IMPORTANCE: There is a lack of agreement on what constitutes successful outcomes for the process of health care transition (HCT) among adolescent and young adults with special health care needs. ...OBJECTIVE: To present HCT outcomes identified by a Delphi process with an interdisciplinary group of participants. DESIGN, SETTING, AND PARTICIPANTS: A Delphi method involving 3 stages was deployed to refine a list of HCT outcomes. This 18-month study (from January 5, 2013, of stage 1 to July 3, 2014, of stage 3) included an initial literature search, expert interviews, and then 2 waves of a web-based survey. On this survey, 93 participants from outpatient, community-based, and primary care clinics rated the importance of the top HCT outcomes identified by the Delphi process. Analyses were performed from July 5, 2014, to December 5, 2014. EXPOSURES: Health care transition outcomes of adolescents and young adults with special health care needs. MAIN OUTCOMES AND MEASURES: Importance ratings of identified HCT outcomes rated on a Likert scale from 1 (not important) to 9 (very important). RESULTS: The 2 waves of surveys included 117 and 93 participants as the list of outcomes was refined. Transition outcomes were refined by the 3 waves of the Delphi process, with quality of life being the highest-rated outcome with broad agreement. The 10 final outcomes identified included individual outcomes (quality of life, understanding the characteristics of conditions and complications, knowledge of medication, self-management, adherence to medication, and understanding health insurance), health services outcomes (attending medical appointments, having a medical home, and avoidance of unnecessary hospitalization), and a social outcome (having a social network). Participants indicated that different outcomes were likely needed for individuals with cognitive disabilities. CONCLUSIONS AND RELEVANCE: Quality of life is an important construct relevant to HCT. Future research should identify valid measures associated with each outcome and further explore the role that quality of life plays in the HCT process. Achieving consensus is a critical step toward the development of reliable and objective comparisons of HCT outcomes across clinical conditions and care delivery locations.
The complex medical regimens of children and adolescents with chronic conditions can have a significant impact on families and households. Caregivers may experience burden, which can lead to negative ...health consequences and poor quality of life. The objective of this study was to determine child-related predictors and risk factors for caregiver burden among parents of children with chronic conditions.
We distributed an institutional review board (IRB)-approved, online cross-sectional survey to parents of children who attended the Victory Junction therapeutic camp. Parents provided information on child demographics, disease characteristics, and healthcare utilization. Parents also answered the adapted Zarit Burden Interview, which measured caregiver burden. Children completed scales about self-management and self-efficacy. Linear regression analyses determined how children's disease characteristics, health utilization, and self-management skills were associated with caregiver burden.
We enrolled 150 mother-child dyads. The mean age of child participants was 12.23 years (±2.5), with an age range of 6 to 16 years. It was determined that children's number of medicines and injections (β = 0.161,
= 0.047), a diagnosis of attention-deficit/hyperactivity disorder (ADHD) in addition to the primary medical condition (β = 0.216,
= 0.008), frequent visits with a primary care provider (PCP) (β = 0.209,
= 0.026) and emergency room (ER) visits (β = 0.197,
= 0.038), and lower child self-efficacy (β = -0.241,
= 0.041) were predictors of increased caregiver burden.
We identified risk factors for caregiver burden among mothers. Future studies should explore additional child-related characteristics as they relate to caregiver burden, and should determine if interventions for mothers of children with chronic conditions can lead to positive outcomes.
14 yo F presents with vaginal bleeding after failed home abortion. Needs assistance with judicial bypass and in-clinic abortion. I entered the clinic exam room to find a young woman named Claudia ...sitting alone. Her voice shook with fear; she whispered as she spoke. Claudia had recently emigrated from Guatemala. After missing her period a few weeks prior, a home pregnancy test confirmed her suspicions. Unsure of where to turn, she had asked her friend in Guatemala for help obtaining an abortion. Within days, she received misoprostol in the mail-a medication that her friend had purchased off the street. She took the medication at home. That's when the bleeding and cramping started. It wouldn't stop.
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 use neighborhood-level Child Opportunity Index (COI) measures to investigate disparities in congenital heart surgery postoperative outcomes and identify potential targets for intervention.
In this ...single-institution retrospective cohort study, children <18 years old who underwent cardiac surgery between 2010 and 2020 were included. Patient-level demographics and neighborhood-level COI were used as predictor variables. COI—a composite US census tract-based score measuring educational, health/environmental, and social/economic opportunities—was dichotomized as lower (<40th percentile) vs higher (≥40th percentile). Cumulative incidence of hospital discharge was compared between groups using death as a competing risk, adjusting for clinical characteristics associated with outcomes. Secondary outcomes included hospital readmission and death within 30 days.
Among 6247 patients (55% male) with a median age of 0.8 years (IQR, 0.2-4.3), 26% had lower COI. Lower COI was associated with longer hospital lengths of stay (adjusted HR, 1.2; 95% CI, 1.1-1.2; P < .001) and an increased risk of death (adjusted OR, 2.0; 95% CI. 1.4-2.8; P < .001), but not hospital readmission (P = .6). At the neighborhood level, lacking health insurance coverage, food/housing insecurity, lower parental literacy and college attainment, and lower socioeconomic status were associated with longer hospital length of stay and increased risk of death. At the patient-level, public insurance (adjusted OR, 1.4; 95% CI, 1.0-2.0; P = .03) and caretaker Spanish language (adjusted OR 2.4; 95% CI, 1.2-4.3; P < .01) were associated with an increased risk of death.
Lower COI is associated with longer length of stay and higher early postoperative mortality. Risk factors identified including Spanish language, food/housing insecurity, and parental literacy serve as potential intervention targets.
The objective of our study was to determine the socioecologic factors that predict readiness for self-management and transition from pediatric to adult health care services, adherence to taking ...medications, and health care utilization among adolescents and young adults with chronic kidney disease.
We enrolled 52 adolescents and young adults aged 13 to 21 (96.5% participation). Participants were administered measures that examined: socioecologic factors, individualized education plans or 504 plans, readiness for self-management and transition (the University of North Carolina TRxANSITION scale), triangulated measures of adherence to taking medications (parent reported, physician reported, and medication-possession ratios), and health care utilization (number of visits to the emergency department, number of inpatient admissions, and number of inpatient days in the previous year).
Overall, our sample had moderate levels of readiness for self-management and transition, high rates of parent- and physician-reported medication adherence, and high rates of health care utilization. Age was a significant positive predictor of readiness for self-management and transition. Compared with participants who had private health insurance, participants who had public insurance had more emergency department visits, inpatient admissions, and inpatient days, and lower rates of physician-reported medication adherence. Participants who did not have an individualized education plan or 504 plan had significantly more emergency department visits, inpatient admissions, and inpatient days.
Socioecologic factors play an important role in readiness for self-management and transition, medication adherence, and health care utilization in pediatric patients with chronic kidney disease. Age, insurance status, and having an individualized education plan or 504 plan may be key factors.
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