La revue Pediatrics propose un supplément à son numéro d’avril 2022.

1. Kuo AA. Promoting Lifespan Health and Well-Being Through the Autism Intervention Research Network. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

2. Kuo AA, Hotez E, Rosenau KA, Gragnani C, Fernandes P, Haley M, Rudolph D, Croen LA, Massolo ML, Graham Holmes L, Shattuck P, Shea L, Wilson R, Martinez-Agosto JA, Brown HM, Dwyer PSR, Gassner DL, Kapp SK, Ne’eman A, Ryan JG, Waisman TC, Williams ZJ, DiBari JN, Foney DM, Ramos LR, Kogan MD. The Autism Intervention Research Network on Physical Health (AIR-P) Charter. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

3. Kuo AA, Hotez E, Rosenau KA, Gragnani C, Fernandes P, Haley M, Rudolph D, Croen LA, Massolo ML, Holmes LG, Shattuck P, Shea L, Wilson R, Martinez-Agosto JA, Brown HM, Dwyer PSR, Gassner DL, Kapp SK, Ne’eman A, Ryan JG, Waisman TC, Williams ZJ, DiBari JN, Foney DM, Ramos LR, Kogan MD. The Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda. Pediatrics;2022 (Apr 1);149(Suppl 4)

OBJECTIVES: In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS: Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS: Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS: The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.

Lien vers le texte intégral (Open Access ou abonnement)

4. Brown HM, Dwyer PSR, Gassner DL, Kapp SK, Ne’eman A, Ryan JG, Waisman TC, Williams ZJ. The Autism Intervention Research Network on Physical Health Autistic Researcher Review Board. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

5. Kuo AA, Torrest A. Meeting the Primary Care Needs of Autistic Individuals. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

6. Gragnani CM, Fernandes P. Promoting Healthy Lifestyles and Well-Being in Autistic Youth. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

7. Shattuck P, Shea L. Improving Care and Service Delivery for Autistic Youths Transitioning to Adulthood. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

8. Graham Holmes L, Ames JL, Massolo ML, Nunez DM, Croen LA. Improving the Sexual and Reproductive Health and Health Care of Autistic People. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

9. Wilson RB. Improving Awareness, Identification, and Treatment of Motor Impairments in Autism. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

10. Shafqat I, Rosenau KA, Martinez-Agosto JA. The Role of Genetic Testing Among Autistic Individuals. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

11. Morgan EH, Rodgers R, Tschida J. Addressing the Intersectionality of Race and Disability to Improve Autism Care. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

12. Dwyer P, Ryan JG, Williams ZJ, Gassner DL. First Do No Harm: Suggestions Regarding Respectful Autism Language. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

13. Fernandes P, Kwak H. Autism and COVID-19. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

14. Rosenau KA, Hotez E. Promoting Interdisciplinary and Participatory Autism Research. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

15. Waisman TC, Alba LA, Green SA. Barriers to Inclusive Learning for Autistic Individuals. Pediatrics;2022 (Apr 1);149(Suppl 4)

Lien vers le texte intégral (Open Access ou abonnement)

16. Rast JE, Roux AM, Fernandes SJ, D’Silva V, Shea LL. Hospital Inpatient Stays for Autistic Youth and Youth With Other Disabilities. Pediatrics;2022 (Apr 1);149(Suppl 4)

BACKGROUND: Addressing health care needs is complex in autistic youth for many reasons. Increased inpatient care that has been noted in this population, particularly for ambulatory care sensitive conditions (ACSCs), may be a marker of inadequate primary and outpatient care. METHODS: This study used data from hospital inpatient discharges from the National Inpatient Sample 2017. The prevalence, average length of stay, and the average cost per day of the 10 most common principal diagnoses for index stay were calculated for autistic youth and youth with mental, behavioral, and other neurodevelopmental disabilities (MBND), ages 0 to 17. RESULTS: Of every 1000 inpatient stays, 7.3 were for autistic youth and 65.2 for youth with MBND. The rate varied by US region and zip code-level household income. The most common diagnosis associated with stays in autistic youth was mood disorders, as in youth with MBND. Nearly all top 10 principal diagnoses for autistic youth were for ACSCs. The highest average cost per day for autistic youth was for physical injuries ($4320 per day), and the longest stays were for schizophrenia (14 days). CONCLUSIONS: High occurrence of ACSCs in autistic youth suggests that primary care may not adequately address health and mental health needs. Clinical complexity and autism characteristics may be impacting care received in the hospital. Additional considerations need to explore and examine care complexity, racial and ethnic disparities, and the large portion of Medicaid-covered youth. Strategies for the provision of care to these vulnerable populations are of great concern.

Lien vers le texte intégral (Open Access ou abonnement)

17. Roux AM, Rast JE, Shea LL. Family Perceptions of Health Care Access for Autistic Young Adults Receiving Disability Services. Pediatrics;2022 (Apr 1);149(Suppl 4)

BACKGROUND: Autistic young adults (YAs) often live with family and present with complex health needs. Adults with developmental disabilities (DDs) who live with family are the least likely to receive preventive health care compared with residents of other settings. No published studies have examined intersectionality between age, race or ethnicity, household income, and health needs in health care access for autistic YA. This study explored health care access among autistic YAs receiving state DD services compared with other age and disability groups. METHODS: We analyzed data from the National Core Indicator’s Adult Family Survey of families of DD service users ages 18 and older who lived in the respondent’s home. We used bivariate analyses and multivariable logistic regression to examine family-reported access to health care providers when needed, the role of sociodemographics, and the complexity of health care needs in predicting consistent care. RESULTS: Approximately 70% of autistic YAs had consistent access to health care when needed, similar to autistic adults but at lower rates than those with other disabilities. Odds of consistent health care access were higher among autistic YAs who were Black or lived in a rural area and lower among those with co-occurring health conditions or who needed extensive personal care support. CONCLUSIONS: Nearly one-third of autistic YAs who lived with family and receive state DD services had difficulty consistently accessing needed health care. Improved surveillance of health care services in this population is needed in addition to innovations in Medicaid waivers, which fund DD services, to address health needs and support families in accessing care.

Lien vers le texte intégral (Open Access ou abonnement)

18. Graham Holmes L, Rast JE, Roux AM, Rothman EF. Reproductive Health and Substance Use Education for Autistic Youth. Pediatrics;2022 (Apr 1);149(Suppl 4)

BACKGROUND: We provide an update on reproductive health education (RHE) and substance use prevention education (SUPE) participation for autistic youth compared with other youth with and without individualized education plans (IEPs) and 504 plans. The 800 000 autistic youth served by the US special education system need education to make informed decisions about reproductive health and substance use. METHODS: Data were from the National Longitudinal Transition Study-2012, a survey designed to yield nationally representative estimates of the experiences of US youth. Autistic youth (n = 390) who received RHE and SUPE were compared with youth with all other IEP classifications (n = 4420), with a 504 plan (n = 350), and with no IEP or 504 plan (n = 980). All youth were ≥14 years old and able to self-report on a survey. Bivariate and multivariate regression analyses were performed for each group to identify characteristics associated with RHE and SUPE receipt. RESULTS: Autistic youth reported a significantly lower rate of RHE (47.4%) and SUPE (49.6%) inclusion versus students with no IEP or 504 plan (59.2% and 57.4%, respectively). Autistic girls were more than twice as likely to report RHE receipt than autistic boys (55.1% vs 45.9%). For autistic youth, no markers for receipt of SUPE were identified. CONCLUSIONS: Autistic youth are underserved when it comes to school-based RHE and SUPE, potentially undermining self-determination and leading to poorer lifespan health trajectories. Research and policy advocacy are needed to ensure that these youth have access to RHE and SUPE.

Lien vers le texte intégral (Open Access ou abonnement)

19. Fernandes P, Timmerman J, Hotez E, Haley M, Reyes A, Ferguson F, Kuo A. A Residency Program Curriculum to Improve Health Care Transitions for Autistic Individuals. Pediatrics;2022 (Apr 1);149(Suppl 4)

OBJECTIVES: Physical and mental health outcomes of autistic individuals deteriorate during transition to adulthood. The study aims to identify opportunities to improve physician knowledge in health-care transitions (HCT) for autistic individuals by understanding perceived versus experienced facilitators and barriers in overall HCT curriculum implementation in graduate medical education. METHODS: Medicine-Pediatrics program directors participated in a Health Care Transition Residency Curriculum Collaborative Improvement Network and used an iterative process to develop and improve HCT curricula. Pre- and postcollaborative semistructured interviews were administered to program directors. The study occurred over 9 months (July 2018-February 2019). Recurring interview themes were analyzed utilizing Dedoose qualitative coding software and presented utilizing percentages and proportions. RESULTS: Most program directors developed curricula in response to a gap in their current transition curricula. All program directors partially or completely met their goals during the collaborative. The most common types of curricular delivery were didactic (65%) and clinical experience-based (53%). Some tested unique delivery platforms, like the electronic medical record system (29%) and online modules (24%). Program directors often involved residents in the curricular development process and overwhelmingly (65%) felt this was a major facilitator. Competing priorities of faculty (71%) and of residents (53%) were the most common barriers. CONCLUSIONS: Gaps in HCT curricula delivery were primarily attributed to suboptimal health care systems where training occurs, though existing clinical experiences and diverse learning modalities were successfully leveraged. Using a quality improvement framework and actively engaging resident trainees in curriculum development were successful strategies programs used in the development of HCT curricula.

Lien vers le texte intégral (Open Access ou abonnement)

20. Schott W, Tao S, Shea L. Emergency Visits for Autistic Children and Children With ADHD. Pediatrics;2022 (Apr 1);149(Suppl 4)

BACKGROUND AND OBJECTIVES: Autistic children and children with attention-deficit/hyperactivity disorder (ADHD) may have more frequent visits to the emergency department (ED). We aim to identify the primary reasons for ED visits among autistic children and children with ADHD, compared to a random sample of visits. METHODS: Using 2008 to 2017 Nationwide Emergency Department Sample data, we assessed the most frequent primary diagnoses for ED visits among children (ages 3-12 and 13-18 years, separately) (1) with an autism diagnosis, (2) with ADHD, and (3) a random sample (1 000 000 visits). We regressed primary reasons for visits on autism or ADHD diagnosis, controlling for individual characteristics, to assess the odds of presenting for these reasons. RESULTS: Although the 10 most frequent diagnoses among the random sample were physical health conditions, autistic children and children with ADHD often presented for psychiatric conditions. Older children with autism and with ADHD more frequently presented for mood disorders (10%-15% of visits; odds ratios [ORs] = 5.2-8.5) and intentional self-harm (ORs = 3.2-5.0). Younger children with ADHD more commonly presented with mood disorders (6.6% of visits; OR = 18.3) and younger autistic children more often presented with attention-deficit, conduct, and disruptive behavior disorders (9.7% of visits; OR = 9.7). CONCLUSIONS: Autistic children and children with ADHD have higher odds of presenting to the ED for psychiatric conditions than a random sample, including for self-harm. Clinicians should treat these populations sensitively, recognize and assess the risk for self-harm, and facilitate continuing psychiatric care.

Lien vers le texte intégral (Open Access ou abonnement)