The editors and current author would like to thank and acknowledge the significant contribution of the previous author of this chapter from the 2004 first edition and 2015 second edition, Dr. Melinda Ashton. This current third edition chapter is a revision and update of the original author’s work.
A 7 year old male with autism spectrum disorder presents to your office for his annual well child visit. He is accompanied by his mother, who is primarily Spanish speaking. You have cared for this child since his birth. His mother had to take off from work today, as she has multiple concerns she is waiting to discuss:
1. He is having some difficulty in school. He is struggling to learn to read and continues to play only by himself. His teacher called her yesterday to report that he has been unable to sit still during class and has not been completing assignments on time.
2. He has frequent complaints of stomach pain. He has a good appetite but has always been a picky eater.
3. He has been having ear pain, runny nose, and irritability for the past three days.
Exam: Vital signs are normal. Weight 31 kg (95th percentile), height 119 cm (47 inches) (30th percentile). BMI is 21.7 (99th percentile). In general, he appears to be an overweight, friendly child who is cooperative. He appears to be his stated age. He is active in the exam room, exploring the contents of the drawers and cabinets. He interrupts his mother repeatedly during the interview. His tonsils are large but not inflamed. His nose has minimal mucus congestion. His ear exam shows normal tympanic membranes. His heart is regular without murmurs. His pulses are normal. His abdominal and neurologic screening exams are normal.
The above case highlights an example of a family faced with a challenging situation which is the following: a patient with autism spectrum disorder (ASD) and possibly attention deficit hyperactivity disorder (ADHD). This boy will need to work with various specialists such as a developmental-behavioral specialist, behavioral health, speech and language therapy, occupational therapy, and special education in the classroom to manage his conditions. Consideration to screening and prevention of cardiovascular disease should be given due to his obesity. In this same visit, two non-emergent problems of stomachache and ear pain must be addressed. Does this child require a referral to a gastroenterologist and/or otolaryngologist? Or is this something that can be taken care of by the general pediatrician? Additionally, a Spanish interpreter should be present to best communicate medical information to this child’s mother. A proper medical home should address and coordinate all these needs to help him reach his highest developmental potential. Expecting the family to manage all these appointments and specialists may be unrealistic, and it is the job of the medical home to assist the family in navigating all these tasks.
The American Association of Pediatrics (AAP) identifies an optimal medical home as one that is accessible, family centered, continuous, comprehensive, coordinated, compassionate, and culturally effective (1). The pediatric medical home is led by a pediatrician with the responsibility to maximize health outcomes in children via preventive care and anticipatory guidance, provide a positive family experience during care, and reduce unnecessary costs and hospital visits. Ideally, the medical home is the initial point of contact for medical and behavioral concerns from the family. To optimize family experience and clear communication, any language or culture barriers should be addressed. In the above case, the presence of a Spanish interpreter should be arranged in advance.
Children who have medically complex and chronic conditions are at highest risk of receiving suboptimal care due to requiring more frequent visits with multiple providers of different specialties, additional non-physician therapy visits, polypharmacy management, home management of medical devices and appliances. In many cases, families have poor access to these specialized forms of care due to socioeconomic barriers (2,3). They can benefit significantly from the medical home that coordinates care, anticipates needs, and enhances communication with other core supporters of the child’s health (4).
Of the complex pediatric conditions, children with autism spectrum disorder are half as likely to receive care through the medical home model (5). This has resulted in late identification and limited education of the family. Upholding the medical home principles for children with ASD is of particular importance, since 98% of parents of children with ASD report the need for at least one specialist, and the risk for physical and developmental conditions are higher compared to children without ASD (5). Many of these children have concurrent, chronic medical and behavioral problems including intellectual disability, depression, anxiety, epilepsy, and ADHD (6). Long-term consistent follow up is key to help them transition to adult-oriented systems.
A large part of managing children with complex conditions involves close coordination with subspecialists. Certification is available from the American Board of Pediatrics (ABP) in the following pediatric subspecialties: adolescent medicine, pediatric cardiology, child abuse pediatrics, pediatric hospitalist medicine (inpatient pediatrics), pediatric critical care medicine, developmental-behavioral pediatrics, pediatric emergency medicine, pediatric endocrinology, pediatric gastroenterology, pediatric hematology/oncology, pediatric infectious diseases, neonatal-perinatal medicine, pediatric nephrology, pediatric pulmonology, and pediatric rheumatology. Certificates for the following subspecialties are co-sponsored by the ABP with other American Board of Medical Specialties (ABMS) boards: hospice and palliative medicine, medical toxicology, sleep medicine, sports medicine, genetics, and pediatric transplant hepatology. (7)
Subspecialty certification (from other specialty Boards) is also available in pediatric anesthesiology, pediatric dermatology, pediatric emergency medicine, adolescent medicine, sports medicine, pediatric otolaryngology, pediatric pathology, pediatric rehabilitation medicine (physiatry), child and adolescent psychiatry, neurodevelopmental disabilities, pediatric radiology, and pediatric surgery (8). Other specialties may offer additional pediatric training to their fellows to allow them to be designated as subspecialists. For example, pediatric orthopedists and pediatric ophthalmologists have additional training and skills necessary for the appropriate care of children.
A good pediatric primary care physician should also work with non-physician partners. Interactions with school personnel, public health nurses, social workers, various therapists (such as speech/language therapists, occupational therapists, and physical therapists), early childhood educators, or daycare providers are a common part of pediatric practice today. Learning to interact appropriately with these individuals, and to gain from their expertise, is an important part of pediatric training.
Access to medical homes has been shown to impact the well-being of the child by removing barriers to care and relieving parents of the isolated responsibility of managing all their child’s conditions. While the medical home model is especially beneficial in children with special healthcare needs (CWSHN), it is the standard recommendation for all children to have (9). Primary care importantly provides individualized prevention through vaccinations, growth and development monitoring, and treatment of acute, non-emergent concerns.
The AAP recommends the medical home as the optimal place for children to have non-emergent acute concerns addressed (10). However, many parents instead turn to urgent care, retail clinics, or outside telemedicine for these concerns. Urgent care can provide relatively quick service at a low cost without the requirement of scheduled appointments and can variably offer imaging, labs, and treatment of minor injuries. Retail clinics are those typically found in department stores, supermarkets, and retail pharmacies that similarly do not require appointments and have low fees. Telemedicine, the provision of health services through communication technology, can be utilized by the medical home but also exists as an entity external to the medical home through employer programs or partnerships with retail clinics. While these alternatives may provide convenience and accessibility, they come with many disadvantages to the pediatric population compared to treatment through the medical home. Risks include the following: fragmented care, treatment without consideration of the child’s specific past medical history, missed opportunities for preventive services, tests without proper follow up, treatment of physical symptoms without recognition of behavioral causes, and importantly, suboptimal care of children by adult-based providers (10). These alternative services sometimes do not share the same medical record system as the medical home, leading to the pediatrician not having a complete record of all health information. These drawbacks are especially impactful in infants. The AAP has now recommended against the use of these services not directly connected to the medical home in children less than 2 years of age. Emergency departments do not fall into the category of these alternative clinics and are always recommended for treatment of children with emergent needs.
Treating the non-emergent acute needs of all patients may present as a challenge for pediatricians given the limited time availability. Efforts to combat this may include extending hours, utilizing telehealth to increase access, and coordinating after-hours care when the medical home is unavailable. Communication with the pediatrician is important, and there are various avenues to do so. There are emergency contact numbers for the physician, paging/texting services, emails, messaging capabilities built into the electronic medical record system, and nurse triage lines. It is essential that the family know how to reach the physician after-hours because not all providers have the same system.
Another benefit of the medical home is continuity of care. As children grow, new risks, guidance, and preventive measures should be considered at each stage of development. Infancy requires close attention to nutrition, immunizations, growth, anticipatory guidance, and prevention of serious infections via immunizations. The childhood period relies on the rapport previously established with the family, as many common childhood illnesses are benign and depend largely on anticipatory guidance to prevent unnecessary emergency room visits. Involvement in school and sports become increasing important through late childhood. Transition to adolescence introduces new risks of substance use, injuries, behavioral health conditions, and reproductive health, and requires emphasis on emotional and social well-being. Anticipation of these changing needs and initiation of preventive protocols and open communication are strategies pediatricians can employ to minimize injuries and harm. Studies have shown that children in medical homes were more likely to receive preventive services including appropriate vaccinations, sexually transmitted infection (STI) screening, and contraceptives compared to those without medical homes. (11)
In addition to interactions with subspecialty physicians and others, the role of a pediatrician is complicated by the financial structures that impact the ability to provide care that is affordable for the families they see. Many children in the United States are covered by Medicaid (or the various individual state plans that serve the Medicaid population), and although there may not be out of pocket expenses for these children, there are still rules, restrictions, and requirements that must be followed for the desired care to be provided. (12)
Briefly, there are also differences in payment arrangements for physicians. There are fee for service (FFS) systems where doctors are paid for the services they deliver (13). Sometimes these require referrals from the primary care provider, whereas at other times the family can self-refer to specialists. There are other arrangements where physicians are paid on a per member, per month (PMPM) basis, which is known as capitation (14). In this system, the physician, the physician’s employer, or health maintenance organization (HMO) is paid a fixed amount for a certain period of time. All the referrals, care coordination, diagnoses, and treatments given to the patient is paid for with this fixed fee. With careful and proper distribution and utilization of resources, healthcare can become more cost-effective. (15, 16)
Pediatric primary care fulfills a challenging yet important role in ensuring that each child reaches their full potential. This is best approached through the medical home model, which may involve extensive care coordination, many hours of reassurance, attention to age-specific risks and preventive care, and management of non-emergent, acute concerns. The medical home model upheld by the pediatrician ultimately provides comprehensive, family-centered care to children that prioritizes their best health outcomes.
Questions
1. True/False: Urgent care facilities and retail clinics commonly have physicians specialized in pediatric care.
2. True/False: The medical home model only benefits children with special healthcare needs.
3. True/False: Social workers, teachers, language therapists, and occupational therapists are commonly involved as partners with the primary pediatrician in the medical home model.
References
1. Medical Home Initiatives for Children with Special Needs Project Advisory Committee. The Medical Home. Pediatrics. 2002;110(1):184-186.
2. Lerner CF, Klitzner TS. The medical home at 50: are children with medical complexity the key to proving its value? Academic Pediatrics. 2017;17(6):581-588.
3. Lichstein JC, Ghandour RM, Mann MY. Access to the medical home among children with and without special health care needs. Pediatrics. 2018;142(6):1795. https://doi.org/10.1542/peds.2018-1795
4. Akobirshoev I, Parish S, Mitra M, Dembo R. Impact of medical home on health care of children with and without special health care needs: update from the 2016 National Survey of Children’s Health. Matern Child Health J. 2019;23(11):1500-1507.
5. Todorow C, Connell J, Turchi RM. The medical home for children with autism spectrum disorder: an essential element whose time has come. Current Opinion in Pediatrics. 2018;30(2):311-317.
6. Rast JE, Shattuck PT, Roux AM, Anderson KA, Kuo A. The medical home and health care transition for youth with autism. Pediatrics. 2018;141(Supplement 4):S328-334.
7. American Board of Pediatrics. Subspecialty Certifications & Admission Requirements. https://www.abp.org/content/subspecialty-certifications-and-admission-requirements, May 3, 2022.
8. American Board of Medical Specialties. Specialty and Subspecialty Certificates. https://www.abms.org/member-boards/specialty-subspecialty-certificates/, May 3, 2022.
9. Long WE, Bauchner H, Sege RD, Cabral HJ, Garg A. The value of the medical home for children without special health care needs. Pediatrics. 2012;129(1):87–98
10. Conners GP, Kressly SJ, Perrin JM, Richerson JE, Sankrithi UM, CARE SO, Simon GR, Boudreau AD, Baker C, Barden GA, Hackell J.. Pediatrics. 2017;139(5). https://doi.org/10.1542/peds.2017-0629
11. Garcia-Huidobro D, Shippee N, Joseph-DiCaprio J, O’Brien JM, Svetaz MV. Effect of patient-centered medical home on preventive services for adolescents and young adults. Pediatrics. 2016;137(6). doi: 10.1542/peds.2015-3813
12. Medicaid.gov. November 2021 Medicaid & CHIP Enrollment Data Highlights. https://www.medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollment-data/report-highlights/index.html, April 24, 2022.
13. Navathe AS, Emanuel EJ, Bond A, Linn K, Caldarella K, Troxel A, Zhu J, Yang L, Matloubieh SE, Drye E, Bernheim S, Lee EO, Mugiishi M, Endo KT, Yoshimoto J, Yuen I, Okamura S, Stollar M, Tom J, Gold M, Volpp KG. Association between the implementation of a population-based primary care payment system and achievement on quality measures in Hawaii. JAMA. 2019;322(1):57-68.
14. Gratale D, Viveiros J, Boyer K. Paediatric alternative payment models: emerging elements. Curr Opin Pediatr. 2022;34(1):19-26.
15. HHS News: HHS To Deliver Value-Based Transformation in Primary Care (Apr 22, 2019). https://www.cms.gov/newsroom/press-releases/hhs-news-hhs-deliver-value-based-transformation-primary-care, April 20, 2022.
16. Emanuel EJ, Mostashari F, Navathe AS. Designing a Successful Primary Care Physician Capitation Model. JAMA. 2021;325(20):2043–2044. doi:10.1001/jama.2021.5133
Answers to questions
1.False, 2.False, 3.True