In focus: perplexing increase of urinary stone disease in children, adolescent and young adult women and its economic impact.

Background: Urinary stone disease (USD) historically has affected older men, but studies suggest recent increases in women, leading to a near identical sex incidence ratio. USD incidence has doubled every 10 years, with disproportionate increases amongst children, adolescent, and young adult (AYA) women. USD stone composition in women is frequently apatite (calcium phosphate), which forms in a higher urine pH, low urinary citrate, and an abundance of urinary uric acid, while men produce more calcium oxalate stones. The reasons for this epidemiological trend are unknown. Methods: This perspective presents the extent of USD with data from a Canadian Province and a North American institution, explanations for these findings and offers potential solutions to decrease this trend. We describe the economic impact of USD. Findings: There was a significant increase of 46% in overall surgical interventions for USD in Ontario. The incidence rose from 47.0/100,000 in 2002 to 68.7/100,000 population in 2016. In a single United States institution, the overall USD annual unique patient count rose from 10,612 to 17,706 from 2015 to 2019, and the proportion of women with USD was much higher than expected. In the 10-17-year-old patients, 50.1% were girls; with 57.5% in the 18-34 age group and 53.6% in the 35-44 age group. The roles of obesity, diet, hormones, environmental factors, infections, and antibiotics, as well as the economic impact, are discussed. Interpretation: We confirm the significant increase in USD among women. We offer potential explanations for this sex disparity, including microbiological and pathophysiological aspects. We also outline innovative solutions - that may require steps beyond typical preventive and treatment recommendations.

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.

School Nurses Practices Promoting Self-Management and Healthcare Transition Skills for Adolescents with Chronic Conditions in Urban Public Schools: A Mixed Methods Study.

Background: Adolescents and young adults (AYA) with chronic conditions should acquire self-management skills as part of their healthcare transition (HCT) from pediatric to adult-focused care. HCT/self-management skills have the potential to help mitigate health disparities among minority AYA with chronic conditions. This study investigated school nurses' practices promoting HCT/self-management skills in urban public schools. Methods: Seventy-nine nurses from three urban school districts in Massachusetts completed a survey of 32 Likert-type questions on HCT/self-management skills, eight demographic questions, and five open-ended practice questions assessing how often they have asked students with chronic conditions about HCT/self-management skills, based on the UNC TRxANSITION IndexTM. Results: Among the 79 school nurses who participated (response rate 76%), 67% never or rarely assessed students' knowledge of HCT/self-management, and 90% would use a tool that promotes/measures HCT/self-management skills. Conclusion: In our study sample, most school nurses acknowledged the importance of assessing HCT/self-management skills. The majority favored using a tool to promote these skills.

Transition Readiness Not Associated With Measures of Health in Youth With IBD.

BACKGROUND: It remains unclear how transition readiness is associated with various domains of health in children and young adults. Our objective was to describe the transition readiness of children and young adults with inflammatory bowel disease (IBD) and examine its associations with demographic factors, IBD activity, and measures of physical, psychological, and social health. METHODS: We recruited children ages 12 to 17 and young adults ages 18 to 20 from 2 internet-based cohorts sponsored by the Crohn's & Colitis Foundation. Participants self-reported demographics, IBD activity, transition readiness, health-related quality of life, and Patient-Reported Outcomes Information Systems domains of physical, psychological, and social health. RESULTS: Among 361 pediatric and 119 adult participants, age and female sex were associated with transition readiness. The association was greater in the pediatric cohort. Having IBD in remission was associated with worse transition readiness in the pediatric cohort only (beta = 0.3; P = 0.003). Health-related quality of life and Patient-Reported Outcomes Information Systems measures of fatigue, pain interference, and sleep disturbance were not associated with transition readiness in either children or adults. We observed few small associations between psychological or social health and transition readiness. Better transition readiness was associated with greater anxiety in adults (beta = -0.02; P = 0.02) and greater peer relationships among children (beta = 0.01; P = 0.009). CONCLUSIONS: In children and young adults with IBD, transition readiness was associated with older age and female sex. Associations between transition readiness and physical, psychological, and social health were either small, inconsistent across age groups, or nonexistent.

Spanish-Speaking Parents' Experiences Accessing Academic Medical Center Care: Barriers, Facilitators and Technology Use.

BACKGROUND AND OBJECTIVE: Children of Spanish-speaking caregivers face multiple barriers to care in academic medical centers. This study identified barriers and facilitators of health care and described use of health information technology in order to guide interventions and optimize services. METHODS: In-depth, audiotaped interviews were conducted with monolingual Spanish-speaking caregivers (N = 28) of children receiving care in academic medical center clinics using a structured interview guide. Interviews were transcribed in Spanish, and key themes were identified using thematic analysis. Illustrative quotes for each theme were translated into English. RESULTS: Language-specific barriers included arrival/registration occurring in English, lack of bilingual personnel, heavy reliance on interpreters, long wait times, and challenging phone communication. Non-language-specific barriers included medical center size and complexity, distance to services, lack of convenient and coordinated appointments, missing work/school, and financial barriers including insurance coverage or lack of citizenship. Caregivers identified interpreters, bilingual physicians and staff, and written materials in Spanish as facilitators of care. Most caregivers had internet access and expressed interest in health information technology, including patient portals, to communicate about their children's health. CONCLUSIONS: Caregivers of Spanish-speaking children encounter many language-specific barriers, which are compounded by non-language-specific barriers arising from complex health systems and social needs. Caregivers with limited resources described working hard to meet children's complex health care needs despite these barriers. Most caregivers had internet access and interest in patient portals. Academic medical centers may need multifaceted interventions that improve the availability of bilingual staff and interpreters and also address caregivers' social and informational needs.

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.

Self-Management and Health Care Transition Among Adolescents and Young Adults With Chronic Kidney Disease: Medical and Psychosocial Considerations.

Health care transition (HCT) is a process that requires preparation as a continuum from pediatric- to adult-focused services. For adolescents and young adults with chronic or ESRD, this process can be prolonged due to their physical, psychological, family, or ecological factors. HCT preparation is a matter of patient safety and patient rights as the consequences of poor preparation at the time of transfer to adult-focused services are great, including rejection of organs, disease relapse, or even death. We present a case to illustrate important points of HCT preparation, with suggestions for intervention by the interdisciplinary team members who serve (and will serve) these survivors of pediatric-onset health conditions. To monitor the HCT process, yearly measurements of skill mastery need to take place guide interventions.

Health care transition preparation in youth with chronic conditions: working towards translational evidence with a patient perspective.

Research in the health care transition (HCT) field has increasingly expanded in the last few decades. However, structured and more intensive examination of this field is needed to provide the best health care practices for youth with chronic health conditions. This commentary includes the views of a young adult with a chronic condition who has graduated to adult-focused services, his parent, and a group of interdisciplinary health providers. We examined the current evidence in the field and suggest prioritizing future directions for research and practice. The key factors in HCT are discussed, along with the current initiatives that are guiding policy, and propose suggestions for how to integrate the current research into practice.

Self-management and transition among adolescents/young adults with chronic or end-stage kidney disease.

BACKGROUND: Adolescents/young adults (AYA) with chronic kidney disease (CKD) or end-stage kidney disease (ESKD) are at risk for poor health outcomes related to self-management. To improve their health and quality of life, AYA must build self-management (for those in the pediatric- and adult-focused setting) and/or health care transition (HCT) skills (for those in the pediatric setting). METHODS: Self-management and/or HCT encompass a variety of domains that must be tailored to each individual. Annual assessments should begin between the ages of 12 and 14 and continue in the adult-focused setting until patients have achieved demonstrated self-management and/or HCT skills mastery. These assessments will guide interventions that are congruent in terms of literacy, development and culture. Facilitation of this process from the perspective of both the pediatric and the adult health-care systems is described. CONCLUSIONS: Deficiencies and barriers to self-management and/or HCT for AYA with ESKD remain. There is no consensus on the definition of successful HCT preparation, with few tools to assess transition readiness and/or self-management. It is important for health providers to promote the self-management and/or health-care transition skills of AYA with ESKD. Customization of these activities and involvement of the whole family will contribute towards better health-related quality of life and patient outcomes.

Single-item or two-item literacy screener to predict the S-TOFHLA among adult hemodialysis patients.

OBJECTIVE: We compared single-item (SILS) and two-item (TILS) literacy screeners in predicting Short Test of Functional Health Literacy in Adults (S-TOFHLA) scores. METHODS: Adult hemodialysis patients completed SILS, which determines need for assistance when reading written medical information; TILS (last grade completed and self-reported reading ability); and S-TOFHLA. Receiver operator characteristic curves (ROC) and stratum specific likelihoods were calculated. RESULTS: Of 227 participants, median S-TOFHLA was 24 (IQR 15-34). 129 (55%) participants had adequate, 70 (30%) inadequate, and 37 (16%) marginal health literacy. SILS and TILS predicted S-TOFHLA scores equivalently. Test characteristics predicting inadequate health literacy were: SILS sensitivity for threshold >1, 54% (95%CI: 44, 64), for >2, 39% (29, 49) and specificity for >1, 73% (64, 80), for >2, 93% (87, 97), area under the ROC of 0.67 (0.60-0.74); TILS sensitivity for threshold >1, 72% (62, 80), for >2, 30% (21, 40) and specificity for >1, 54% (45, 63), for >2, 86% (79, 92), area under the ROC of 0.66 (0.59-0.73). CONCLUSION: SILS and TILS had similar test characteristics in predicting S-TOFHLA. PRACTICE IMPLICATIONS: While a positive result on either test increases the likelihood that a patient has low health literacy, the SILS is easier to administer and score.