Socioeconomic Factors that Affect Self-Management and Transition into Adult Care in Adolescents with Type I Diabetes

Effective transition from pediatric to adult health care during adolescence is crucial for patients with type 1 diabetes to insure adequate disease self-management in adulthood. To improve program delivery, it is important to understand if other socioeconomic barriers impede in successful transition preparation. To examine whether socioeconomic factors such as race, health insurance, and income affect diabetes self-management and transition readiness. The Transition Readiness Assessment in Diabetes (TRAiD), a self-assessment tool that covers diabetes self-management, health insurance, and future plans, was administered to all patients aged 14 and over. We generated a scale to measure readiness (0-8, higher value = higher transition readiness). We describe the differences in disease self-management, transition readiness, and whether outcomes vary by race, insurance status and income. There were 179 surveys completed. Mean readiness for all age groups was 5.9. We find a negative trend towards lower readiness in Hispanics (mean 5.4 vs whites mean 6.0, p=0.06), patients on public insurance (mean 5.7 vs mean 6.0 for private insurance, p = 0.2), and patients from lower income brackets (mean 5.9 for lowest income vs 6.1 for highest income, p = 0.6). Targeted intervention or additional support may be required for Hispanics. While there is a trend towards lower readiness in poor and publically insured patients, further evaluation is required to see if these factors are significant in a larger population

Care Coordination and Comprehensive Electronic Health Records are Associated with Increased Transition Planning Activities

OBJECTIVE: Youth with Special Health Care Needs (YSHCN) require assistance from their pediatricians to transition to adult care. There is little data on what transition resources pediatricians have. This paper studies if care coordination and/or comprehensive electronic health record (CEHR) implementation are associated with improved transition processes. METHODS: Using AAP Periodic Survey #79, we report whether practices generated written transition plans, assisted in finding adult providers, and discussed confidentiality issues. Descriptive statistics and a logistic regression model were done to evaluate whether CEHR, care coordination, or practice and physician characteristics improve transition planning. RESULTS: Transition planning support in practices is low. Pediatricians with any care coordinator report more written transition plans for YSHCN (23% vs. 6%, p\u3c0.001), assistance identifying adult providers (59% vs. 39%, p\u3c0.001), and discussing confidentiality issues (50% vs. 33%, p\u3c0.001). Pediatricians with a CEHR compared to those without are more likely to report written transition plans for YSHCN (24% vs. 12 % p\u3c0.05) and discussing confidentiality issues (51% vs. 39%, p\u3c0.05). In the logistic regression model, having care coordination (AOR 11.1, 95% CI 5.9-21.3) and CEHR (AOR 2.6, 95% CI 1.5-5.0) are independently associated with higher odds of having a written transition plan. CONCLUSIONS: Only 1 in 5 pediatricians have a transition coordinator in their practice and just 15% have a CEHR, even as these resources are associated with improved transition processes for YSHCN. Policy decisions should be made to help practices with supports, such as care coordination and EHR implementation, in order to improve transitions to adulthood

Parent Perception of Their Child’s Asthma Control and Concurrent Complementary and Alternative Medicine Use

We conducted a cross-sectional survey of 1322 parents of children with asthma to measure the prevalence and factors associated with complementary and alternative medicine (CAM) use for pediatric asthma. Multivariate regression techniques were used to determine factors associated with CAM use. Eleven percent (141/1322) of children were given CAM. Parents of children on daily medications who were perceived to have poor asthma control were almost three times more likely to use CAM than parents of children on no daily medications who were perceived to have high asthma control (risk ratio: = 2.81; confidence interval: 1.72, 4.60); age, gender, race, income, and education level were not significant independent predictors. Parent perception of asthma control is significantly associated with CAM use. It is important for providers to elicit information regarding CAM use in the clinic, as this may imply that the asthma symptoms may not be well controlled.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/63130/1/pai.2008.0503.pd

Adults with childhood-onset chronic conditions admitted to US pediatric and adult intensive care units

PURPOSE: To compare demographics, intensive care units (ICU) admission characteristics, and ICU outcomes among adults with childhood-onset chronic conditions (COCC) admitted to U.S. pediatric and adult ICUs. MATERIALS AND METHODS: Retrospective cross-sectional analyses of 6,088 adults aged 19–40 years admitted in 2008 to 70 pediatric ICUs that participated in the Virtual Pediatric Intensive Care Unit Performance Systems and 50 adult ICUs that participated in Project IMPACT. RESULTS: COCC were present in 53% of young adults admitted to pediatric units, compared to 9% of those in adult units. The most common COCC in both groups were congenital cardiac abnormalities, cerebral palsy, and chromosomal abnormalities. Adults with COCC admitted to pediatric units were significantly more likely to be younger, have lower functional status, and be non-trauma patients than those in adult units. The median ICU length-of-stay was 2 days and the intensive care unit mortality rate was 5% for all COCC patients with no statistical difference between pediatric or adult units. CONCLUSIONS: There are marked differences in characteristics between young adults with COCC admitted to PICUs and adult ICUs. Barriers to accommodating these young adults may be reasons why many such adults have not transitioned from pediatric to adult critical care

Self-management skills in adolescents with chronic rheumatic disease: A cross-sectional survey

<p>Abstract</p> <p>Background</p> <p>For adolescents with a diagnosis of lifelong chronic illness, mastery of self-management skills is a critical component of the transition to adult care. This study aims to examine self-reported medication adherence and self-care skills among adolescents with chronic rheumatic disease.</p> <p>Methods</p> <p>Cross-sectional survey of 52 adolescent patients in the Pediatric Rheumatology Clinic at UCSF. Outcome measures were self-reported medication adherence, medication regimen knowledge and independence in health care tasks. Predictors of self-management included age, disease perception, self-care agency, demographics and self-reported health status. Bivariate associations were assessed using the Student's t-test, Wilcoxon rank sum test and Fisher exact test as appropriate. Independence in self-management tasks were compared between subjects age 13-16 and 17-20 using the chi-squared test.</p> <p>Results</p> <p>Subjects were age 13-20 years (mean 15.9); 79% were female. Diagnoses included juvenile idiopathic arthritis (44%), lupus (35%), and other rheumatic conditions (21%). Mean disease duration was 5.3 years (SD 4.0). Fifty four percent reported perfect adherence to medications, 40% reported 1-2 missed doses per week, and 6% reported missing 3 or more doses. The most common reason for missing medications was forgetfulness. Among health care tasks, there was an age-related increase in ability to fill prescriptions, schedule appointments, arrange transportation, ask questions of doctors, manage insurance, and recognize symptoms of illness. Ability to take medications as directed, keep a calendar of appointments, and maintain a personal medical file did not improve with age.</p> <p>Conclusions</p> <p>This study suggests that adolescents with chronic rheumatic disease may need additional support to achieve independence in self-management.</p

Post-intervention Status in Patients With Refractory Myasthenia Gravis Treated With Eculizumab During REGAIN and Its Open-Label Extension

OBJECTIVE: To evaluate whether eculizumab helps patients with anti-acetylcholine receptor-positive (AChR+) refractory generalized myasthenia gravis (gMG) achieve the Myasthenia Gravis Foundation of America (MGFA) post-intervention status of minimal manifestations (MM), we assessed patients' status throughout REGAIN (Safety and Efficacy of Eculizumab in AChR+ Refractory Generalized Myasthenia Gravis) and its open-label extension. METHODS: Patients who completed the REGAIN randomized controlled trial and continued into the open-label extension were included in this tertiary endpoint analysis. Patients were assessed for the MGFA post-intervention status of improved, unchanged, worse, MM, and pharmacologic remission at defined time points during REGAIN and through week 130 of the open-label study. RESULTS: A total of 117 patients completed REGAIN and continued into the open-label study (eculizumab/eculizumab: 56; placebo/eculizumab: 61). At week 26 of REGAIN, more eculizumab-treated patients than placebo-treated patients achieved a status of improved (60.7% vs 41.7%) or MM (25.0% vs 13.3%; common OR: 2.3; 95% CI: 1.1-4.5). After 130 weeks of eculizumab treatment, 88.0% of patients achieved improved status and 57.3% of patients achieved MM status. The safety profile of eculizumab was consistent with its known profile and no new safety signals were detected. CONCLUSION: Eculizumab led to rapid and sustained achievement of MM in patients with AChR+ refractory gMG. These findings support the use of eculizumab in this previously difficult-to-treat patient population. CLINICALTRIALSGOV IDENTIFIER: REGAIN, NCT01997229; REGAIN open-label extension, NCT02301624. CLASSIFICATION OF EVIDENCE: This study provides Class II evidence that, after 26 weeks of eculizumab treatment, 25.0% of adults with AChR+ refractory gMG achieved MM, compared with 13.3% who received placebo

Profiling health and health-related services for children with special health care needs with and without disabilities.

ObjectiveThe aims of this study were to profile and compare the health and health services characteristics for children with special health care needs (CSHCN), with and without disabilities, and to determine factors associated with unmet need.MethodsSecondary data analysis of the 2005-2006 National Survey of Children with Special Health Care Needs was conducted. The sociodemographics, health, and health services of CSHCN with and without disabilities were compared. Multivariable logistic regression was employed to examine factors associated with unmet need for health services.ResultsChildren from minority racial and ethnic groups and children living in or near poverty were over-represented among CSHCN with disabilities, compared with other CSHCN. Statistically higher percentages of CSHCN with disabilities had behavioral problems (39.6% vs 25.2%), anxiety/depressed mood (46.1% vs 24.0%), and trouble making/keeping friends (38.1% vs 15.6%) compared with other CSHCN. Thirty-two percent of CSHCN with disabilities received care in a medical home compared with 51% of other CSHCN. CSHCN with disabilities had higher rates of need and unmet need than other CSHCN for specialty care, therapy services, mental health services, home health, assistive devices, medical supplies, and durable medical equipment. The adjusted odds of unmet need for CSHCN with disabilities were 71% higher than for other CSHCN.ConclusionCSHCN with disabilities had more severe health conditions and more health services need, but they less commonly received care within a medical home and had more unmet need. These health care inequities should be amenable to policy and health service delivery interventions to improve outcomes for CSHCN with disabilities

Multi-institutional profile of adults admitted to pediatric intensive care units.

ImportanceGrowing numbers of persons with childhood-onset chronic illnesses are surviving to adulthood. Many use pediatric hospitals for their inpatient needs. To our knowledge, the prevalence and characteristics of adult pediatric intensive care unit patients have not been reported.ObjectivesTo estimate the proportion of adults admitted to pediatric intensive care units (PICUs), characterize them, and compare them with older adolescents.DesignOne-year cross-sectional analysis.SettingPediatric intensive care units in the United States that participated in the Virtual Pediatric Intensive Care Unit Systems.ParticipantsPediatric intensive care unit patients 15 years or older admitted in 2008.Main outcome measuresWe compared adults with adolescents across clinical characteristics and outcomes. Mixed-effects logistic regression was used to estimate the independent association of age with PICU mortality.ResultsSeventy PICUs had 67 629 admissions; 1954 admissions (2.7%) were patients 19 years or older; and 9105 admissions (13.5%) were patients aged 15 to 18 years. The proportion of adults (≥19 years) varied considerably by PICU (range, 0%-9.2%). As age increased, the proportion of patients who had a complex chronic condition and planned or perioperative admissions increased; the proportion of trauma-related admissions decreased. Patients aged 21 to 29 years had a 2 times (95% CI, 1.3-3.2; P = .004) greater odds of PICU mortality compared with adolescent patients, after adjusting for Paediatric Index of Mortality score, sex, trauma, and having a complex chronic condition. Being 30 years or older was associated with a 3.5 (95% CI, 1.3-9.7; P = .01) greater odds of mortality.Conclusions and relevanceIn this multi-institutional study, adults constituted a small but high-risk proportion of patients in some PICUs, suggesting that these PICUs should have plans and protocols specifically focused on this group