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OBJECTIVE: Despite long-standing racial and ethnic disparities in autism spectrum (AS) diagnosis, recent research suggests that overall, greater numbers of Black and Latine children are now diagnosed with AS as compared with non-Latine White (NLW) children in some US regions. However, gaps remain in the equitable detection of Black and Latine children with AS without significant developmental impairment. The objective of this study was to determine whether the clinical profiles of young children evaluated for AS across a statewide system of early autism diagnosis in Indiana vary by race and ethnicity. METHODS: We examined racial and ethnic differences in: (1) AS symptom severity, (2) developmental functioning, (3) adaptive functioning, and (4) behavior problems in a sample of 147 children, aged 14 to 48 months (M = 2.6 years), referred for AS evaluation. RESULTS: Clinical profiles of young children evaluated differed significantly by race and ethnicity, with Black and Latine children exhibiting lower developmental (p = 0.008) and adaptive abilities (p = 0.01) and higher AS symptoms (p = 0.03) as compared with NLW children. CONCLUSION: Potential explanations for findings include racial and ethnic differences in family and community awareness and knowledge about AS and follow-through on evaluation referral, both driven by social determinants of health (SDOH) affecting minoritized children. Bias in screening and assessment instruments and clinician surveillance, screening, and referral practices may also underlie differences in clinical profiles of children evaluated. Future research is needed to understand the SDOH that influence AS detection and diagnosis to improve equitable access to early diagnosis and intervention.
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OBJECTIVES: Some pediatric institutions have developed adult inpatient services to enable quality care of hospitalized adults. Our objectives were to understand the characteristics of these adult inpatient services in pediatric hospitals, barriers and facilitators to their creation and sustainability, and patient and system needs they addressed. METHODS: An explanatory mixed methods study was conducted using a distribution of an electronic survey followed by targeted semi-structured interviews of directors (or designates) of adult inpatient services in US pediatric hospitals. The survey identified institutional demographics, service line characteristics, and patient populations. An interview guide was created to explore survey findings and facilitators and barriers in the creation of adult inpatient services. Interviews were conducted after survey completion. A codebook was created using an inductive thematic approach and iteratively refined. Final themes were condensed, and illustrative quotes selected. RESULTS: Ten institutions identified as having an adult inpatient service. Service staffing models varied, but all had dually trained internal medicine and pediatrics physicians. All participants voiced their respective pediatric institutions valued that these services filled a clinical care gap for hospitalized adults adding to whole-person care, patient safety, and health system navigation. CONCLUSIONS: Adult inpatient services in pediatric institutions have been present for >15 years. These services address clinical care gaps for adults hospitalized in pediatric institutions and use specialized internal medicine and pediatrics knowledge. Demonstrating return on investment of these services using a traditional fee for service model is a barrier to creation and sustainability.
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Hospitals, Pediatric , Inpatients , Child , Humans , Adult , Palliative CareABSTRACT
PURPOSE: Nearly 20% of U.S. children have special healthcare needs (CSHCN). Difficulties experienced with navigating the array of services for these children has highlighted the value of care coordination to improve care, reduce costs and increase satisfaction. This study evaluated the services delivered within a care coordination program at a transition consultation center for CSHCN. It also compared the advancement of youth by age group toward graduation criteria. DESIGN AND METHODS: Using a program evaluation method, data were collected via a retrospective chart review. The convenience sample included clinical records from 100 patients aged 11-22 who had a chronic disease or disability. RESULTS: The comparison of services for those with diagnoses of autism spectrum disorder, cerebral palsy and Down syndrome were uniformly high in supporting primary care and health care financing. Medicaid waiver assistance was provided more frequently to younger adolescents while older adolescents more commonly received support in all other graduation criteria, including primary and specialty care, healthcare financing and decision-making supports. CONCLUSIONS: Youth served in a transition care coordination program receive a high volume and broad array of services. There are some variations in the types of services by diagnosis and level of support need. Older youth show greater advancement toward graduation criteria. PRACTICE IMPLICATIONS: This in-depth chart review provides a valuable description of the activities of care coordinators serving CSHCN enduring transition. It enables development of targeted strategies for building care coordination programming and sets an example for the design of future research studies on this topic.
Subject(s)
Autism Spectrum Disorder , Child Health Services , Disabled Children , Adolescent , Child , Delivery of Health Care , Health Services Needs and Demand , Humans , Program Evaluation , Retrospective Studies , United StatesABSTRACT
BACKGROUND AND OBJECTIVES: The transition from pediatric to adult health care is a vulnerable period for youth with special health care needs. Although successful transitions are recognized as critical for improving adult outcomes and reducing health care utilization and cost, an educational gap in health care transitions for physicians persists. Our aim with this project was to develop a national health care transition residency curriculum for primary care physicians, using an expert-based, consensus-building process. METHODS: Medical professionals with expertise in health care transition were recruited to participate in a survey to assist in the development of a health care transition curriculum for primary care physicians. By using a modified Delphi process, curricular goals and objectives were drafted, and participants rated the importance of each objective, feasibility of developing activities for objectives, and appropriateness of objectives for specified learners. Mean and SDs for each response and percent rating for the appropriateness of each objective were calculated. RESULTS: Fifty-six of 246 possible respondents participated in round 1 of ratings and 36 (64%) participated in the second round. Five goals with 32 associated objectives were identified. Twenty-five of the 32 objectives (78%) were rated as being appropriate for "proficient" learners, with 7 objectives rated as "expert." Three objectives were added to map onto the Got Transition guidelines. CONCLUSIONS: The identified goals and objectives provide the foundation and structure for future curriculum development, facilitating the sharing of curricular activities and evaluation tools across programs by faculty with a range of expertise.
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Curriculum/trends , Goals , Internship and Residency/trends , Primary Health Care/trends , Transition to Adult Care/trends , Adolescent , Delphi Technique , Female , Humans , Internship and Residency/methods , Male , Primary Health Care/methods , Young AdultABSTRACT
PURPOSE: This article reports the ongoing work of a statewide transition support program which serves youth ages 11 to 22 with medically complex conditions and socially complex lives. METHODS: Seven years of transition support services have led to program evolution demonstrated via a descriptive summary of the patients along with both families' and primary care providers' responses to satisfaction surveys. An illustrative case is used to highlight the types of expertise needed in specialized transition service delivery for patients with significant complexity. The team's analysis of their transdisciplinary work processes further explains the work. RESULTS: Nearly three hundred youth with complex needs are served yearly. Families and primary care providers express high satisfaction with the support of the services. The case example shows the broad array of transition-specific services engaged beyond the usual skill set of pediatric or adult care coordination teams. Transdisciplinary team uses skills in collaboration, support, learning, and compromise within a trusting and respectful environment. They describe the shared responsibility and continuous learning of the whole team. CONCLUSIONS: Youth with complex medical conditions and complex social situations are at higher risk for problems during transition. Serving this population with a transdisciplinary model is time consuming and requires advanced expertise but, with those investments, we can meet the expectations of the youth, their families and primary care providers. Successful transdisciplinary teamwork requires sustained and focused investment. Further work is needed to describe the complexity of this service delivery along with distinct transition outcomes and costs comparisons.
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Adolescent Health Services/organization & administration , Chronic Disease/therapy , Health Plan Implementation/organization & administration , Patient Care Team/organization & administration , Transition to Adult Care/organization & administration , Adolescent , Child , Chronic Disease/psychology , Delivery of Health Care/organization & administration , Female , Humans , Interdisciplinary Communication , Male , Program Evaluation , Retrospective Studies , Surveys and Questionnaires , United States , Vulnerable Populations/statistics & numerical data , Young AdultABSTRACT
PURPOSE: Significant gaps in care and limited existing models establish the need to innovate systems of care for youth with special health care needs in the transition between pediatric to adult health care settings. METHODS: Using implementation science, a statewide transition support program was created. University and community partners explored needs and adopted a strategic plan and funding sources. The existing consensus statement provided a framework. A team was hired, policies were piloted and the initial ambulatory consultative transition service for youth with special needs ages 11 to 22 was launched. Full program activities during year four were analyzed. RESULTS: During 2011, there were 139 consultations for youth with intellectual disability and/or physical disability (average 16.74 years, 46% female). Services include routine and focused co-morbidity screening and recommendations, care coordination of complex health and community service needs, and support for families. The evolving transdisciplinary team adapted their methods to collaborate with a growing population of youth and primary care providers. CONCLUSION: A statewide transition support program is a viable delivery model to provide needed resources for youth, families and primary care practices. Weekly improvement meetings continue to adapt services to sustain family satisfaction and community provider satisfaction.
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Chronic Disease/rehabilitation , Delivery of Health Care/organization & administration , Disabled Persons/rehabilitation , Health Services for Persons with Disabilities/organization & administration , Intellectual Disability/rehabilitation , Transition to Adult Care/organization & administration , Adolescent , Child , Female , Humans , Male , Young AdultABSTRACT
PURPOSE: To assess the health, functional characteristics, and health care service needs of youth and young adults with special health care needs attending a comprehensive, noncategorical transition program. METHODS: A self-administered survey was developed from national health surveys and clinical experience to assess concepts identified as important for successful transition to adulthood. Surveys were mailed to 198 parents of youth and young adults with special health care needs attending the transition clinic. Parents were asked about the youth's health, functional status, and health care services needed. The clinical database provided demographic and patient health characteristics. Results were compared against the 2005-2006 National Survey of Children with Special Health Care Needs. RESULTS: Forty-four percent of surveys were returned. Average age of youth was 17.5 (11-22) years old and diagnoses included cerebral palsy (36%), spina bifida (10%), developmental delay or Down syndrome (17%), and autism (6%). Most youth needed assistance with personal care (69%) and routine needs (91%) and used assistive devices (59%). Compared with the 2005-2006 National Survey of Children with Special Health Care Needs, parents reported higher needs for all services except mental health care and tobacco or substance use counseling. Forty three percent reported at least one unmet health need. Few parents reported the need for counseling on substance use (1%), sexual health screening (16%), nutrition (34%), and exercise (41%). CONCLUSIONS: Youth attending our transition program had more functional limitations, poorer reported health status, different diagnosis distribution, and higher levels of needed health services. Few parents identified needs for other recommended adolescent preventive services. Transition programs should assess patient health characteristics and service needs to design effective patient-centered services.
Subject(s)
Chronic Disease/therapy , Needs Assessment , Transition to Adult Care , Adolescent , Autistic Disorder/therapy , Cerebral Palsy/therapy , Child , Data Collection , Developmental Disabilities/therapy , Down Syndrome/therapy , Female , Health Status , Humans , Male , Parents/psychology , Spinal Dysraphism/therapy , Young AdultABSTRACT
The provision of essential nutrition-related content in US medical education has been deficient, despite efforts of the federal government and multiple professional organizations. Novel and efficient approaches are needed. A multi-department project was developed to create and pilot a computer-based compact disc instructional program covering the nutrition topics of oral rehydration therapy, calcium, and vitamins. Funded by an internal medical school grant, the content of the modules was written by Department of Pediatrics faculty. The modules were built by School of Informatics faculty and students, and were tested on a convenience sampling of 38 pediatric residents in a randomized controlled trial performed by a registered dietitian/School of Health and Rehabilitation Sciences Master's degree candidate. The modules were reviewed for content by the pediatric faculty principal investigator and the registered dietitian/School of Health and Rehabilitation Sciences graduate student. Residents completed a pretest of nutrition knowledge and attitude toward nutrition and Web-based instruction. Half the group was given three programs (oral rehydration therapy, calcium, and vitamins) on compact disc for study over 6 weeks. Both study and control groups completed a posttest. Pre- and postintervention objective test results in study vs control groups and attitudinal survey results before and after intervention in the study group were compared. The experimental group demonstrated significantly better posttrial objective test performance compared to the control group (P=0.0005). The study group tended toward improvement, whereas the control group performance declined substantially between pre- and posttests. Study group resident attitudes toward computer-based instruction improved. Use of these computer modules prompted almost half of the residents in the study group to independently pursue relevant nutrition-related information. This inexpensive, collaborative, multi-department effort to design a computer-based nutrition curriculum positively impacted both resident knowledge and attitudes.