Eniko Rak

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 inflammatory bowel 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’ 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 < 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.

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’s 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’s 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‐report measure of parent perspective on their childs 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 (&agr; = 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. Highlights:Initial reliability of the STARx‐P and STARx Questionnaires has been demonstrated.These self‐report surveys can be used by providers to assess transition readiness of adolescents.The parental proxy report can give unique insight relating parent and adolescent perspectives.

Community participation of persons with disabilities: volunteering, donations and involvement in groups and organisations

Abstract Purpose: This study examined similarities and differences between persons with and without disabilities on volunteering, donations and group participation. Method: A sample of 1548 individuals participated and 60% of the sample were persons with disabilities. Data for this research was drawn from a major statewide survey in a Midwestern state in the United States. Community participation was measured through involvement with civic, religious and other community-based groups, volunteering activities and donations. Logistic regression was pursued to test the effect of disability on community participation. Results: Findings support different trends in participation between persons with and without disabilities. Individuals without disabilities are more likely to volunteer, donate money and participate in civic organisations (e.g. clubs) and other groups. Employment and household income have a significant contribution in explaining these differences. Conclusions: This study found significant differences in community participation between persons with disabilities and persons without disabilities. Regression analysis outcomes underscore the importance of employment and income in eliminating disparities in community involvement between persons with and without disabilities. Implications for Rehabilitation Policy change in rehabilitation agencies to fund supported volunteering services. Improve the representation of persons with disabilities in volunteering pursuits by making volunteering positions accessible to them (educate persons with disabilities to be more aware of these opportunities, provide reasonable accommodations at work sites, etc.). Educate stakeholders about the benefits of volunteering and being part of civic, and other community based groups in improving the quality of life of persons with disabilities. Identification of barriers for persons with disabilities in these pursuits (physical and attitudinal barriers, lack of resources). Identifying and utilising natural supports in the work site for persons with disabilities to receive peer support on the job from full-time employees.

Health and Nutrition Literacy and Adherence to Treatment in Children, Adolescents, and Young Adults With Chronic Kidney Disease and Hypertension, North Carolina, 2015

Introduction Adherence to treatment and dietary restrictions is important for health outcomes of patients with chronic/end-stage kidney disease and hypertension. The relationship of adherence with nutritional and health literacy in children, adolescents, and young adults is not well understood. The current study examined the relationship of health literacy, nutrition knowledge, nutrition knowledge–behavior concordance, and medication adherence in a sample of children and young people with chronic/end-stage kidney disease and hypertension. Methods We enrolled 74 patients (aged 7–29 y) with a diagnosis of chronic/end-stage kidney disease and hypertension from the University of North Carolina Kidney Center. Participants completed instruments of nutrition literacy (Disease-Specific Nutrition Knowledge Test), health literacy (Newest Vital Sign), nutrition behavior (Nutrition Knowledge–Behavior Concordance Scale), and medication adherence (Morisky Medication Adherence Scale). Linear and binary logistic regressions were used to test the associations. Results In univariate comparisons, nutrition knowledge was significantly higher in people with adequate health literacy. Medication adherence was related to nutrition knowledge and nutrition knowledge–behavior concordance. Multivariate regression models demonstrated that knowledge of disease-specific nutrition restrictions did not significantly predict nutrition knowledge–behavior concordance scores. In logistic regression, knowledge of nutrition restrictions did not significantly predict medication adherence. Lastly, health literacy and nutrition knowledge–behavior concordance were significant predictors of medication adherence. Conclusion Nutrition knowledge and health literacy skills are positively associated. Nutrition knowledge, health literacy, and nutrition knowledge–behavior concordance are positively related to medication adherence. Future research should focus on additional factors that may predict disease-specific nutrition behavior (adherence to dietary restrictions) in children and young people with chronic conditions.

Longitudinal Self-Management and/or Transition Readiness per the TRANSITION 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 fathers education and negatively by mothers education and duration of diagnosis. Gains in scores further varied positively with private insurance and negatively with mothers 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.

Employment Outcomes in Persons With Diabetes The Role of Health Literacy and Diabetes Management Self-Efficacy

Low health literacy is common among adults and is related to adverse health outcomes. It also impacts health management and one’s ability to control his or her chronic illness. The current study examined the association of health literacy and diabetes management self-efficacy with employment among 126 individuals with diabetes. No relationship was found between health literacy and employment. Diabetes-management self-efficacy was not directly related to employment but it was indirectly linked to it through physical health and lack of interference of diabetes with activities of daily living. This research suggests that strategies to improve self-efficacy may contribute to improved health and employment outcomes. Implications for rehabilitation counseling practice and research are discussed.