Karina Javalkar

International and Interdisciplinary Identification of Health Care Transition Outcomes

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.

Self-Management and Transition Readiness Assessment: Development, Reliability, and Factor Structure of the STARx Questionnaire

INTRODUCTION The Self-Management and Transition to Adulthood with Rx=Treatment (STARx) Questionnaire was developed to collect information on self-management and health care transition (HCT) skills, via self-report, in a broad population of adolescents and young adults (AYAs) with chronic conditions. METHODS Over several iterations, the STARx questionnaire was created with AYA, family, and health provider input. The development and pilot testing of the STARx Questionnaire took place with the assistance of 1219 AYAs with different chronic health conditions, in multiple institutions and settings over three phases: item development, pilot testing, reliability and factor structuring. RESULTS The three development phases resulted in a final version of the STARx Questionnaire. The exploratory factor analysis of the third version of the 18-item STARx identified six factors that accounted for about 65% of the variance: Medication management, Provider communication, Engagement during appointments, Disease knowledge, Adult health responsibilities, and Resource utilization. Reliability estimates revealed good internal consistency and temporal stability, with the alpha coefficient for the overall scale being .80. The STARx was developmentally sensitive, with older patients scoring significantly higher on nearly every factor than younger patients. CONCLUSION The STARx Questionnaire is a reliable, self-report tool with adequate internal consistency, temporal stability, and a strong, multidimensional factor structure. It provides another assessment strategy to measure self-management and transition skills in AYAs with chronic conditions.

Self-Management and Transition Readiness Assessment: Concurrent, Predictive and Discriminant Validation of the STARx Questionnaire

INTRODUCTION The STARx Questionnaire was designed with patient and provider input, to measure self-management and transition skills in adolescents and young adults (AYA) with chronic health conditions. With proven reliability and an empirically-based factor structure, the self-report STARx Questionnaire requires further validation to demonstrate its clinical and research utility. In this study we examine the concurrent, predictive, and discriminant validity of the STARx Questionnaire. METHODS To examine concurrent validity, the STARx Questionnaire was compared to two other published transition readiness tools. Predictive validity was examined using linear regressions between the STARx Total Score and literacy, medication adherence, quality of life, and health services use. Discriminant validity was examined by comparing the performance of three chronic illness conditions on the STARx Total Score and associated subscales. RESULTS The STARx Questionnaire and its subscales positively correlated with the scores for both transition readiness tools reflecting strong concurrent validity. The STARx Questionnaire also correlated positively with the literacy, self-efficacy, and adherence measures indicating strong predictive validity; however, it did not correlate with either quality of life or health care utilization. The performance of AYA across three different clinical conditions was not significant, indicating the clinical utility of this HCT tool for a variety of chronic health conditions. CONCLUSION The strong validity of the STARx Questionnaire, in tandem with its strong reliability, indicated adequate psychometric properties for this generic self-report measure. These strong psychometric properties should contribute to the STARx being a viable measure of health care transition for both research and clinical purposes.

Socioecologic factors as predictors of readiness for self-management and transition, medication adherence, and health care utilization among adolescents and young adults with chronic kidney disease.

Introduction 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. Methods 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). Results 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. Conclusion 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.

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.

Ecological Factors Predict Transition Readiness/Self-Management in Youth With Chronic Conditions

PURPOSE Health care transition readiness or self-management among adolescents and young adults (AYA) with chronic conditions may be influenced by factors related to their surrounding environment. METHODS Study participants were AYA diagnosed with a chronic condition and evaluated at pediatric- and adult-focused subspecialty clinics at the University of North Carolina Hospital Systems. All participants were administered a provider-administered self-management/transition-readiness tool, the UNC TRxANSITION Scale. Geographic area and associated characteristics (ecological factors) were identified for each participants ZIP code using the published U.S. Census data. The Level 1 model of the hierarchical linear regression used individual-level predictors of transition readiness/self-management. The Level 2 model incorporated the ecological factors. RESULTS We enrolled 511 AYA with different chronic conditions aged 12-31 years with the following characteristics: mean age of 20± 4 years, 45% white, 42% black, and 54% female. Participants represented 214 ZIP codes in or around North Carolina, USA. The Level 1 model showed that age, gender, and race were significant predictors of transition readiness/self-management. On adding the ecological factors in the Level 2 model, race was no longer significant. Participants from a geographic area with a greater percentage of females (β = .114, p = .005) and a higher median income (β = .126, p = .002) had greater overall transition readiness. Ecological factors also predicted subdomains of transition readiness/self-management. CONCLUSIONS In this cohort of adolescents and young adults with different chronic conditions, ecological disparities such as sex composition, median income, and language predict self-management/transition readiness. It is important to take ecological risk factors into consideration when preparing patients for health self-management or transition.

The relationship of health care transition readiness to disease-related characteristics, psychosocial factors, and health care outcomes: preliminary findings in adolescents with chronic kidney disease.

PURPOSE The current study utilized the Disability-Stress-Coping Model to conceptualize how disease-related risk factors (disease severity, age of diagnosis, and disease burden) and psychosocial resilience factors (coping efficacy, family cohesion, and quality of life) influence health care transition (HCT) readiness when controlling for age and disease severity [1]. Additionally, the impact of low HCT readiness on emergency room visits and medication adherence was examined. METHODS The sample was comprised of 41 adolescents with chronic kidney disease (CKD) who ranged in age from 13 to 18 years (Mean=15.7). Multiple regression analyses were conducted. RESULTS None of the disease-related factors were associated with HCT readiness. Of the psychosocial factors, only family cohesion was a significant predictor and accounted for 10% unique variance. Transition readiness was significantly related to both the number of self-reported emergency room visits and medication adherence such that high readiness was related to fewer visits to the emergency room and better medication adherence; these variables accounted for 6.4% and 14.9% of the unique variance respectively. CONCLUSION These findings suggest that disease-related risk factors may be less critical to predicting transition readiness than resilience factors such as family cohesion. Additionally, when adolescents have low transition readiness they are likely to experience significant negative health 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’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.

Self-Management and Health Care Use in an Adolescent and Young Adult Medicaid Population With Differing Chronic Illnesses

Introduction Few studies of adults question the validity of the claim that self-management reduces the use of health care services and, as a result, health care costs. The aim of our study was to determine the relationship between self-management and health care use in a population of adolescent and young adult recipients of North Carolina Medicaid with chronic health conditions, who received care in either the pediatric or adult clinic. Our secondary objective was to characterize the patterns of health care use among this same population. Methods One hundred and fifty adolescents or young adults aged 14 to 29 were recruited for this study. Participants completed a demographics questionnaire and the self-management subdomain of the University of North Carolina TRxANSITION Scale. Information on each participant’s emergency department and inpatient use was obtained by using the North Carolina Medicaid Provider Portal. Results This cohort had a high level of emergency health care use; average lifetime use was 3.18 (standard deviation [SD], 5.58) emergency department visits, 2.02 (SD, 3.42) inpatient visits, and 12.5 (SD, 23.9 ) days as an inpatient. Age group (pediatric or adult), diagnosis, race/ethnicity, and sex were controlled for in all analyses. Results indicate that patients with a high rate of disease self-management had more emergency department visits and hospitalizations and a longer length of stay in the hospital than did those with a low rate. Conclusion In a group of North Carolina Medicaid recipients with chronic conditions, better self-management is associated with more health care use. This is likely the result of many factors, including more interactions with health care professionals, greater ability to recognize the need for emergency medical attention, and the use of the emergency department for primary health care.

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.