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Enhancing Diagnostic Follow-Up and Care Coordination for Children with Autism in a Busy Resident Continuity Clinic: Leveraging the Electronic Health Record

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Title: Enhancing Diagnostic Follow-Up and Care Coordination for Children with Autism in a Busy Resident Continuity Clinic: Leveraging the Electronic Health Record
Language: English
Authors: Laleh Bahrami, Cara T. Miller, Holly Miller, Kathryn L. Carlson, Tori E. Foster, Abhinaya Ganesh, David Johnson, Barron L. Patterson, Jeffrey F. Hine
Source: Journal of Autism and Developmental Disorders. 2025 55(3):904-912.
Availability: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Peer Reviewed: Y
Page Count: 9
Publication Date: 2025
Sponsoring Agency: National Center for Advancing Translational Sciences (NCATS) (DHHS/NIH)
Contract Number: UL1TR000445
Document Type: Journal Articles
Reports - Research
Descriptors: Children, Autism Spectrum Disorders, Intervention, Residential Care, Health Services, Clinical Diagnosis
DOI: 10.1007/s10803-024-06253-1
ISSN: 0162-3257
1573-3432
Abstract: Purpose: A high-quality primary care clinic should provide clear action points and important care coordination for a child receiving a new diagnosis of autism spectrum disorder (ASD). Unfortunately, a substantial proportion of caregivers report little-to-no post-diagnosis support from their home clinics and primary care providers often report lack of training and resources in providing these supports. Methods: We implemented an intervention package to investigate the impact on the frequency and quality of follow-up care for children with ASD in a busy, high-volume resident continuity clinic. The package consisted of a care coordination scheduling pathway and a standardized clinical template--embedded in the electronic health record (EHR)--that guided providers through best-practice recommendations and patient resources. Results: As a result of these interventions, 74% of patients had ASD-specific follow-up, a more than threefold increase from baseline with a majority of providers using the EHR-embedded template to guide their visit. Providers also indicated a high degree of usability for the system and that it aided them in following best-practice guidelines for ASD care. Conclusion: Through explicit scheduling pathways and a novel EHR template, we saw a significant increase in ASD-specific follow-up visits and implementation of best practices for ASD care, demonstrating a new process for training and engaging primary care providers in clear action steps for post-diagnostic care without having to rely on tertiary referrals.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1460777
Database: ERIC
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  Value: <anid>AN0183072063;aut01mar.25;2025Feb19.02:51;v2.2.500</anid> <title id="AN0183072063-1">Enhancing Diagnostic Follow-up and Care Coordination for Children with Autism in a Busy Resident Continuity Clinic: Leveraging the Electronic Health Record </title> <p>Purpose: A high-quality primary care clinic should provide clear action points and important care coordination for a child receiving a new diagnosis of autism spectrum disorder (ASD). Unfortunately, a substantial proportion of caregivers report little-to-no post-diagnosis support from their home clinics and primary care providers often report lack of training and resources in providing these supports. Methods: We implemented an intervention package to investigate the impact on the frequency and quality of follow-up care for children with ASD in a busy, high-volume resident continuity clinic. The package consisted of a care coordination scheduling pathway and a standardized clinical template—embedded in the electronic health record (EHR)—that guided providers through best-practice recommendations and patient resources. Results: As a result of these interventions, 74% of patients had ASD-specific follow-up, a more than threefold increase from baseline with a majority of providers using the EHR-embedded template to guide their visit. Providers also indicated a high degree of usability for the system and that it aided them in following best-practice guidelines for ASD care. Conclusion: Through explicit scheduling pathways and a novel EHR template, we saw a significant increase in ASD-specific follow-up visits and implementation of best practices for ASD care, demonstrating a new process for training and engaging primary care providers in clear action steps for post-diagnostic care without having to rely on tertiary referrals.</p> <p>Keywords: Autism spectrum disorder; Resident continuity clinic; Care coordination; Electronic health record; Medical and Health Sciences Public Health and Health Services</p> <p>Copyright comment Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.</p> <p>Prevalence of autism spectrum disorder (ASD) continues to rise (Maenner et al., [<reflink idref="bib22" id="ref1">22</reflink>]) and pediatric primary care providers (PCPs) are most families' first point of contact for discussions about ASD and recommendations for important next steps. The Council on Children with Disabilities of the American Academy of Pediatrics (AAP) outlines best practices for primary care management of children with ASD that include early identification and management of co-occurring medical and behavioral conditions (AAP, [<reflink idref="bib3" id="ref2">3</reflink>]; Hyman et al., [<reflink idref="bib20" id="ref3">20</reflink>]). Unfortunately, parents and caregivers of children with ASD often report inadequate guidance regarding therapeutic options and community supports, as well as poor access to high-quality primary care that helps them coordinate the comprehensive services that are often required. (Carbone et al., [<reflink idref="bib9" id="ref4">9</reflink>]; Golnik et al., [<reflink idref="bib15" id="ref5">15</reflink>]). This can lead to limited confidence in PCPs' ability to provide quality care during the post-diagnosis window when families are trying to establish services and supports for their children and access relevant and accurate resources to help with long-term management of developmental, behavioral, and health challenges (Carbone et al., [<reflink idref="bib8" id="ref6">8</reflink>]; Cheak-Zamora & Farmer, [<reflink idref="bib11" id="ref7">11</reflink>]; Mazurek et al., [<reflink idref="bib24" id="ref8">24</reflink>]).</p> <p>Parents describe a prolonged and fragmented experience from first concern to accessing services, with a substantial proportion of parents reporting little-to-no post-diagnosis support from their primary care providers (Crane et al., [<reflink idref="bib13" id="ref9">13</reflink>]). High-quality primary care support and coordination is essential for patients with ASD, given high rate of comorbidities and the wide array of services, community partners, therapists, and healthcare team members needed to care for this population (AAP, [<reflink idref="bib4" id="ref10">4</reflink>]; Hyman et al., [<reflink idref="bib20" id="ref11">20</reflink>]). To sustain inclusive, compassionate, and comprehensive primary care clinics and address gaps in equitable care and unmet healthcare needs, we must train and better prepare the primary care workforce to care for patients with ASD (Turchi et al., [<reflink idref="bib31" id="ref12">31</reflink>]).</p> <p>Although PCPs are on the frontlines of developmental care, they report feeling ill-prepared to meet the needs of their patients with ASD, with most reporting low-quality training related to general developmental-behavioral pediatrics (DBP) (Major et al., [<reflink idref="bib23" id="ref13">23</reflink>]; McCormack et al., [<reflink idref="bib25" id="ref14">25</reflink>]; Myers, [<reflink idref="bib26" id="ref15">26</reflink>]; Patel & O'Hare, [<reflink idref="bib27" id="ref16">27</reflink>]). Established providers also face a number of resource-related barriers to receiving further training (Mazurek et al., [<reflink idref="bib24" id="ref17">24</reflink>]). This training and service gap often leaves PCPs attempting to care for children with ASD without sufficient support or knowledge. This further exacerbates care disparities for children with ASD, particularly those from underserved communities with limited options for providers (Constantino et al., [<reflink idref="bib12" id="ref18">12</reflink>]; Durkin et al., [<reflink idref="bib14" id="ref19">14</reflink>]; Smith et al., [<reflink idref="bib29" id="ref20">29</reflink>]).</p> <p>A 2017 survey of pediatric residents at our institution revealed limited knowledge and comfort related to ASD care, with a significant proportion of our graduating residents reporting no-to-low confidence in their ability to manage care for patients with ASD (Hine et al., [<reflink idref="bib18" id="ref21">18</reflink>], [<reflink idref="bib19" id="ref22">19</reflink>]). All reported using "screen-and-refer" strategies and sending patients to our DBP tertiary care center with an average wait time of over 10 months. Most (68%) reported limited confidence in providing primary care to children with ASD, despite nearly all (92%) rating ASD-related training as important to their skills for future practice.</p> <p>Pediatric residents attain training in primary care through their own patient panels in continuity clinics. These clinics are most often designed to prioritize longitudinal relationships for continuous management of patients and chronic health needs (Accreditation Council for Graduate Medical Education, [<reflink idref="bib2" id="ref23">2</reflink>]). Improving practice standards within a resident continuity clinic has important implications for both immediate and long-term outcomes. Approximately 1 in 5 children living in poverty in the United States receives care in a resident continuity clinic (Krugman et al., [<reflink idref="bib21" id="ref24">21</reflink>]). Within our own resident continuity clinic, most of our patient population has public insurance (> 83%) and identifies as part of a racial/ethnic minority group (75%). Deploying novel programs to promote provider competence and ASD-related practice ownership for residents and attending faculty could (<reflink idref="bib1" id="ref25">1</reflink>) immediately enhance care for families disproportionately affected by service delays and (<reflink idref="bib2" id="ref26">2</reflink>) create a future workforce more capable of implementing best practices in community systems of care.</p> <p>Improving knowledge-to-practice transfer and implementation of best practices within busy resident clinics can be challenging. Fortunately, integration of clinical decision-making strategies into electronic health records (EHR) has shown promise for streamlining processes and increasing accuracy in documentation, which can lead to more efficient and coordinated care (Silow-Carroll et al., [<reflink idref="bib28" id="ref27">28</reflink>]). For example, integrating screening schedules and decision-making tools related to ASD within EHRs not only improves practice behaviors but also allows for extraction of practice-change data and implementation monitoring (Brooks et al., [<reflink idref="bib6" id="ref28">6</reflink>]; Campbell et al., [<reflink idref="bib7" id="ref29">7</reflink>]; Carbone et al., [<reflink idref="bib10" id="ref30">10</reflink>]; Wallis et al., [<reflink idref="bib32" id="ref31">32</reflink>]). Embedding practical resources and clinical care checklists into the EHR can also promote best practices for ASD care within primary care, such as implementation of transition-age planning sequences for families of adolescents/young adults with ASD (Harris et al., [<reflink idref="bib16" id="ref32">16</reflink>]). When utilized in a resident continuity clinic, these templates could be designed to both teach and measure clinical behaviors, while hopefully reducing the burden of documentation and increasing efficient access to follow-up care.</p> <p>The primary objective of this study was to investigate whether introducing a uniform follow-up pathway and standardized clinical template can impact the quality of follow-up care for recently diagnosed young children with ASD within a busy, high-volume resident continuity clinic. This was evaluated by implementing an intervention package that included a care coordination scheduling pathway and training on a novel, EHR-embedded, clinical template that guided PCP decision-making and referrals during the post-diagnostic window.</p> <hd id="AN0183072063-2">Methods</hd> <p></p> <hd id="AN0183072063-3">Setting</hd> <p>This study took place in a pediatric primary care clinic within a large academic medical center in the Southeastern United States. In fiscal year 2022, this clinic had 47,020 visits and serves a patient pediatric population that is ethnically- and linguistically-diverse: 42% who identify as Black or African American, 30% Hispanic or Latino, 28% Caucasian, 10% Asian, 15% as more than one race, and 0.3% American Indian or Alaska Native. Primary languages spoken by the clinic's patients and caregivers include English (63%), Spanish (22%), and Arabic (7%). The clinic also serves a majority Medicaid population (> 83%).</p> <hd id="AN0183072063-4">Participants</hd> <p>The study population consisted of the clinic's licensed providers, residents, and their patients. The clinic serves as the pediatric resident continuity clinic, which houses over 100 residents, 17 pediatric attending faculty, and 8 nurse practitioners, all of whom are referred to as PCPs for the purposes of this manuscript. All PCPs within the clinic were expected to participate as part of a clinic-wide quality improvement and educational project. Residents came from four training programs: Categorical Pediatrics, Internal Medicine-Pediatrics combined residency, Pediatrics-Genetics combined residency, and Child Neurology. Depending on the program, each resident begins with a panel of approximately 80–110 continuity clinic patients that grows to 150–175 over their training years. Attending faculty and other clinical staff also participated in the project, either with their own patients or while precepting resident PCPs. The target patient population for this project included children < 48 months of age who were referred for ASD-specific evaluation and received an ASD diagnosis between June 2020 and May 2021 (baseline <emph>n</emph> = 71) and June 2021 and May 2022 (intervention <emph>n</emph> = 111).</p> <hd id="AN0183072063-5">Referral Pathways</hd> <p></p> <hd id="AN0183072063-6">Diagnostic Evaluation</hd> <p>The current intervention expanded upon previous models involving embedded diagnosticians (psychologists) who were able to receive referrals for ASD assessment directly from the clinic's PCPs (see Hine et al., [<reflink idref="bib17" id="ref33">17</reflink>], for description and outcomes of diagnostic services embedded within primary care settings). The referenced pilot study showed decreased latency to diagnosis (average 45 days) and age of diagnosis (median 29 months) by having expert-led diagnostic assessment embedded within the primary care clinic. In the two years after this pilot, our team was able to train another psychologist (Foster) and two "in-house" PCPs (Bahrami and Miller) to provide embedded assessment to further support streamlined diagnosis. During the current project, PCPs referred children < 48 months to these embedded providers following failed standard screening at a well-child visit, or if the PCP determined there might be an elevated likelihood of ASD based on history and/or observation. In addition, PCPs placed referrals to Part C early intervention (for children < 36 months) or the school system, as well as to audiology and speech therapy. Finally, an educational handout for families was created to be given at the time of referral, providing an overview of what to expect between referral and evaluation. This handout was also embedded within the EHR to be used within discharge summaries.</p> <hd id="AN0183072063-7">PCP Care Coordination Pathway</hd> <p>Prior to the current study, diagnosticians typically recommended that patient families follow up with their PCPs, but there were no formal protocols for scheduling and structuring these appointments. The status quo entailed EHR-based notification of evaluation results by the diagnostician to the referring provider. It was also recommended that follow-up take place, but the burden for scheduling was placed on the PCP or caregiver. To improve this process, our workgroup (author team consisting of psychologists, pediatricians, and a nurse practitioner) interviewed various faculty (physicians and nurse practitioners), pediatric residents, clinic leadership, administrative staff, and scheduling leads. Residency and clinic leadership provided feedback that the clinic lacked formal protocols for follow-up with patients with ASD diagnoses and that this process needed to be improved. Members of this workgroup met every 3–4 weeks during the project period, from June 2021 through May 2022. We developed an intervention package consisting of a scheduling pathway to facilitate post-diagnosis appointments with patients' PCPs and training on a novel standardized clinical template to guide post-diagnosis care and documentation (see Fig. 1).</p> <p>Graph: Fig. 1 Outline of pathway from first concern to follow-up and feedback. (Figure created through Microsoft Powerpoint)</p> <p>Both the scheduling pathway and the clinical template were embedded in the EHR. For scheduling, the diagnostician was able to select a follow-up scheduling order (e.g., "schedule 40-min follow-up with PCP") immediately after completing an evaluation for a child receiving an ASD diagnosis. The order was then sent to an automated queue to be scheduled by a scheduling coordinator who was able to schedule a follow-up visit at PCP's first availability. In some cases, the diagnostician was able to escort the family to the front desk for scheduling immediately after the diagnostic appointment. If the referring PCP was no longer working in the clinic (e.g., graduated), the child was scheduled with their newly assigned PCP. The visit was offered virtually or in-person. Once scheduled, the scheduler was able to add a note in the appointment listing reminding the PCP to use a designated ASD follow-up template.</p> <hd id="AN0183072063-8">EHR Template with Embedded Provider Guidance</hd> <p>To create the EHR clinical note template, our workgroup reviewed AAP best practice guidelines for management of ASD within pediatric primary care settings (Hyman et al., [<reflink idref="bib20" id="ref34">20</reflink>]), as well as targets for improvement in care informed by baseline interviews. The template prompted users to inquire about general caregiver concerns and common difficulties associated with ASD, including challenges related to sleep, feeding, toileting, behavior, and other areas of developmental concern. Users were guided to review current interventions, including use of medications and connection to early intervention/school-based services. The template also included a standard physical exam (with prompting to evaluate for stigmata of neurologic or genetic conditions), followed by an assessment and plan with embedded tips/scripts for the provider to discuss genetic testing and other medical follow-up with families. This included reminders for recommended ancillary testing and care (e.g., audiology, vision, hemoglobin/lead, and/or pediatric dentistry).</p> <p>Embedded within the template, a documentation support tool prompted providers to consider follow-up specifics mentioned above, but also allowed providers to access direct links to novel "resource phrases" addressing common concerns. These resource phrases were caregiver-focused and designed to be printed as handouts through the discharge summary or sent electronically through the patient's health portal. Each was available in English, Spanish, and Arabic. They were intended to provide practical after-visit best-practice recommendations and resources related to topic areas including first steps after diagnosis (including family/community and intervention/school supports), recommended medical and genetic testing, behavior management, feeding, sleep, toileting, and use of visual supports.</p> <hd id="AN0183072063-9">Project Training</hd> <p>Our team provided periodic training for PCPs related to pathways and EHR supports, including brief "clinical corners" outlining the background for the project and how to save the template to be readily accessible during visits. Presentations were given four times during the project period to residents, advanced practice, and attending providers (some of which took place before implementation). Project tip sheets and descriptions of the diagnostic referral pathway and patient education resource phrases were also included in the yearly resident clinic guidebook and posted in the clinic workrooms. "At-the-elbow" support was also provided as needed if workgroup members (i.e., authors) were available in person.</p> <hd id="AN0183072063-10">Measures</hd> <p></p> <hd id="AN0183072063-11">Chart Review</hd> <p>Data for outcome measures were collected monthly through chart review. Target variables included: (<reflink idref="bib1" id="ref35">1</reflink>) Latency between diagnosis and follow-up, (<reflink idref="bib2" id="ref36">2</reflink>) completion of ASD-specific follow-up with PCP or another provider, and (<reflink idref="bib3" id="ref37">3</reflink>) provider use of the EHR template. We measured the impact of provider education and supports on meaningful clinical behavioral changes by noting whether providers discussed and/or obtained genetic testing. We chose to track this as the AAP recommends that genetic testing should be discussed or offered to all families as part of the workup for ASD etiology (Hyman et al., [<reflink idref="bib20" id="ref38">20</reflink>]). Baseline EHR data was extracted for the 12 months prior to intervention. Authors reviewed the charts of patients diagnosed with ASD during that time period, utilizing key words to determine whether ASD-specific topics were discussed and/or recommendations were reviewed.</p> <hd id="AN0183072063-12">Provider Surveys</hd> <p>Surveys were emailed to any provider (resident physician, attending physician, nurse practitioner) who both completed an ASD-specific follow-up visit and used the EHR template. Providers were sent an email reminder within 2 weeks after the visit to encourage completion of the survey. Additionally, a link to the survey was embedded in the EHR template itself to facilitate access at the time of the visit. Surveys assessed satisfaction and template usability using a Likert-style rating scale with 5 response options ranging from Strongly Agree (<reflink idref="bib5" id="ref39">5</reflink>) to Strongly Disagree (<reflink idref="bib1" id="ref40">1</reflink>) (adapted from Bangor et al., [<reflink idref="bib5" id="ref41">5</reflink>]).</p> <hd id="AN0183072063-13">Analyses of Primary Outcomes</hd> <p>Comparisons of baseline and intervention phases were conducted using χ<sups>2</sups>. We compared the proportion of children with ASD who received ASD-specific follow up with their PCP, latency between diagnosis and follow up, and the proportion of caregivers of children with autism who received genetic testing recommendations. Descriptive statistics were reviewed for all other variables.</p> <hd id="AN0183072063-14">Ethical Considerations</hd> <p>All activities and methodology were approved by the Institutional Review Board and the Human Research Ethics committee of our university medical center.</p> <hd id="AN0183072063-15">Results</hd> <p></p> <hd id="AN0183072063-16">Baseline</hd> <p>Only 21% (<emph>n</emph> = 15) of the 71 patients newly diagnosed with ASD had ASD-specific follow-up in the year prior to project implementation (see Table 1 for overview of primary outcomes). Of those that were seen for ASD-specific follow-up during baseline, the median latency between diagnosis and follow-up was 53 days and only 27% of those patients (<emph>n</emph> = 4) received counseling regarding genetic testing.</p> <p>Table 1 Results showing improvements in ASD-specific follow up visits</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left" /><th align="left"><p>Baseline</p></th><th align="left"><p>Intervention</p></th></tr></thead><tbody><tr><td align="left"><p>Children (< 48 mo) diagnosed with ASD</p></td><td align="left"><p>71</p></td><td align="left"><p>111</p></td></tr><tr><td align="left"><p>Children with ASD diagnosis that received ASD-specific follow-up</p></td><td align="left"><p>21% (<italic>n</italic> = 15)</p></td><td align="left"><p>74% (<italic>n</italic> = 82)*</p></td></tr><tr><td align="left"><p>Of the children receiving ASD-specific follow-up:</p></td><td align="left" /><td align="left" /></tr><tr><td align="left"><p>Median days to follow-up</p></td><td align="left"><p>53.0 days</p></td><td align="left"><p>47.5 days*</p></td></tr><tr><td align="left"><p>Caregivers who received genetic testing recommendations</p></td><td align="left"><p>27% (<italic>n</italic> = 4)</p></td><td align="left"><p>79% (<italic>n</italic> = 65)*</p></td></tr></tbody></table> </ephtml> </p> <p>* Signifies statistically significant improvement from baseline (<emph>p</emph> <.001)</p> <hd id="AN0183072063-17">Intervention</hd> <p></p> <hd id="AN0183072063-18">Primary Outcomes</hd> <p>In the 12 months following project launch, 111 children received new diagnoses of ASD (see Table 1). 74% (<emph>n</emph> = 82) of these patients had ASD-specific follow-up, a significant improvement from baseline, (<emph>p</emph> <.001), with a median latency from diagnosis to follow-up of 47.5 days (<emph>p</emph> <.001).</p> <hd id="AN0183072063-19">Secondary Outcomes</hd> <p>Fifty-seven percent (<emph>n</emph> = 63) of children had ASD-specific follow-up within 100 days of diagnosis. Most visits were scheduled with patients' PCPs and the majority of PCPs used the EHR-embedded template (83% and 86%, respectively). Following diagnosis, two families switched clinics and thus were not pursued for follow-up. Only one family declined follow-up. Across baseline <emph>and</emph> intervention phases, median wait time between referral and <emph>diagnosis</emph> continued to be very short (29 days) due to prior quality improvement initiatives (Hine et al., [<reflink idref="bib17" id="ref42">17</reflink>]) and increased capacity of embedded diagnosticians.</p> <hd id="AN0183072063-20">Discussion of Genetic Testing</hd> <p>Seventy-nine percent (<emph>n</emph> = 65) of patients diagnosed during the project period who had an ASD-specific follow-up visit received counseling regarding genetic testing, a significant improvement from baseline (<emph>p</emph> <.001). Families consented to microarray testing at 54% (<emph>n</emph> = 45) of follow-up visits. Samples were obtained at 36 visits, with a rate of abnormal findings of 19% (<emph>n</emph> = 7). The follow-up visit took place by telemedicine for 5 out of the 6 visits where testing was consented to but not obtained. Genetic testing was discussed 89% of the time when the EHR template was used; however, genetics was not discussed at any of the visits when the template was not used.</p> <hd id="AN0183072063-21">PCP Satisfaction and Useability Surveys</hd> <p>Twenty-eight electronic surveys were completed by providers after an ASD follow-up visit (response rate 61%; see Table 2). Responses were favorable across queries, with most providers either agreeing or strongly agreeing that the use of the EHR template: allowed for better management of referrals, orders, and visit documentation (100%); helped prioritize family concerns (97%); helped coordinate a management plan (96%); better engaged families in the post-diagnostic process (93%); and helped them better follow best-practice guidelines for general ASD care (96%). Survey responses also indicated high ratings of usability (Table 3), with most respondents marking "agree" or "strongly agree" that the template was easy to use (93%) and they would like to use it frequently (100%).</p> <p>Table 2 Provider electronic survey results related to ASD-specific follow-up visits</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left"><p>Use of the follow-up template and associated parent resources helped me...</p></th><th align="left"><p>Strongly Agree</p></th><th align="left"><p>Agree</p></th><th align="left"><p>Neutral</p></th><th align="left"><p>Disagree</p></th><th align="left"><p>Strongly Disagree</p></th></tr></thead><tbody><tr><td align="left"><p>Better manage referrals, orders, and visit documentation</p></td><td align="left"><p>68%</p></td><td align="left"><p>32%</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td></tr><tr><td align="left"><p>Prioritize and address family concerns</p></td><td align="left"><p>54%</p></td><td align="left"><p>43%</p></td><td align="left"><p>3%</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td></tr><tr><td align="left"><p>Create and coordinate a management plan</p></td><td align="left"><p>64%</p></td><td align="left"><p>32%</p></td><td align="left"><p>4%</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td></tr><tr><td align="left"><p>Better engage my patient and his/her family in the post-diagnostic process (e.g., understanding ASD, engaging with services/therapies, accessing resources)</p></td><td align="left"><p>57%</p></td><td align="left"><p>36%</p></td><td align="left"><p>7%</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td></tr><tr><td align="left"><p>Better follow best-practice guidelines for general ASD care</p></td><td align="left"><p>64%</p></td><td align="left"><p>32%</p></td><td align="left"><p>4%</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td></tr><tr><td align="left"><p>Better follow best-practice guidelines for discussing/ordering genetic testing</p></td><td align="left"><p>75%</p></td><td align="left"><p>14%</p></td><td align="left"><p>7%</p></td><td align="left"><p>4%</p></td><td align="left"><p>--</p></td></tr><tr><td align="left"><p>Improve my skills for providing primary care to children and their families</p></td><td align="left"><p>64%</p></td><td align="left"><p>36%</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td></tr></tbody></table> </ephtml> </p> <p>Table 3 Provider electronic survey results related to usability of clinical note template</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left" /><th align="left"><p>Strongly Agree</p></th><th align="left"><p>Agree</p></th><th align="left"><p>Neutral</p></th><th align="left"><p>Disagree</p></th><th align="left"><p>Strongly Disagree</p></th></tr></thead><tbody><tr><td align="left"><p>I think that I would like to use this system frequently.</p></td><td align="left"><p>54%</p></td><td align="left"><p>46%</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td></tr><tr><td align="left"><p>I found the system unnecessarily complex.</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td><td align="left"><p>11%</p></td><td align="left"><p>64%</p></td><td align="left"><p>25%</p></td></tr><tr><td align="left"><p>I thought the system was easy to use.</p></td><td align="left"><p>36%</p></td><td align="left"><p>57%</p></td><td align="left"><p>7%</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td></tr><tr><td align="left"><p>I think that I would need the support of a technical person to be able to use this system.</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td><td align="left"><p>61%</p></td><td align="left"><p>39%</p></td></tr><tr><td align="left"><p>I found the various functions in this system were well integrated.</p></td><td align="left"><p>32%</p></td><td align="left"><p>61%</p></td><td align="left"><p>7%</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td></tr><tr><td align="left"><p>I thought there was too much inconsistency in this system.</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td><td align="left"><p>57%</p></td><td align="left"><p>43%</p></td></tr><tr><td align="left"><p>I would imagine that most people would learn to use this system very quickly.</p></td><td align="left"><p>43%</p></td><td align="left"><p>54%</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td><td align="left"><p>3%</p></td></tr><tr><td align="left"><p>I found the system very cumbersome to use.</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td><td align="left"><p>61%</p></td><td align="left"><p>39%</p></td></tr><tr><td align="left"><p>I felt very confident using the system.</p></td><td align="left"><p>29%</p></td><td align="left"><p>61%</p></td><td align="left"><p>10%</p></td><td align="left"><p>--</p></td><td align="left"><p>--</p></td></tr><tr><td align="left"><p>I needed to learn a lot of things before I could get going with this system.</p></td><td align="left"><p>--</p></td><td align="left"><p>7%</p></td><td align="left"><p>18%</p></td><td align="left"><p>46%</p></td><td align="left"><p>29%</p></td></tr></tbody></table> </ephtml> </p> <hd id="AN0183072063-22">Discussion</hd> <p>Through the creation of a specific scheduling pathway and the design of a clinical decision-making EHR template, this project resulted in a significant increase in ASD-specific follow-up visits for children under 48 months recently diagnosed with ASD, as well as increased implementation of best practices for follow-up ASD care. Aligning with past research (Campbell et al., 2010; Harris et al., [<reflink idref="bib16" id="ref43">16</reflink>]); these results suggest that we can leverage the EHR to increase adherence to best-practice recommendations and hopefully improve outcomes for families of children with ASD by engaging their PCPs in clear action steps for post-diagnostic care without relying on external/tertiary referrals.</p> <p>Follow-up visits for children with a recent diagnosis of ASD increased more than threefold (21–74%) during the project period. This outcome is significant in several ways. First, with increased access to providers trained to engage in action steps related to ASD follow-up, families have more opportunities to engage with internal and community systems of support. Extending recommendations from previous research (e.g., Carbone et al., [<reflink idref="bib10" id="ref44">10</reflink>]), ASD-specific follow-up visits bolster PCP-family communication related to important next steps after a diagnosis. For example, PCPs were prompted to discuss important referrals and address any barriers to families following up with these referrals. PCPs were also prompted to discuss genetic testing and order it as needed, with outcomes showing a substantial increase in discussion and findings that would likely not have occurred without this intervention.</p> <p>With additional best-practice recommendations embedded within the clinical note template (used in 89% of follow-up visits), this project resulted in increased opportunities for families <emph>and</emph> PCPs to learn about and discuss important next steps. While the initial objective of this project was to increase the quality of care for families, it is important to note the educational impact of this intervention among providers who will enter the independent workforce within the next few years. With significant DBP shortages and a lack of access to them, there have been many recent calls for the field to better prepare the primary care workforce by providing increased training in ASD to providers (Society for Developmental & Behavioral Pediatrics Taskforce on Workforce, [<reflink idref="bib10" id="ref45">10</reflink>]). Although our clinic benefits from embedded DBP providers, their impact is significantly increased if these providers also act as consultants and teachers to increase comfort and competence with ASD identification and follow-up by PCPs.</p> <p>Most users found our intervention package helpful in managing orders and referrals, coordinating care, and following best-practice guidelines. This positive reception is especially notable in the context of a busy clinic with competing priorities. In accordance with existing research on better coordinated and streamlined care using the EHR (e.g., Harris et al., [<reflink idref="bib16" id="ref46">16</reflink>]; Silow-Carroll et al., [<reflink idref="bib28" id="ref47">28</reflink>]) embedding decision-making tools within the EHR likely decreases time burdens on pre-visit, non-billable preparation as well as often complex documentation related to ASD care. Our EHR template provided general tips for action steps, as well as direct scripts for unfamiliar providers to read to families. While providers were encouraged to review the template and training materials before follow-up visits, this was likely not necessary for more straightforward recommendations (e.g., referrals for intervention services, descriptions of community supports and caregiver resources). For more nuanced discussions (e.g., sleep, toileting, or behavioral challenges) providers could access caregiver handouts that reviewed where caregivers could go for help as well as initial "first steps" in addressing concerns. Although much work remains to determine the correct balance of ASD-specific information that is appropriate for PCPs to manage without specialty consultation, this project demonstrated that leveraging the EHR allows for less burdensome and more impactful primary care "check-ins."</p> <p>While these findings are promising, there are several potential limitations to the current work. This is a single-site pilot program, and it is unknown how well results would replicate in other settings. Our clinic is quite large, containing many providers and residents who see a high volume of diverse patients. Given the similarity of our clinic to other resident continuity clinics that are part of large academic medical centers, replication of results in similar settings is promising. Clinics with more flexibility in provider time and scheduling might also be successful in replicating results; however, further research is needed to determine impact of this program on clinics more negatively impacted by primary care workforce shortages or barriers related to geography and under-resourced communities. Most of the PCP participants were residents who were relatively inexperienced with autism. This may suggest that providers who have more experience—with either primary care or guiding caregivers through developmental concerns—might be better equipped to enact a similar follow-up program.</p> <p>Another limitation includes overall scheduling barriers. Resident schedules were historically inflexible with regard to making appointments outside of standard PCP care. Support from clinic leadership and administrative staff was essential in ensuring that PCPs would be able to schedule a longer appointment (e.g., 40 min) within their already busy schedules. Even with leadership support, many families were seen for a well-child visit before, or instead of, their ASD-specific follow-up. Given that scheduling coordinator feedback was not included in the assessment of our outcomes, we plan to more actively seek their feedback and input in future iterations of our program. The clinic has since implemented a change that includes scheduling patients for a PCP follow-up visit <emph>immediately</emph> after their diagnostic visit before leaving the clinic. Overall, the majority of children still received follow-up care within 100 days of diagnosis. While this might not be considered "rapid" follow-up care, it can still be viewed as an impactful improvement for a clinic that previously did not have many clinicians providing any ASD-specific follow-up care and most often relied on tertiary clinics for follow-up care with waitlists in excess of a year. Replication is needed to determine how best to streamline scheduling; whether offering telemedicine visits increases chances of completing appointments; and what organizational, technological, and learner variables contribute most to feasibility and sustainability of improvements.</p> <p>Lastly, this study was not able to include feedback from caregivers related to the impact of the follow-up visits. While this study included a specific measure of practice change for providers (e.g., discussion of genetic testing) which led to an improved outcome for families (increases in tests ordered and findings delivered), we were not able to track and examine families' access to other important interventions. While it can be assumed that increased targeted discussions surrounding referrals for follow-up supports should increase family engagement with these supports, this was not directly measured. Future study of this program will include surveys assessing family perceptions of primary care related to ASD management, whether the process meets family needs and answers their questions, whether the model supports their understanding of their child's diagnosis and the resources available to them, and specific time points of engagement with recommended services. We will also evaluate social determinants of health and their correlation with time to follow-up and engagement with services. Additionally, including families and autistic self-advocates on our planning committee will be an additional area for expansion of this project, including how to best survey and solicit family/patient feedback in response to these programs. Given research on the importance of high-quality and comprehensive primary care for children with ASD and their families, as well as the impact of embedded developmental and behavioral health services within primary care, we are hopeful that this program mirrors improvements in patient and provider outcomes related to increased access to quality care, shared decision-making, care coordination, and more successful health outcomes.</p> <hd id="AN0183072063-23">Author Contributions</hd> <p>All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Laleh Bahrami, Cara Miller, Holly Miller, Tori Foster, Abhinaya Ganesh, and Jeffrey Hine. The first draft of the manuscript was written by Laleh Bahrami and Jeffrey Hine and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.</p> <hd id="AN0183072063-24">Funding</hd> <p>This initiative was funded in part through a faculty award from the Katherine Dodd Faculty Scholars program (Bahrami). This project also received support from UL1 TR000445 (from NCATS/NIH).</p> <hd id="AN0183072063-25">Declarations</hd> <p></p> <hd id="AN0183072063-26">Competing Interests</hd> <p>The authors declared no potential conflicts of interest with respect to research, authorship, and/or publication of this article.</p> <hd id="AN0183072063-27">Publisher's Note</hd> <p>Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.</p> <ref id="AN0183072063-28"> <title> References </title> <blist> <bibl id="bib1" idref="ref25" type="bt">1</bibl> <bibtext> [Redacted for peer review].</bibtext> </blist> <blist> <bibl id="bib2" idref="ref23" type="bt">2</bibl> <bibtext> Accreditation Council for Graduate Medical Education (2023). 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  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Intervention%22">Intervention</searchLink><br /><searchLink fieldCode="DE" term="%22Residential+Care%22">Residential Care</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Services%22">Health Services</searchLink><br /><searchLink fieldCode="DE" term="%22Clinical+Diagnosis%22">Clinical Diagnosis</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1007/s10803-024-06253-1
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 0162-3257<br />1573-3432
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Purpose: A high-quality primary care clinic should provide clear action points and important care coordination for a child receiving a new diagnosis of autism spectrum disorder (ASD). Unfortunately, a substantial proportion of caregivers report little-to-no post-diagnosis support from their home clinics and primary care providers often report lack of training and resources in providing these supports. Methods: We implemented an intervention package to investigate the impact on the frequency and quality of follow-up care for children with ASD in a busy, high-volume resident continuity clinic. The package consisted of a care coordination scheduling pathway and a standardized clinical template--embedded in the electronic health record (EHR)--that guided providers through best-practice recommendations and patient resources. Results: As a result of these interventions, 74% of patients had ASD-specific follow-up, a more than threefold increase from baseline with a majority of providers using the EHR-embedded template to guide their visit. Providers also indicated a high degree of usability for the system and that it aided them in following best-practice guidelines for ASD care. Conclusion: Through explicit scheduling pathways and a novel EHR template, we saw a significant increase in ASD-specific follow-up visits and implementation of best practices for ASD care, demonstrating a new process for training and engaging primary care providers in clear action steps for post-diagnostic care without having to rely on tertiary referrals.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2025
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1460777
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1460777
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1007/s10803-024-06253-1
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 9
        StartPage: 904
    Subjects:
      – SubjectFull: Children
        Type: general
      – SubjectFull: Autism Spectrum Disorders
        Type: general
      – SubjectFull: Intervention
        Type: general
      – SubjectFull: Residential Care
        Type: general
      – SubjectFull: Health Services
        Type: general
      – SubjectFull: Clinical Diagnosis
        Type: general
    Titles:
      – TitleFull: Enhancing Diagnostic Follow-Up and Care Coordination for Children with Autism in a Busy Resident Continuity Clinic: Leveraging the Electronic Health Record
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Laleh Bahrami
      – PersonEntity:
          Name:
            NameFull: Cara T. Miller
      – PersonEntity:
          Name:
            NameFull: Holly Miller
      – PersonEntity:
          Name:
            NameFull: Kathryn L. Carlson
      – PersonEntity:
          Name:
            NameFull: Tori E. Foster
      – PersonEntity:
          Name:
            NameFull: Abhinaya Ganesh
      – PersonEntity:
          Name:
            NameFull: David Johnson
      – PersonEntity:
          Name:
            NameFull: Barron L. Patterson
      – PersonEntity:
          Name:
            NameFull: Jeffrey F. Hine
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 03
              Type: published
              Y: 2025
          Identifiers:
            – Type: issn-print
              Value: 0162-3257
            – Type: issn-electronic
              Value: 1573-3432
          Numbering:
            – Type: volume
              Value: 55
            – Type: issue
              Value: 3
          Titles:
            – TitleFull: Journal of Autism and Developmental Disorders
              Type: main
ResultId 1