Chronological age when healthcare transition skills are mastered in adolescents/young adults with inflammatory bowel disease

To describe the longitudinal course of acquisition of healthcare transition skills among adolescents and young adults with inflammatory bowel diseases

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

OBJECTIVE: 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. METHODS: 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\u27s disease characteristics, health utilization, and self-management skills were associated with caregiver burden. RESULTS: 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\u27s number of medicines and injections (β = 0.161, p = 0.047), a diagnosis of attention-deficit/hyperactivity disorder (ADHD) in addition to the primary medical condition (β = 0.216, p = 0.008), frequent visits with a primary care provider (PCP) (β = 0.209, p = 0.026) and emergency room (ER) visits (β = 0.197, p = 0.038), and lower child self-efficacy (β = -0.241, p = 0.041) were predictors of increased caregiver burden. CONCLUSIONS: 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

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

OBJECTIVE: 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. METHODS: 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\u27s disease characteristics, health utilization, and self-management skills were associated with caregiver burden. RESULTS: 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\u27s number of medicines and injections (β = 0.161, p = 0.047), a diagnosis of attention-deficit/hyperactivity disorder (ADHD) in addition to the primary medical condition (β = 0.216, p = 0.008), frequent visits with a primary care provider (PCP) (β = 0.209, p = 0.026) and emergency room (ER) visits (β = 0.197, p = 0.038), and lower child self-efficacy (β = -0.241, p = 0.041) were predictors of increased caregiver burden. CONCLUSIONS: 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

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-reportmeasure of parent perspective on their child\u27s 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

The Relationship of Transition Readiness, Self-Efficacy, and Adherence to Preferred Health Learning Method by Youths with Chronic Conditions

BACKGROUND: Health care transition preparation, medication adherence, and self-efficacy are important skills to achieve optimal healthoutcomes. It is unclear how pediatric patients with chronic conditions obtain health information that may impact the acquisition of these skills. METHODS: In this cross-sectional study, we determined the preferred sources/methods for health information among youths with chronicconditions and their relationship to health care transition readiness (STARx Questionnaire), self-efficacy (Iannotti\u27s Diabetes Management Self-efficacy Scale), and medication adherence (Morisky Medication Adherence Scale). Youths with various chronic health conditionsattending Victory Junction, a therapeutic camp, were invited to complete these online surveys. RESULTS: A total of 160 youths with different chronic conditions from multiple institutions, ages 6 to 16 years participated. Most commonly preferred sources of medical information were family/parents (n=122, 76.3%) and health care providers (n=88, 55.0%). Youths who favored family/parents had the highest medication adherence rates. In turn, youths who favored health care providers over other sources, scored highest on self-efficacy and transition readiness of all groups. CONCLUSION: Our novel findings represent important areas of intervention to improve transition readiness, self-efficacy, and medication adherence. Ascertaining the patients\u27 preferred method of learning about the disease and its management is important in order to customize and enhance health care transition readiness, self-efficacy, and medication adherence

Chronological age when healthcare transition skills are mastered in adolescents/young adults with inflammatory bowel disease

AIM: To describe the longitudinal course of acquisition of healthcare transition skills among adolescents and young adults with inflammatorybowel diseases. METHODS: We recruited adolescents and young adults (AYA) with inflammatory bowel diseases (IBD), from the pediatric IBD clinic at the University of North Carolina. Participants completed the TRxANSITION Scale™ at least once during the study period (2006-2015). We used the electronic medical record to extract participants\u27 clinical and demographic data. We used ordinary least square regressions with robust standard error clustered at patient level to explore the variations in the levels and growths of healthcare transition readiness. RESULTS: Our sample (n = 144) ranged in age from 14-22 years. Age was significantly and positively associated with both the level and growth of TRxANSITION Scale™ scores (P \u3c 0.01). Many healthcare transition (HCT) skills were acquired between ages 12 and 14 years, but others were not mastered until after age 18, including self-management skills. CONCLUSION: This is one of the first studies to describe the longitudinal course of HCT skill acquisition among AYA with IBD, providing benchmarks for evaluating transition interventions

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\u27s control (internal control) or is not in one\u27s 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 healthcare 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 (β = 0.196; P = .013) and external Doctor locus of control with doctors controlling disease (β = 0.181; P = .025) were positively associated with transitionreadiness. External control by chance or with others controlling disease was negatively associated with transition readiness (β = -0.248; P = .002) and positively associated with emergency department visits (β = 0.225; P = .004) and with number of hospital inpatient nights at hospital (β = 0.166; P = .04). CONCLUSION: Adolescents with external control of their health by chance or by other people are at increased risk for negative healthoutcomes 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