Insight into the Role of the Child Opportunity Index on Surgical Outcomes in Congenital Heart Disease.

OBJECTIVE: To use neighborhood-level Child Opportunity Index (COI) measures to investigate disparities in congenital heart surgery postoperative outcomes and identify potential targets for intervention. STUDY DESIGN: 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. RESULTS: 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. CONCLUSIONS: 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 self-management and transition manual "ALL YOU NEED IS LOVE" for adolescents with chronic kidney disease.

PURPOSE: To examine the effects of "ALL YOU NEED IS LOVE", a novel six-week, self-directed patient education manual designed to improve chronic kidney disease knowledge/self-management, health care transition readiness, self-advocacy, and mindfulness skills among adolescents with chronic kidney disease. DESIGN AND METHODS: We enrolled 49 adolescents aged 11-17 years (mean age 14.7 ± 1.9; 53.1% males) from a university hospital kidney center who had CKD stages 3 and greater, who were randomly assigned into the "ALL YOU NEED IS LOVE" patient education only group (n = 31) or the "ALL YOU NEED IS LOVE" patient education plus mindfulness training group (n = 18). Participants completed Qualtrics surveys at baseline, post-intervention, and three-month follow-up. The survey included measures of outcome variables (i.e., self-management/transition readiness, patient self-advocacy, and mindfulness), and an additional demographic questionnaire was included in the baseline survey. Multilevel model analyses were used to examine the effects of group and time on the outcome variables. RESULTS: Multilevel model analyses showed an overall significant time effect across all outcome variables in both groups. However, the group effects were not statistically significant across the outcome variables. CONCLUSIONS: Both interventions significantly increased participants' self-management/HCT readiness, self-advocacy, and mindfulness over time. Mindfulness training may not bring additional benefits to the "ALL YOU NEED IS LOVE" education manual. PRACTICE IMPLICATIONS: Pediatric nurses and clinicians may utilize the self-directed "ALL YOU NEED IS LOVE" manual to increase self-management/transition readiness, self-advocacy, and mindfulness among adolescents with chronic kidney disease.

Clinical response to lifestyle counseling for dyslipidemia and elevated blood pressure in childhood cancer survivors.

BACKGROUND: Childhood cancer survivors (CCS) have increased risk of premature cardiovascular disease. Whether they respond similarly to lifestyle changes for elevated blood pressure (BP), body mass index (BMI), and dyslipidemia to those without history of childhood cancer is unknown. PROCEDURE: This retrospective cohort study included CCS and 3:1 age- and sex-matched controls treated at Boston Children's Hospital Preventive Cardiology (2010-2019) using lifestyle management based on National Heart, Lung, and Blood Institute (NHLBI) guidelines. Change in BMI, BP, and lipids were analyzed. RESULTS: We included 52 CCS and 162 controls with a median age of approximately 16 years. More CCS (84.3%) had elevated baseline fasting triglycerides (TG) than controls (49.4%) (p < .001). More CCS (62.5%) also had abnormal baseline high-density lipoprotein cholesterol (HDL-C) compared to controls (35.2%) (p = .001). Baseline BMI, BP, total cholesterol (TC), and low-density lipoprotein cholesterol (LDL-C) were similar between groups. Over 15 weeks [IQR: 10.5-26], CCS had greater decrease in TG than controls (72.5 vs. 17 mg/dl decrease, p = .095). BP improved in 5% of CCS versus 38% of controls (p = .008). For both, BMI, TC, LDL-C, and HDL-C remained stable. CCS with stem cell transplantation (SCT) had a TC increase of 5% (6 mg/dl) compared to a decrease of 9% (19 mg/dl) among CCS without SCT (p = .02). CONCLUSIONS: CCS demonstrated similar improvement in lipids, but impaired BP lowering in response to lifestyle management compared to controls. Further prospective studies are needed to determine if earlier pharmaceutical treatment is warranted in this higher risk population and for the long-term risk reductions of these approaches.

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.

Socioeconomic and Racial and/or Ethnic Disparities in Multisystem Inflammatory Syndrome.

OBJECTIVES: To characterize the socioeconomic and racial and/or ethnic disparities impacting the diagnosis and outcomes of multisystem inflammatory syndrome in children (MIS-C). METHODS: This multicenter retrospective case-control study was conducted at 3 academic centers from January 1 to September 1, 2020. Children with MIS-C were compared with 5 control groups: children with coronavirus disease 2019, children evaluated for MIS-C who did not meet case patient criteria, children hospitalized with febrile illness, children with Kawasaki disease, and children in Massachusetts based on US census data. Neighborhood socioeconomic status (SES) and social vulnerability index (SVI) were measured via a census-based scoring system. Multivariable logistic regression was used to examine associations between SES, SVI, race and ethnicity, and MIS-C diagnosis and clinical severity as outcomes. RESULTS: Among 43 patients with MIS-C, 19 (44%) were Hispanic, 11 (26%) were Black, and 12 (28%) were white; 22 (51%) were in the lowest quartile SES, and 23 (53%) were in the highest quartile SVI. SES and SVI were similar between patients with MIS-C and coronavirus disease 2019. In multivariable analysis, lowest SES quartile (odds ratio 2.2 [95% confidence interval 1.1-4.4]), highest SVI quartile (odds ratio 2.8 [95% confidence interval 1.5-5.1]), and racial and/or ethnic minority background were associated with MIS-C diagnosis. Neither SES, SVI, race, nor ethnicity were associated with disease severity. CONCLUSIONS: Lower SES or higher SVI, Hispanic ethnicity, and Black race independently increased risk for MIS-C. Additional studies are required to target interventions to improve health equity for children.

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.

Disparities in Health Literacy and Healthcare Utilization among Adolescents and Young Adults with Chronic or End-stage Kidney Disease.

PURPOSE: Low health literacy adversely affects health outcomes in adults with chronic kidney disease. The current study examined associations between limited/inadequate health literacy and health services utilization among adolescents and young adults (AYA) with chronic or end-stage kidney disease (CKD or ESKD). DESIGN AND METHODS: This was a retrospective cohort study that enrolled patients from both the pediatric- and adult-focused nephrology clinics of a major university hospital. Demographic information, patients' health literacy and numeracy skills (Newest Vital Sign), and health services utilization (emergency department visits, preventable hospitalizations, total hospitalizations, and length of stay in the hospital) were evaluated. A negative binomial regression model for counts tested the association between AYA patients' literacy/numeracy skills and health services utilization. RESULTS: The study enrolled 142 participants, 66 (46.5%) patients from adult nephrology and 76 (53.5%) from pediatric nephrology clinics, with a mean age of 20.8±5.60years (range 12-31). Half of the sample (n=72, 51%) had limited health literacy skills. Health literacy/numeracy level was not significantly associated with total hospitalizations, preventable hospitalizations, emergency department (ED) visits, or length of hospital stay. However, public insurance/self-pay, minority race, and kidney transplant/dialysis diagnoses were associated with more preventable hospitalizations. CONCLUSIONS: Among AYA with CKD/ESKD, there were no differences between the low and adequate health literacy groups on health care utilization outcomes when modeling clinical outcomes (total hospitalizations, preventable hospitalizations, ED visits, and length of hospital stay) after adjusting for demographics and disease type. This suggests that other factors warrant consideration in healthcare utilization rates.

Reason for Referral Predicts Utilization and Perceived Impact of Early Intervention Services.

OBJECTIVE: Children participating in early intervention (EI) vary in their medical needs and degree of delay, and previous studies have shown significant differences in EI enrollment based on the reason for referral. The effect of reason for referral on service provision and family satisfaction is largely unknown. METHODS: We used data from the National Early Intervention Longitudinal Study for our secondary data analysis. The main predictor was the reason for referral: a diagnosed condition, documented developmental delay, or other risk factors. Outcomes included unmet service needs, program dropout, and family satisfaction with services. RESULTS: The 2966 participants were mostly white (51.9%), male (60.3%), and had an annual household income at or below $50,000 (77.0%). There were 1924 referred due to diagnosis, 691 due to delay, and 351 due to other risks. Compared with the diagnosis group, children with delays were more likely (adjusted odds ratio [aOR] 1.38, 95% confidence interval [CI], 1.02-1.87) to have unmet service needs and to drop out of EI programs (aOR 1.44, 95% CI, 1.07-1.96); their families were less likely to report that services were highly individualized (aOR 0.80, 95% CI, 0.65-0.98) or had an impact on their children's development (aOR 0.77, 95% CI, 0.62-0.96). CONCLUSION: Children participating in EI because of developmental delays are more likely to have unmet service needs, drop out of services because of a reason other than ineligibility (family or child-related reason), and have lower caregiver satisfaction than those participating because of diagnosed conditions. It is important to determine reasons for these differences and their impact on developmental 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 (ß = 0.161, p = 0.047), a diagnosis of attention-deficit/hyperactivity disorder (ADHD) in addition to the primary medical condition (ß = 0.216, p = 0.008), frequent visits with a primary care provider (PCP) (ß = 0.209, p = 0.026) and emergency room (ER) visits (ß = 0.197, p = 0.038), and lower child self-efficacy (ß = -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.

Cognitive remediation in pediatric chronic kidney disease and end-stage kidney disease: rationale, candidate interventions, and applicability.

The purpose of this paper is to address the potential use of cognitive remediation interventions for children and adolescents with chronic kidney disease (CKD) and end-stage kidney disease (ESKD). The prevalence and risk for neurocognitive dysfunction in children with this condition remains high, but, to date, interventions targeting these challenges have not been attempted either individually or as part of a larger treatment program. This is the next logical step in addressing the neurocognitive dysfunction that can be present in pediatric CKD/ESKD, with the field needing to determine the efficacy of cognitive remediation approaches for this population. To our knowledge, this paper is the first to raise this possibility by identifying candidate treatments addressing the neurocognitive challenges observed in children and adolescents with CKD/ESKD. Initially, we present the rationale for the importance of addressing the cognitive difficulties in this population, including an overview of the literature documenting the neurocognitive deficits associated with pediatric-onset CKD/ESKD. This is followed by a review of five candidate cognitive remediation programs that may be applicable to patients with this condition, and associated factors that could affect such treatment. The paper concludes with suggestions for both clinical and research initiatives that could be implemented to examine cognitive remediation as potential components of a larger treatment program for children and adolescents with CKD/ESKD.

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

The association between educational resource utilization and knowledge/self-management among patients with Type 2 Diabetes in Pune, India.

AIMS: Patients utilize a variety of sources to learn about their condition. This study assessed the association of these resources with patient knowledge, adherence, and physiologic outcomes. METHODS: Adults with Type 2 diabetes recruited at an outpatient clinic in Pune, India provided IRB-approved consent and completed surveys measuring diabetes knowledge, self-management, and educational resource utilization. Lab values were obtained from the patient's medical record. Statistical analysis was conducted in SPSS to determine the association between educational resources and outcomes. RESULTS: We enrolled 82 patients with a mean age of 58.3 years. The most commonly used resource was books/pamphlets. The use of television and books/pamphlets as sources of information was significantly associated with greater knowledge and self-management. Use of books and pamphlets and peers with diabetes was associated with lower fasting and postprandial blood glucose. Regression analyses controlling for age, gender, and years with diabetes revealed that use of newspapers and magazines, books and pamphlets, and television were predictors of overall diabetes knowledge and nutrition knowledge. The use of television as a source of information was a predictor of the hours exercised per week. CONCLUSIONS: Resources such as books and pamphlets, newspapers and magazines, and television are common ways that people with diabetes learn about their medical conditions. The use of television as a source of information predicted the greatest number of positive outcomes among patients, followed by use of books and pamphlets. These methods should be further explored in order to understand how their benefit may be maximized for patients.

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.

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 participant's 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 (ß = .114, p = .005) and a higher median income (ß = .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 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 health outcomes. 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 chronic conditions and their relationship to health care transition readiness (STARx Questionnaire), self-efficacy (Iannotti's Diabetes Management Self-efficacy Scale), and medication adherence (Morisky Medication Adherence Scale). Youths with various chronic health conditions attending 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' 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.

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.

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.