Continuation of Pediatric Care after Transfer to Adult Care Among Autistic Youth Overlap of Pediatric and Adult Care.

The transition from pediatric to adult health care is a vulnerable time period for autistic adolescents and young adults (AYA) and for some autistic AYA may include a period of receiving care in both the pediatric and adult health systems. We sought to assess the proportion of autistic AYA who continued to use pediatric health services after their first adult primary care appointment and to identify factors associated with continued pediatric contact. We analyzed electronic medical record (EMR) data from a cohort of autistic AYA seen in a primary-care-based program for autistic people. Using logistic and linear regression, we assessed the relationship between eight patient characteristics and (1) the odds of a patient having ANY pediatric visits after their first adult appointment and (2) the number of pediatric visits among those with at least one pediatric visit. The cohort included 230 autistic AYA, who were mostly white (68%), mostly male (82%), with a mean age of 19.4 years at the time of their last pediatric visit before entering adult care. The majority (n = 149; 65%) had pediatric contact after the first adult visit. Younger age at the time of the first adult visit and more pediatric visits prior to the first adult visit were associated with continued pediatric contact. In this cohort of autistic AYA, most patients had contact with the pediatric system after their first adult primary care appointment.

Predicting timely transfer to adult care in a cohort of autistic adolescents and young adults.

BACKGROUND: The transition from pediatric to adult care is a challenge for autistic adolescents and young adults. Data on patient features associated with timely transfer between pediatric and adult health care are limited. Our objective was to describe the patient features associated with timely transfer to adult health care (defined as

"Giving the patients less work": A thematic analysis of telehealth use and recommendations to improve usability for autistic adults.

LAY ABSTRACT: Real-time telehealth visits, called "virtual visits," are live video chats between patients and healthcare professionals. There are lots of steps involved in setting up a virtual visit, which may be difficult for some autistic adults. We interviewed 7 autistic adults, 12 family members of autistic adults, and 6 clinic staff from one clinic in the United States. Our goal was to understand their experiences with virtual visits and see how we can make virtual visits easier to use. We re-read text from the interviews to organize experiences and advice that was shared into topics. We found that autistic adults (or their family members) had to connect with clinic staff many times by phone or online over several days to set up a virtual visit. Participants said that having more experience with technology and using the online patient portal made virtual visits easier to use. But, having issues with technology before the visit could make autistic adults and family members anxious. Clinic staff said it was hard for them to meet the needs of people who were using virtual visits and those who were being seen in person at the clinic. Participants recommended reducing the number of calls between staff and autistic adults or family members using the online patient portal instead. Participants also recommended reminder messages, instruction videos, and approximate wait-times to help autistic adults and family members know what to expect for the virtual visit. Our results are based on peoples' experiences at one clinic, but could help other clinics make virtual visits easier to use for autistic adults and their family members.

Expenditures and Healthcare Utilization of Patients Receiving Care at a Specialized Primary Care Clinic Designed with and for Autistic Adults.

BACKGROUND: We previously found that autistic adults who received care through a primary care embedded specialized clinic, called the Center for Autism Services and Transition (CAST), had higher satisfaction, continuity of care, and preventive care use than national samples of autistic adults. OBJECTIVE: Examine the impact of CAST on healthcare utilization and expenditures. DESIGN: Retrospective study of medical billing data. SAMPLE: CAST patients (N = 490) were propensity score matched to Medicare-enrolled autistic adults (N = 980) and privately insured autistic adults (N = 980) using demographic characteristics. The median age of subjects was 21 years, 79% were male, and the median duration of observation was 2.2 years. MAIN MEASURES: We quantified expenditures and utilization for primary care; emergency department (ED) visits; inpatient hospitalizations; mental health admissions; and outpatient visits. KEY RESULTS: CAST patients had the highest primary care utilization and expenditures. However, CAST patients had significantly lower expenditures than Medicare-enrolled autistic adults for mental health admissions ($1074 vs $1903), outpatient visits ($1671 vs $2979), and total expenditures ($5893 vs $6987), as well as 57% fewer inpatient hospitalizations. Compared to privately insured autistic adults, CAST patients had significantly lower expenditures for mental health admissions ($1074 vs $1362), inpatient hospitalizations ($3851 vs $4513), and outpatient visits ($1671 vs $6070), as well as 16% fewer inpatient hospitalizations, 24% fewer ED visits, and 50% fewer outpatient visits. On average, CAST patients had more ED visits, mental health admissions, and outpatient visits than Medicare-enrolled autistic adults and more mental health admissions than privately insured autistic adults. CONCLUSIONS: Although CAST patients had greater primary care utilization and expenditures, our findings suggest embedding specialized clinics within broader primary care settings could be an alternative to current standards of care and may reduce expenditures and healthcare utilization in other areas, particularly relative to standard care for privately insured autistic adults.

"It was surprisingly equivalent to the appointment I had in person": Advantages and disadvantages of synchronous telehealth for delivering primary care for autistic adults.

LAY ABSTRACT: Autistic adults face many barriers to receiving quality primary health care like clinics that are far away and sensory sensitivities. Real-time telehealth visits, called "virtual visits," are live video chats between the patient and provider. Virtual visits may minimize barriers to care for autistic adults. We wanted to describe advantages and disadvantages of using virtual visits for delivering primary health care for autistic adults. We interviewed 7 autistic adults and 12 caregivers of autistic adults who receive primary care through one clinic. Autistic adults and caregivers said advantages to virtual visits were that (1) patients were more comfortable at home, (2) patients could get health care while avoiding physical contact with other people during the pandemic, and (3) virtual visits were similar to or better than in-person visits. The disadvantages included that (1) there could be technology problems like grainy video, (2) the doctor could not physically examine the patient (e.g. look in ears), and (3) patients sometimes participated less in the virtual visit than they would in person. Virtual visits may be beneficial for autistic adults by eliminating travel to the clinic and avoiding stressful sensory stimuli. We recognize that virtual visits may not work for all patients or in all situations. However, our study shows that primary care virtual visits may be beneficial for autistic adults during and beyond the pandemic.

Characteristics associated with healthcare independence among autistic adults.

Background: Healthcare independence refers to someone's ability to assume responsibility for their own health and complete tasks like taking medication as prescribed or scheduling healthcare appointments. Prior studies have shown that autistic people tend to need more support with healthcare tasks than people with other chronic conditions. We sought to identify modifiable and non-modifiable factors linked with healthcare independence among autistic adults. Method: We conducted a cross-sectional survey to examine how executive functioning skills, restrictive and repetitive behaviors, gender, education, and age were linked with healthcare independence among this population. Participants included: (a) autistic adults (n=19) who are their own legal guardian, who participated via self-report; and (b) family members of autistic adults with a legal guardian (n=11), who provided proxy-reports. Results: Findings differed between self- and proxy-reports. Among autistic adults who self-reported, difficulties in executive functioning were strongly linked with less healthcare independence. Among proxy-reports, greater restrictive and repetitive behaviors were strongly linked with less healthcare independence. According to the proxy-reports, having not completed high school, being older during the healthcare transition, and being male were all independently linked with less healthcare independence. Conclusions: Interventions aimed at supporting executive functioning, providing opportunities to increase independence with healthcare tasks, and reducing the extent to which restrictive and repetitive behaviors interfere with daily activities may be viable options for supporting healthcare independence among autistic adults. Our findings are an important first step for future initiatives to better identify individuals who need additional care coordination, supports, or services to maximize healthcare independence.

Implementation and Evolution of a Primary Care-Based Program for Adolescents and Young Adults on the Autism Spectrum.

Current primary care models are inadequate for adults on the autism spectrum. The Center for Autism Services and Transition (CAST) clinic was developed in 2014 using feedback from parents of adults on the autism spectrum and patient-centered medical home principles. We evaluated the reach of CAST's services. As of January 2021, 858 patients were seen in CAST. Many continue to receive primary care from the CAST clinic. The program has undergone staffing changes but continues to accept new patients. We have added services such as "happy visits," pre-procedure videos, and telehealth visits. CAST provides one example of how to improve primary care for adults on the autism spectrum. More research is needed to assess the effectiveness of the CAST model.

Effects of a Specialized Primary Care Facility on Preventive Service Use Among Autistic Adults: a Retrospective Claims Study.

BACKGROUND: While in some studies, the patient-centered medical home has been linked with increased receipt of preventive services among other populations, there is a paucity of literature testing the effectiveness of medical homes in serving the healthcare needs of autistic adults. OBJECTIVE: To compare the receipt of preventive services by patients at a patient-centered medical home specifically designed for autistic adults (called the Center for Autism Services and Transition "CAST") to US national samples of autistic adults with private insurance or Medicare. DESIGN: Retrospective study of medical billing data. SAMPLE: The study sample included CAST patients (N = 490) who were propensity score matched to Medicare-enrolled autistic adults (N = 980) and privately insured autistic adults (N = 980) using demographic characteristics. The median age of subjects was 21 years old, 79% were male, and the median duration of observation was 2.2 years. MAIN MEASURES: The primary outcome measure was the receipt of any preventive service, as defined by the Medicare Learning Network and AAPC (formerly the American Academy of Professional Coders). Secondary outcome measures included receipt of specific preventive service types (i.e., general health and wellness services, screenings, counseling and therapies, vaccinations, and sexual/reproductive health services). KEY RESULTS: CAST patients had significantly greater odds of receiving any preventive service than Medicare-enrolled (OR = 10.3; 95% CI = 7.6-13.9) and privately insured (OR = 3.1; 95% CI = 2.3-4.2) autistic adults. CAST patients were also significantly more likely to receive screenings and vaccinations than either Medicare beneficiaries (screenings OR = 20.3; 95% CI = 14.7-28.0; vaccinations OR = 5.5; 95% CI = 4.3-7.0) or privately insured beneficiaries (screenings OR = 2.0; 95% CI = 1.6-2.5; vaccinations OR = 3.3; 95% CI = 2.6-4.1). CONCLUSIONS: Autistic adults receiving care through CAST were significantly more likely to recieve preventive care services than national samples of autistic adults. Future comparative effectiveness trials are needed to rigorously assess the impact of primary care-based initiatives to improve care for autistic adults.

"They looked at me as a person, not just a diagnosis": A qualitative study of patient and parent satisfaction with a specialized primary care clinic for autistic adults.

BACKGROUND: Autistic adults have complex physical and mental healthcare needs that necessitate specialized approaches to healthcare. One promising approach is to embed providers with specialized training or specialty clinics for autistic adults within general primary care facilities. We previously found that autistic adults who received their healthcare through one specialty clinic designed with and for autistic adults had better continuity of care and more preventive service utilization than national samples of autistic adults. OBJECTIVE: To characterize factors that increased or decreased satisfaction with healthcare received through a specialty clinic for autistic adults. METHODS: We conducted 30-60-minute semi-structured interviews with autistic adults (N=9) and parents of autistic adults (N=12). We conducted an inductive thematic analysis, using a phenomenological approach. RESULTS: Factors that increased participants' satisfaction included: (1) receiving personalized care from the provider; (2) spending quality time with the provider; and (3) having strong, positive patient-provider relationships. Factors that decreased participants' satisfaction included: (1) lack of access to services due to scarcity of trained providers; (2) difficulty at times communicating with the provider; and (3) system-level barriers such as policies, practices, or procedures. CONCLUSION: Our findings highlight the importance of providers using personalized approaches to care that meet patients' sensory and communication needs and spending quality time with patients to establish strong, positive patient-provider relationships. Our findings also underscore the critical scarcity of healthcare providers who are trained to deliver care for the growing population of autistic adults.

Patient-Level Medication Regimen Complexity in an Adolescent and Adult Population with Autism Spectrum Disorders.

BACKGROUND: Adults with autism spectrum disorder (ASD) frequently experience polypharmacy. However, there is limited understanding of how to quantify medication complexity in this vulnerable population. OBJECTIVES: This study examined medication administration difficulty using the Medication Regimen Complexity Index (MRCI) tool in adolescents and adults with ASD. The outcomes compared the mean total MRCI score with the medication count, described MRCI contributions for over-the-counter medication (OTC), and compared MRCI scores by patient characteristics. METHODS: This was a retrospective chart review of patients aged 7-45 years (mean = 20.1) enrolled in a primary care ASD transitions program. Each patient's listed medications were counted and then scored using the validated MRCI tool. RESULTS: For the 142 patients studied, mean total MRCI was 14.6 ± 14.6 (range 0-89) and mean medication count was 6.3 ± 5.4 (range 0-38). For patients on 0-4 medications (66 of 142; 46.5%), the mean MRCI was 5.5 ± 4.2, 5-9 medications (50 of 142; 35.2%) the mean MRCI was 15.2 ± 6.8, and 10-38 medications (26 of 142; 18.3%) the mean MRCI was 36.5 ± 18.9 (p<0.001). Sixty percent (85 of 142) reported OTC use, which contributed 26.6% to the mean total MRCI. Reported benzodiazepine (mean MRCI 25.8 ± 17.2), antiepileptic (mean MRCI 23.7 ± 16.9), antipsychotic (mean MRCI 19.7 ± 15.9), or antidepressant (mean MRCI 17.0 ± 14.8) use received higher MRCI scores compared to nonuse (p<0.001 for all except antidepressants [p=0.004]). Total MRCI did not differ significantly by age group, sex, or attention-deficit-hyperactivity disorder (ADHD) medication use (stimulant or nonstimulant). CONCLUSIONS: Medication regimen complexity in adolescents and adults with ASD was increased significantly for individuals taking ≥ 5 medications. Central nervous system agent use, other than ADHD therapy, identified patients with higher regimen complexity. The related clinical effects of these findings warrant further investigation.

Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting.

Little has been reported about how to improve health care access and delivery for adolescents and adults with autism spectrum disorder. To understand the contributions to the health disparities in the autism spectrum disorder population, we conducted two independent research approaches to learn about current medical needs. A retrospective chart review was performed to evaluate medical comorbidities and medication use. A focus group was also created to address barriers faced in providing medical care. Of 126 charts reviewed, 49% (n = 62) had intellectual disability, 49% (n = 62) had attention-deficit hyperactivity disorder, 52% (n = 65) had anxiety, 41% (n = 52) had obesity, 31% (n = 39) with a history of aggressive behavior, 31% (n = 31) had depression, 22% (n = 28) had seizures, and 9% (n = 11) had hypertension. A Medical Regimen Complexity Index score was determined to examine medication use trends in the autism spectrum disorder population. Medical Regimen Complexity Index scores were significantly higher for patients with intellectual disability, patients with seizures, and patients with a history of aggressive behavior. Both the focus group and our pre-visit assessment identified the waiting room and waiting time as barriers to care. Understanding the comorbidities, polypharmacy, and medical barriers should provide a better understanding of the current health care access and delivery needs of adolescents and adults with autism spectrum disorder.

Pharmacogenomic testing: aiding in the management of psychotropic therapy for adolescents with autism spectrum disorders.

Adolescents with autism have higher rates of anxiety than the general adolescent population. They often struggle to express psychological symptoms verbally where their symptoms may manifest as withdrawal and agitation. Adolescent patients with autism have higher rates of polypharmacy and high-risk psychiatric medication use (eg, atypical antipsychotics) than other patients with psychiatric illness. Primary care pediatricians are at the front lines of psychiatric management for patients with autism. Yet, they have inadequate access to pediatric psychiatry for complex medication management. Pharmacogenomic testing can provide personalized drug metabolism profiles for a majority of psychotropic medications. Primary care based pharmacogenomic testing for adolescents with autism on one or more psychiatric medications may help individualize and optimize complex medication regimens, while promoting drug safety.

Optimizing the Office Visit for Adolescents with Special Health Care Needs.

Youth with special health care needs (YSHCN) experience health care disparities and often need additional support to receive optimal medical care, particularly in adolescence as they prepare to transition to adult care. Many medical practices struggle to address their needs. Here, we discuss approaches to improve medical care in office-based settings for YSHCN. Office visits can be optimized by training staff in developmentally appropriate care and ensuring that the physical office space facilitates care. Participating in previsit preparation, including managing patient registries of YSHCN, engaging in regular team huddles, and incorporating previsit planning, can improve preparation and ensure that important needs are not overlooked. Additionally, approaches to improve patient and medical provider comfort with office visits with YSHCN, including approaches to measuring vital signs, examining patients, and communicating with patients with various disabilities, are reviewed. Finally, we discuss methods of supporting adolescents with special health care needs in developing self-management skills that will allow them to be better prepared to enter adult health care settings when appropriate. Although YSHCN can present challenges to medical teams, their care can be improved by developing office-based changes and processes to support improved care for these patients. This may help overcome the health care disparities they experience and increase comfort for all members of the medical team.

Management of concussion in the professional football player.

There is no other sport that has come under greater scrutiny surrounding the incidence and treatment of concussion than football, and there is no other professional sports league that has experienced more intense focus of its handling of concussions than the National Football League (NFL). The NFL has received significant criticism of their management of concussion in players from both the popular press and the medical community. However, those working with active NFL players have changed their assessment and treatment of these injuries as the knowledge of concussions has evolved over time. We review the current approach to the management of concussions in the professional football player.

Etiology of dyspnea in elite and recreational athletes.

BACKGROUND: Breathing complaints are common in athletes. Studies have suggested that the prevalence of asthma and exercise-induced bronchoconstriction (EIB) is higher in elite athletes than the general population. Vocal cord dysfunction (VCD) may mimic asthma and EIB as a cause of dyspnea in athletes. However, the majority of studies to date have primarily relied on symptoms to diagnose VCD, and there are limited data on coexistence of asthma, EIB, and/or VCD. It is well established that symptoms alone are inadequate to accurately diagnose EIB and VCD. Our goal was to define via objective testing the prevalence of asthma, EIB, VCD alone, or in combination in a cohort of athletes with respiratory complaints. METHODS: A retrospective chart review was done of 148 consecutive athletes (collegiate, middle school, high school, and recreational) referred to a tertiary care center's asthma center for evaluation of respiratory complaints with exercise. An evaluation including medical history, physical examination, and objective testing including pulmonary function testing (PFT), eucapnic voluntary hyperventilation, and video laryngostroboscopy, were performed. RESULTS: The most common symptom was dyspnea on exertion (96%), with < 1% complaining of either hoarseness or stridor. The most common diagnosis prior to referral was asthma (40%). Only 16% had PFTs prior to referral. Following evaluation by a pulmonologist, 52% were diagnosed with EIB, 17% with asthma, and 70% with VCD. Of those diagnosed with asthma before our evaluation, the diagnosis of asthma was confirmed, with PFTs in only 19 of 59 (32%) athletes based on our testing. Vocal cord dysfunction was more common in females and in adolescent athletes. Coexistence of multiple disorders was common, such as EIB and asthma (8%), EIB and VCD (31%), and VCD and asthma (6%). CONCLUSIONS: Asthma and EIB are common etiologies of dyspnea in athletes, both competitive and recreational. However, VCD is also common and can coexist with either asthma or EIB. Vocal cord dysfunction may contribute to exercise-related respiratory symptoms more frequently in middle school- and high school-aged athletes than in college athletes. Effective treatment of dyspnea requires appropriate identification and treatment of all disorders. Classic symptoms of stridor and/or hoarseness are often not present in athletes with VCD. Accurate diagnosis of asthma, EIB, and VCD requires objective testing and can prevent exposure of patients to medications that are ineffective and have potential adverse side effects. Furthermore, there is need for increased awareness of VCD as a common cause of respiratory complaints in athletes, either as a single diagnosis or in combination with EIB, especially in females, as well as middle school and high school athletes.

The monomeric G proteins AGS1 and Rhes selectively influence Galphai-dependent signaling to modulate N-type (CaV2.2) calcium channels.

Activator of G protein Signaling 1 (AGS1) and Ras homologue enriched in striatum (Rhes) define a new group of Ras-like monomeric G proteins whose signaling properties and physiological roles are just beginning to be understood. Previous results suggest that AGS1 and Rhes exhibit distinct preferences for heterotrimeric G proteins, with AGS1 selectively influencing Galphai and Rhes selectively influencing Galphas. Here, we demonstrate that AGS1 and Rhes trigger nearly identical modulation of N-type Ca(2+) channels (Ca(V)2.2) by selectively altering Galphai-dependent signaling. Whole-cell currents were recorded from HEK293 cells expressing Ca(V)2.2 and Galphai- or Galphas-coupled receptors. AGS1 and Rhes reduced basal current densities and triggered tonic voltage-dependent (VD) inhibition of Ca(V)2.2. Additionally, each protein attenuated agonist-initiated channel inhibition through Galphai-coupled receptors without reducing channel inhibition through a Galphas-coupled receptor. The above effects of AGS1 and Rhes were blocked by pertussis toxin (PTX) or by expression of a Gbetagamma-sequestering peptide (masGRK3ct). Transfection with HRas, KRas2, Rap1A-G12V, Rap2B, Rheb2, or Gem failed to duplicate the effects of AGS1 and Rhes on Ca(V)2.2. Our data provide the first demonstration that AGS1 and Rhes exhibit similar if not identical signaling properties since both trigger tonic Gbetagamma signaling and both attenuate receptor-initiated signaling by the Gbetagamma subunits of PTX-sensitive G proteins. These results are consistent with the possibility that AGS1 and Rhes modulate Ca(2+) influx through Ca(V)2.2 channels under more physiological conditions and thereby influence Ca(2+)-dependent events such as neurosecretion.

The role of montelukast on perennial allergic rhinitis and associated sleep disturbances and daytime somnolence.

Perennial allergic rhinitis (PAR) often causes sleep disturbances and associated daytime somnolence, thus resulting in a poor quality of life. Various clinical interventions in patients suffering from the disorder seek to improve symptoms and quality of life. Additional studies are needed to establish whether the alleviation of PAR symptoms, particularly the reduction of congestion, will improve sleep quality and reduce daytime somnolence. This study seeks to determine whether treatment with montelukast is more effective than placebo in reducing nasal congestion and sleep disturbances, resulting in reduced daytime somnolence and fatigue in patients with PAR. Thirty-one subjects were enrolled in a double-blinded, placebo-controlled study using Balaam's design. Patients were treated with montelukast or placebo. Collected subjective data included a daily diary recording nasal symptoms, sleep issues, and daytime fatigue, the Functional Outcomes of Sleep Questionnaire, the Epworth Sleepiness Scale, Juniper's Rhinoconjunctivitis Quality of Life Questionnaire, the Rhinitis Severity Scale, the Calgary Sleep Apnea Quality of Life Index, and Trail Making tests. Subjects treated with montelukast, compared with placebo, showed a statistically significant improvement in daytime somnolence (p = 0.0089) and daytime fatigue (p = 0.0087), with both factors improving with montelukast and worsening with placebo. In a small cohort of subjects, montelukast, when compared with placebo, improved the symptoms of PAR and reduced the fatigue and daytime somnolence associated with the disorder.

How do topical nasal corticosteroids improve sleep and daytime somnolence in allergic rhinitis?

Therapy for rhinitis improves sleep quality and symptoms of daytime sleepiness. This improvement with therapy may be secondary to anti-inflammatory effects, leading to a reduction of inflammatory mediators, or to a mechanical reduction of congestion directly leading to improvement in sleep disturbance. We combined our data from 3 placebo-controlled studies of intranasal corticosteroids in patients with perennial rhinitis to determine whether a correlation between the reduction of congestion and improved sleep and daytime somnolence existed. The pooled data of budesonide, flunisolide, and fluticasone demonstrated significantly decreased nasal congestion, sleep problems, and sleepiness in treated patients. The data demonstrated a correlation between a reduction in nasal congestion and an improvement of sleep (P < .01) and daytime somnolence (P = .01). Thus, topical intranasal corticosteroids should be used to decrease nasal congestion and to improve sleep and daytime somnolence in patients manifesting these symptoms.