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1.
Autism Adulthood ; 6(2): 241-246, 2024 Jun.
Article in English | MEDLINE | ID: mdl-39139508

ABSTRACT

Background: Autistic adults are significantly unemployed or underemployed even compared with other disability groups. Employment is a social determinant that, when satisfied, closely influences health-related quality of life. For autistic adults, environmental barriers to transportation can impact the ability to get to employment resulting in limited employment opportunities. This study provides a closer examination of the association between transportation use and employment status. Objective: To examine the use of different types of transportation and barriers to public transit by employed and unemployed autistic adults. Method: The data were from a large statewide study conducted between May 2017 and June 2018 using the Pennsylvania Autism Needs Assessment (PANA), in which information about employment and transportation use was obtained from autistic adults who were residents of Pennsylvania. The study sample included 1120 autistic adults (Mage = 28.03 years, standard deviation = 9.84; 70% men; 82% non-Hispanic White). Results: Participants who were employed were more likely to drive themselves than those who were unemployed (45% vs. 21%, p < 0.001), while they were less likely to take rides from others (62% vs. 75%, p < 0.001) or use service transportation (11% vs. 18%, p = 0.001). For barriers to public transit, the results identified that employed participants reported fewer barriers to public transportation than unemployed participants with a small effect size (1.98 vs. 2.54, d = 0.22). Conclusion: Employed autistic adults exercise more transportation independence. Unemployed autistic adults report more barriers to participation and lower ability to independently use public transportation. Future transportation and employment studies are necessary.


Why is this an important issue? Employment is important for income, quality of life, and the ability to get the supports or services a person needs. Autistic adults are more likely to be unemployed or underemployed when compared with neurotypical adults and people with other disabilities. There are many environmental barriers to participating in adult activities in the community, but issues with transportation are a primary barrier. In previous research, a high number of autistic adults (72%) reported that they had missed some of their desired activities due to lack of transportation. It is important to understand the relationship between transportation and employment to know how to overcome barriers and improve employment options for autistic adults who want to work. What was the purpose of this research? The purpose of this research was to look at transportation and employment status (i.e., employed or unemployed). Specifically, this study compared types of transportation used and perceived barriers to transportation between autistic adults who were employed and those who were unemployed. What did the researchers do? Information was collected from 1120 autistic adults through a large statewide survey, which included questions about employment and transportation. Information from autistic adults who were employed and those who were not employed was compared. What were the results of the study? Results of this comparison showed that participants who were employed were more likely to drive themselves and less likely to take rides from other people or to use service transportation. Those who were employed also reported fewer barriers to public transportation. Barriers such as crime, planning a trip, treatment by fellow passengers, cost, knowledge on how to use public transportation, and sensory overload were identified by more people who were unemployed than by people who were employed. How will these findings help autistic adults now or in the future? The study identified specific barriers to transportation for autistic adults who are unemployed. This information can help to guide supports and policies to reduce barriers for travel needed for employment. In addition, results of this study can help guide future research to develop or identify the transportation skills needed for travel to work for autistic adults.

2.
JAMA Netw Open ; 7(7): e2420579, 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-39008301

ABSTRACT

Importance: Since implementation of the International Statistical Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) in the US, thousands of new or related codes have been added to represent clinical conditions. The widely used pediatric complex chronic condition (CCC) system required a major update from version 2 (V2) to version 3 (V3) to capture the range of clinical conditions represented in the ICD-10-CM. Objective: To update the CCC V3 system, creating V3, with new, missing, or retired codes; to reconceptualize the system's use of technology codes; and to compare CCC V3 with V2. Design, Setting, and Participants: This repeated cross-sectional study examined US hospitalization data from the Pediatric Health Information System (PHIS) and the Medicaid Merative MarketScan Research Databases from January 1, 2009, to December 31, 2019, for all patients aged 0 to 18 years. Data were analyzed from March 1, 2023, to April 1, 2024. Exposures: The CCCs were identified in both data sources using the CCC V2 and V3 systems. Main Outcomes and Measures: The (1) percentage of pediatric hospitalizations associated with a CCC, (2) numbers of CCC body-system categories per patient, and (3) explanatory power for hospital length of stay and in-hospital mortality were compared over time for V3 vs V2. Results: Among 7 186 019 hospitalizations within PHIS, 54.3% patients were male, the median age was 4 years (IQR, 1-11 years), and 51.2% were aged 0 to 4 years). The CCC V2 identified 2 878 476 (40.1%) patients as having any CCC compared with 2 753 412 (38.3%) identified by V3. In addition, V2 identified 100 065 (1.4%) patients with transplant status compared with 146 683 (2.0%) by V3, and V2 identified 914 835 (12.7%) as having technology codes compared with 805 585 (11.2%) by V3. The 2 systems were similar in accounting for the number of CCC body-system categories per patient and in explaining variation in hospital length of stay and in-hospital mortality. For both V2 and V3, 10.0% of the variance in hospital length of stay and 12.0% of the variance in in-hospital mortality was explained by the presence of a CCC. Similar patterns were observed when analyzing the 2 999 420 Medicaid Merative MarketScan Research Databases' hospitalizations (52.3% of patients were male, the median age was 1 year [IQR, 0-12 years], and 62.0% were 0 to 4 years old), except that the percentages of identified CCCs were all lower: V2 identified 758 110 hospitalizations (25.3%) with any CCC compared with 718 100 (23.9%) identified by V3. Conclusions and Relevance: These results suggest that, moving forward, V3 should be used to identify CCCs, and ongoing, frequent updates to V3, using a transparent, structured process, will enable V3 to accurately reflect the evolving spectrum of clinical conditions represented in the ICD-10-CM.


Subject(s)
International Classification of Diseases , Humans , Child , Cross-Sectional Studies , Child, Preschool , Chronic Disease , Male , Adolescent , Female , Infant , United States , Infant, Newborn , Hospitalization/statistics & numerical data , Databases, Factual
3.
Am J Occup Ther ; 78(3)2024 May 01.
Article in English | MEDLINE | ID: mdl-38630651

ABSTRACT

IMPORTANCE: Community participation of autistic adults is important for health and well-being. Many clinical efforts and interventions aim to enhance community participation in this population. OBJECTIVE: To empirically examine the relationship between community participation and community mobility. DESIGN: A randomized controlled trial using data from baseline and 4- to 6-wk follow-up. SETTING: Community organizations serving autistic adults in Philadelphia. PARTICIPANTS: Sixty-three autistic young adults with data on community mobility and participation from a prior study on public transportation use. OUTCOMES AND MEASURES: Participants were tracked with GPS-enabled cell phones over a 2-wk period. A spatiotemporal data mining algorithm was used to compute the total number of destinations, nonhome destinations, unique destinations, percentage of time spent outside the home, and median daily activity space area from the GPS data. The Temple University Community Participation measure was used to collect self-report data in 21 different areas, and total amount, breadth, and sufficiency of participation were calculated. RESULTS: Moderate and statistically significant associations were found between community mobility and participation variables at baseline and follow-up. However, changes in community mobility were not related to changes in community participation. CONCLUSION: Health policymakers and providers should consider community mobility as a factor that can affect community participation in autistic individuals. Plain-Language Summary: Lower levels of community participation among autistic young adults affect health outcomes and overall quality of life. Community mobility is often a barrier to community participation. An understanding of the relationship between community mobility and community participation can lead to occupational therapists tailoring specific interventions and policies that support autistic young adults to engage in important life activities within the community.


Subject(s)
Autistic Disorder , Humans , Young Adult , Self Report , Quality of Life , Activities of Daily Living , Community Participation
4.
Community Ment Health J ; 60(1): 60-71, 2024 01.
Article in English | MEDLINE | ID: mdl-37882892

ABSTRACT

Autistic Individuals with or without co-occurring Mental Health Conditions Experience Challenges with Community Participation that can Affect Quality of life. These Challenges Involve, but are not Limited to, Transportation, Finances, Accessibility, Attitude towards Participation, and Infrastructure Issues. COVID-19 Added a new Layer of Community Participation Barriers for all Individuals, Especially Autistic Individuals. The purpose of this study is to understand the perceived community participation barriers and facilitators encountered by autistic individuals during a public health crisis using the Photovoice methodology. The study will compare these perceptions of autistic individuals with and without co-occurring mental health conditions during a public health crisis to determine if any distinctions can be determined. Photovoice, an established qualitative outreach methodology, was the foundation for the methods. Participants completed a narrative answering the question "what is a barrier or facilitator to your community participation?" Data were analyzed using grounded theory. Seventeen autistic participants with a mean age of 23 completed the Photovoice study. Eleven (65%) reported at least one co- occurring mental health condition. Data analysis resulted in two major themes COVID-19 and Transportation; and six subthemes access, safety, technology, leisure, shared experiences, and sensory. Autistic individuals with and without co-occurring mental health conditions chose to identify barriers more than facilitators. Participants without co-occurring mental health conditions viewed COVID-19 as a facilitator almost twice as often as those without. Participants with co-occurring mental health conditions reported transportation more as a barrier than those without. In this study conducted during COVID-19 regulations, autistic individuals identified COVID-19 and transportation as the primary barriers to community participation. COVID-19 was identified as both a barrier and a facilitator. Autistic individuals identified that COVID-19 enabled more on-line participation. Autistic individuals with co-occurring mental health conditions can experience a greater increase in symptoms when daily routines and participation are affected. Disruption and changes in participation for the autistic community during the COVID-19 pandemic can have future implications on this population's ability to reintroduce themselves into community participation. Identified facilitators; technology, shared experiences, and leisure are useful tools to combat the participation barriers.


Subject(s)
Autism Spectrum Disorder , COVID-19 , Young Adult , Humans , Adult , Autism Spectrum Disorder/complications , Autism Spectrum Disorder/epidemiology , Pandemics , Quality of Life , COVID-19/epidemiology , Community Participation
5.
Pediatrics ; 152(2)2023 Aug 01.
Article in English | MEDLINE | ID: mdl-37431596

ABSTRACT

BACKGROUND AND OBJECTIVES: The American Academy of Pediatrics endorses screening for social determinants of health (SDOH) and providing families resources for unmet needs. A systematic response to unmet needs requires identification, documentation, and provision of resources. Our goal was to compare SDOH International Classification of Diseases, 10th Revision (ICD-10), code use for pediatric inpatients after policy changes in 2018 permitting coding by nonphysicians. METHODS: We conducted a retrospective cohort study comparing data from the 2016 and 2019 Kid's Inpatient Database for patients <21 years old. The primary variable was the presence of an SDOH code, defined as an ICD-10 Z-code (Z55-Z65) or 1 of 13 ICD-10 codes recommended by the American Academy of Pediatrics. We compared overall SDOH code usage between 2016 and 2019, and by Z-code category, demographic, clinical, and hospital characteristics using χ2 tests and odds ratios. Using logistic regression, we examined hospital-level characteristics for hospitals with >5% of discharges with an SDOH code. RESULTS: SDOH code documentation increased from 1.4% in 2016 to 1.9% in 2019 (P < .001), with no notable differences based on Z-code category. In both periods, SDOH code documentation was more common in adolescents, Native Americans, and patients with mental health diagnoses. The number of all hospitals using any SDOH code increased nearly 8% between 2016 and 2019. CONCLUSIONS: ICD-10 codes remain underused to track SDOH needs within the inpatient pediatric setting. Future research should explore whether SDOH code documentation is associated with increased response to unmet social needs and, if so, how to improve use of SDOH codes by all providers.

6.
Pediatrics ; 152(2)2023 08 01.
Article in English | MEDLINE | ID: mdl-37403624

ABSTRACT

BACKGROUND AND OBJECTIVES: Pediatric respiratory illnesses (PRI): asthma, bronchiolitis, pneumonia, croup, and influenza are leading causes of pediatric hospitalizations, and emergency department (ED) visits in the United States. There is a lack of standardized measures to assess the quality of hospital care delivered for these conditions. We aimed to develop a measure set for automated data extraction from administrative data sets and evaluate its performance including updated achievable benchmarks of care (ABC). METHODS: A multidisciplinary subject-matter experts team selected quality measures from multiple sources. The measure set was applied to the Public Health Information System database (Children's Hospital Association, Lenexa, KS) to cohorts of ED visits and hospitalizations from 2017 to 2019. ABC for pertinent measures and performance gaps of mean values from the ABC were estimated. ABC were compared with previous reports. RESULTS: The measure set: PRI report includes a total of 94 quality measures. The study cohort included 984 337 episodes of care, and 82.3% were discharged from the ED. Measures with low performance included bronchodilators (19.7%) and chest x-rays (14.4%) for bronchiolitis in the ED. These indicators were (34.6%) and (29.5%) in the hospitalized cohort. In pneumonia, there was a 57.3% use of narrow spectrum antibiotics. In general, compared with previous reports, there was improvement toward optimal performance for the ABCs. CONCLUSIONS: The PRI report provides performance data including ABC and identifies performance gaps in the quality of care for common respiratory illnesses. Future directions include examining health inequities, and understanding and addressing the effects of the coronavirus disease 2019 pandemic on care quality.


Subject(s)
Bronchiolitis , COVID-19 , Pneumonia , Child , Humans , United States/epidemiology , Benchmarking , Quality of Health Care , Pneumonia/epidemiology , Pneumonia/therapy , Bronchiolitis/epidemiology , Bronchiolitis/therapy , Emergency Service, Hospital
7.
Open Forum Infect Dis ; 10(1): ofac678, 2023 Jan.
Article in English | MEDLINE | ID: mdl-36726547

ABSTRACT

Background: Since the availability of antiretroviral therapy, mortality rates among people with HIV (PWH) have decreased; however, this does not quantify premature deaths among PWH, and disparities persist. Methods: We examined all-cause and premature mortality among PWH receiving care at the Vanderbilt Comprehensive Care Clinic from January 1998 to December 2018. Mortality rates were compared by demographic and clinical factors, and adjusted incidence rate ratios (aIRRs) were calculated using multivariable Poisson regression. For individuals who died, age-adjusted years of potential life lost (aYPLL) per total person-years living with HIV were calculated from US sex-specific life tables, and sex and race differences were examined using multivariable linear regression. Results: Among 6531 individuals (51% non-Hispanic [NH] White race, 40% NH Black race, 21% cis-gender women, 78% cis-gender men) included, 956 (14.6%) died. In adjusted analysis, PWH alive in the most recent calendar era (2014-2018) had decreased risk of mortality compared with those in the earliest calendar era (1998-2003; aIRR, 0.22; 95% CI, 0.17-0.29), and women had increased risk of death compared with men (aIRR, 1.31; 95% CI, 1.12-1.54). Of those who died, Black women had the highest aYPLL (aIRR, 592.5; 95% CI, 588.4-596.6), followed by Black men (aIRR, 470.7; 95% CI, 468.4-472.9), White women (aIRR, 411.5; 95% CI, 405.6-417.4), then White men (aIRR, 308.6; 95% CI, 308.0-309.2). In adjusted models, higher YPLL remained associated with NH Black race and cis-gender women, regardless of HIV risk factor. Conclusions: Despite marked improvement over time, sex disparities in mortality as well as sex and race disparities in YPLL remained among PWH in this cohort.

8.
Front Med (Lausanne) ; 9: 1022026, 2022.
Article in English | MEDLINE | ID: mdl-36438029

ABSTRACT

Background: Primary care is associated with greater access to healthcare services and improved health outcomes. However, autistic adults report challenges accessing and utilizing primary care, in addition to unmet healthcare needs. The need to minimize existing barriers and identify strategies to facilitate successful healthcare encounters is increasingly important as autistic adults represent a growing segment of society. Minimal research has examined primary healthcare encounters for this population. Methods: As part of a larger convergent parallel design mixed-methods study that recruited autistic adults, caregivers of autistic adults, and primary care providers treating autistic adults, interviews were conducted with 31 caregivers of autistic adults. Caregivers were predominantly female (94%), and the autistic adult they cared for were primarily male (87%), with a mean age of 24 years. Thematic analysis was employed to elucidate the barriers to care, suggestions to mitigate challenges, and/or successful strategies implemented during care encounters for autistic adults, as reported by their caregivers. Results: Reported here are the results only from the caregiver interviews, in which seven themes emerged: (1) finding a primary care provider; (2) patient-provider communication; (3) anxiety due to unpredictability, an overstimulating sensory environment, and waiting time; (4) participation of consumers in the healthcare process; (5) stigma and assumptions about autism; (6) caregiver experiences; and (7) the impact of culture and ethnicity on care. Conclusion: Findings from this study have the potential to inform the development of, or improve existing, client-centered interventions to improve primary healthcare services for autistic adults.

10.
J Autism Dev Disord ; 52(4): 1553-1567, 2022 Apr.
Article in English | MEDLINE | ID: mdl-33988774

ABSTRACT

Transportation and mobility for community participation is difficult for persons with Autism Spectrum Disorders (ASD) under normal circumstances, but the impact of COVID-19 made access even more challenging. Researchers used a single-subject design to examine patterns of change from before and after the COVID-19 pandemic in community mobility and participation as measured by GPS and daily participation questionnaires. Participants were young adults with ASD between the ages of 21 and 27 (4 males, 2 females) who were enrolled in a subsequent study. Community mobility and participation decreased for all participants in both essential and non-essential activities. Additionally, the number of trips for participants decreased substantially in the after COVID-19 periods, as did the variability in modes of transit.


Subject(s)
Autism Spectrum Disorder , COVID-19 , Adult , Community Participation , Female , Humans , Male , Pandemics , Transportation , Young Adult
11.
JAMA Netw Open ; 4(12): e2135184, 2021 12 01.
Article in English | MEDLINE | ID: mdl-34967884

ABSTRACT

Importance: The scope of low-value care in children's hospitals is poorly understood. Objective: To develop and apply a calculator of hospital-based pediatric low-value care to estimate prevalence and cost of low-value services. Design, Setting, and Participants: This cross-sectional study developed and applied a calculator of hospital-based pediatric low-value care to estimate the prevalence and cost of low-value services among 1 011 950 encounters reported in 49 US children's hospitals contributing to the Pediatric Health Information System (PHIS) database. To develop the calculator, a multidisciplinary stakeholder group searched existing pediatric low-value care measures and used an iterative process to identify and operationalize relevant hospital-based measures in the PHIS database. Children with an eligible encounter in 2019 were included in the calculator-applied analysis. Two cohorts were analyzed: an emergency department cohort (with encounters resulting in emergency department discharge) and a hospitalized cohort. Exposures: Eligible condition-specific hospital encounters. Main Outcomes and Measures: The proportion and volume of encounters in which low-value services were delivered and their associated standardized costs. Measures were ranked by those outcomes. Results: There were 1 011 950 encounters eligible for 1 or more of 30 calculator-included measures in 2019; encounters were incurred by 816 098 unique patients with a median age of 3 years (IQR, 1-8 years). In the emergency department cohort, low-value services delivered in the greatest percentage of encounters were Group A streptococcal testing among children younger than 3 years with pharyngitis (3679 of 9785 [37.6%]), computed tomography scan for minor head injury (7541 of 42 602 [17.7%]), and bronchodilators for treatment of bronchiolitis (8899 of 55 616 [16.0%]). In the hospitalized cohort, low-value care was most prevalent for broad-spectrum antibiotics in the treatment of community-acquired pneumonia (3406 of 5658 [60.2%]), acid suppression therapy for infants with esophageal reflux (3814 of 7507 of [50.8%]), and blood cultures for uncomplicated community-acquired pneumonia (2277 of 5823 [39.1%]). Measured low-value services generated nearly $17 million in total standardized cost. The costliest services in the emergency department cohort were computed tomography scan for abdominal pain (approximately $1.8 million) and minor head injury (approximately $1.5 million) and chest radiography for asthma (approximately $1.1 million). The costliest services in the hospitalized cohort were receipt of 2 or more concurrent antipsychotics (approximately $2.4 million), and chest radiography for bronchiolitis ($801 680) and asthma ($625 866). Conclusions and Relevance: This cross-sectional analysis found that low-value care for some pediatric services was prevalent and costly. Measuring receipt of low-value services across conditions informs prioritization of deimplementation efforts. Continued use of this calculator may establish trends in low-value care delivery.


Subject(s)
Child, Hospitalized , Health Care Costs , Low-Value Care , Bronchiolitis/epidemiology , Bronchiolitis/therapy , Child , Child, Preschool , Craniocerebral Trauma/epidemiology , Craniocerebral Trauma/therapy , Cross-Sectional Studies , Databases, Factual , Hospitals, Pediatric/statistics & numerical data , Humans , Infant , Male , Pharyngitis/epidemiology , Pharyngitis/therapy , Prevalence , United States/epidemiology
14.
Bioorg Med Chem Lett ; 27(18): 4436-4439, 2017 09 15.
Article in English | MEDLINE | ID: mdl-28807438

ABSTRACT

The l-like enantiomer of 9-(trans-2', trans-3'-dihydroxycyclopent-4'-enyl)-3-deazaadenine (DHCDA) (1), its 3-deaza-3-bromo derivative (3), and the conformational restricted methanocarba (MC) nucleoside analogues (2 and 4) were synthesized. X-ray crystal structures showed the L isomer MC analogue 4 adopts a similar North-like locked conformation as conventional D-MC nucleosides, while the DHCDA analogue 3 preferred south-like conformer. Compounds 1 and 4 showed potent antiviral activity against norovirus, while compound 2 and 3 were less potent or inactive. The conformational behavior of "sugar" puckering (north/south) and nucleobase orientation (syn /anti) may contribute to the antiviral activity differences. For compound 3, antiviral activity was also found against Ebola virus.


Subject(s)
Adenosine/analogs & derivatives , Adenosine/pharmacology , Antiviral Agents/pharmacology , Cyclopentanes/pharmacology , Ebolavirus/drug effects , Adenosine/chemical synthesis , Adenosine/chemistry , Antiviral Agents/chemical synthesis , Antiviral Agents/chemistry , Cyclopentanes/chemical synthesis , Cyclopentanes/chemistry , Dose-Response Relationship, Drug , Microbial Sensitivity Tests , Molecular Conformation , Structure-Activity Relationship
15.
Med Care ; 55(9): 810-816, 2017 09.
Article in English | MEDLINE | ID: mdl-28671930

ABSTRACT

BACKGROUND: Social determinants of health (SDH) data collected in health care settings could have important applications for clinical decision-making, population health strategies, and the design of performance-based incentives and penalties. One source for cataloging SDH data is the International Statistical Classification of Diseases and Related Health Problems (ICD). OBJECTIVE: To explore how SDH are captured with ICD Ninth revision SDH V codes in a national inpatient discharge database. MATERIALS AND METHODS: Data come from the 2013 Healthcare Cost and Utilization Project (HCUP) National Inpatient Sample, a national stratified sample of discharges from 4363 hospitals from 44 US states. We estimate the rate of ICD-9 SDH V code utilization overall and by patient demographics and payer categories. We additionally estimate the rate of SDH V code utilization for: (a) the 5 most common reasons for hospitalization; and (b) the 5 conditions with the highest rates of SDH V code utilization. RESULTS: Fewer than 2% of overall discharges in the National Inpatient Sample were assigned an SDH V code. There were statistically significant differences in the rate of overall SDH V code utilization by age categories, race/ethnicity, sex, and payer (all P<0.001). Nevertheless, SDH V codes were assigned to <7% of discharges in any demographic or payer subgroup. SDH V code utilization was highest for major diagnostic categories related to mental health and alcohol/substance use-related discharges. CONCLUSIONS: SDH V codes are infrequently utilized in inpatient settings for discharges other than those related to mental health and alcohol/substance use. Utilization incentives will likely need to be developed to realize the potential benefits of cataloging SDH information.


Subject(s)
International Classification of Diseases/statistics & numerical data , Needs Assessment/statistics & numerical data , Patient Discharge/statistics & numerical data , Social Determinants of Health/statistics & numerical data , Adolescent , Adult , Age Distribution , Aged , Child , Child, Preschool , Female , Humans , Infant , Infant, Newborn , Male , Mental Health , Middle Aged , Racial Groups , Sex Distribution , Socioeconomic Factors , Substance-Related Disorders/diagnosis , Substance-Related Disorders/epidemiology , United States , Vulnerable Populations , Young Adult
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