manual "ALL YOU NEED IS LOVE" for adolescents with chronic kidney disease.

PURPOSE: 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. DESIGN AND METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. PRACTICE IMPLICATIONS: 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.

Interest in genetic testing and risk-reducing behavioral changes: results from a community health assessment in New York City.

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.

Trends and Disparities in Health Care Transition Preparation from 2016 to 2019: Findings from the US National Survey of Children's Health.

OBJECTIVES: 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. STUDY DESIGN: 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. RESULTS: 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. CONCLUSIONS: 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.

E-cigarette Use Among Young Adult Patients: The Opportunity to Intervene on Risky Lifestyle Behaviors to Reduce Cancer Risk.

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.

Adverse childhood experiences (ACEs) and child behaviour problems in KwaZulu-Natal, South Africa.

BACKGROUND: Adverse childhood events (ACEs) are associated with negative health effects in adulthood. Despite knowledge of these later impacts, little is known about the earlier effect of ACEs on later child behaviour in low- and middle-income countries (LMIC). METHODS: The population-based Asenze cohort study was implemented in a peri-rural area of KwaZulu-Natal, South Africa, comprising five Zulu tribal areas. Two waves of data were examined: family information and ACEs exposure when children were on average 5 years old and child behaviour problems (Strengths and Difficulties Questionnaire [SDQ]) approximately 2 years later (average age 7 years). Logistic regression analysis was used to examine unadjusted and adjusted relationships between cumulative ACEs experienced and the SDQ total scores (dichotomized as top 10% vs. the rest) as well as selected SDQ subscales. RESULTS: A significant relationship between increased ACE exposure and SDQ total score was observed. The same relationship was also seen for the SDQ emotional symptoms and conduct problem subscales, but not for hyperactivity. The results of a sensitivity analysis excluding intimate partner violence from the ACEs measure demonstrated similar results. CONCLUSIONS: There is an association between exposure to ACEs and later child behaviour problems within this LMIC population demonstrating an early negative impact for ACEs. While previous research has focused on the effects of ACEs on adult health, this study provided evidence for an earlier relationship between ACEs and child behaviour problems that may be a part of the mechanism through which later health effects arise.

Evaluation of the TRxANSITION Index-Parent Version for Assessment of Readiness to Transition to Adult Care Among 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.

Engagement in Household Chores in Youth With Chronic Conditions: Health care Transition Implications.

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 (ß^ = 5.17, p = .026) and better communication with providers (ß^ = 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.

Association of youth health care transition readiness to role overload among parents of children with chronic illness.

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 (ß = -.12, P ≤ .008) and a lower level in the self-management domain on the parent proxy measure (ß = -.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.

Longitudinal Self-Management and/or Transition Readiness per the TRxANSITION Index among Patients with Chronic Conditions in Pediatric or Adult Care Settings.

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 < .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. 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.

Disparities in Health Literacy and Healthcare Utilization among Adolescents and Young Adults with Chronic or End-stage Kidney Disease.

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±5.60years (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.

A Parental Report of Youth Transition Readiness: The Parent STARx Questionnaire (STARx-P) and Re-evaluation of the STARx Child Report.

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.

Relating Health Locus of Control to Health Care Use, Adherence, and Transition Readiness Among Youths With Chronic Conditions, North Carolina, 2015.

INTRODUCTION: Health locus of control refers to the belief that health is in one's control (internal control) or is not in one's control (external control). Among adults, external locus of control is associated with negative health outcomes, whereas internal locus of control is associated with favorable outcomes. Few studies examined these associations among youths. The objective of our study was to determine how locus of control relates to health care use, medication adherence, missed school, and readiness for transition to adult medical care for youths with chronic conditions. METHODS: Participants at a camp for youths aged 6 to 17 years with chronic health conditions completed a survey measuring locus of control, readiness for transition to adult care, and medication adherence. Their parents completed a separate part of the survey about health care use and missed school days in the past year. RESULTS: A total of 163 youths completed the survey (78.5% white; 52.1% female; mean age, 12.3 y). Internal locus of control (ß = 0.196; P = .013) and external Doctor locus of control with doctors controlling disease (ß = 0.181; P = .025) were positively associated with transition readiness. External control by chance or with others controlling disease was negatively associated with transition readiness (ß = -0.248; P = .002) and positively associated with emergency department visits (ß = 0.225; P = .004) and with number of hospital inpatient nights at hospital (ß = 0.166; P = .04). CONCLUSION: Adolescents with external control of their health by chance or by other people are at increased risk for negative health outcomes and may fail to develop the self-management skills needed for successful transitioning to adult care. Future studies should examine effects of changes in locus of control on health outcomes among youths.

The global pediatric nephrology workforce: a survey of the International Pediatric Nephrology Association.

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.