The PCMH has become a vital element in the care of all pediatric patients, endorsed by the leading physician organizations. The core tenets are to create expanded access, better communication, and coordinated care and to do this in partnership with the patient and/or family. 11 Applying such a model of care to CMC leads to improved clinical outcomes and decreased financial and logistical burdens in providing care to this patient population. 3,6,12 For CMC, the medical home encompasses an entire team of providers, including primary care, specialists, therapists, case managers, and community resources. 3 The family is a critical part of this type of coordinated care because for the medically complex child, family members may find themselves taking on a medical role as they navigate a multitude of medical supplies, equipment, and technology. By definition, medically complex children require more frequent access to both routine and acute care visits. 6
The importance of accessing a member of this team is critical for CMC. Having the ability to seek guidance from a member of their own medical team can help prevent ED visits, costly transfers, and hospital stays. It has been documented that parents are more likely to seek care at a hospital if they are unable to reach a provider who knows their child. The ability to connect a child with a member of their medical team may help to decrease the need for acute hospitalization. 13 Telehealth is increasingly being proven to be a valuable tool to achieve these goals and to connect patients and their families with the providers who know and understand their complex needs.
The need for these visits may arise in a host of settings. School-based programs using both synchronous real-time video consultations and store-and-forward images have been shown to be effective for all children, including those with special needs. 12,13,14 Such programs allow children with developmental disabilities and behavioral issues to be examined by a familiar local provider. In addition to the benefits of minimal disruption to the parent and child's day, these programs help avoid the need for costly and disruptive transport. Children with special health care needs may have emotional and/or behavioral issues, leading to fear of unfamiliar settings or providers. In a review of one school-based program, school staff described a perceived reduction in stress for the child and an increased likelihood of a successful examination. 14
Parents or caregivers in the home setting often report difficulties managing CSHCN at home, and some have reported delays in seeking care to avoid the burdens of transport and hospital-based care. 13 Bringing assessments to the home via telehealth helps provide reassurance and guidance as to the appropriate management and may lead to better outcomes attributable to earlier intervention. One such home program connected children on home ventilator support and their caregivers with their care team. Telemedicine improved clinical decision making and increased parental confidence in the assessment and treatment recommendations. 15 This program provided real-time visual assessment of children in their homes. As technology advances with the development of devices that support the remote assessment of heart and breath sounds, temperature, otoscopic examination, blood pressure, blood glucose, and other parameters, 16 remotely located clinicians can replicate the in-person assessment of a medically complex child.
In addition to acute evaluations, routine assessments of the child in the home may be preferable to exams in an office setting. Having a child in a familiar environment provides invaluable insight, not only to physicians but also to therapists, counselors, and other members of a medically complex child's health care team. Other services that may be more effective in the home setting include palliative care and pain services. In caring for medically complex children, this is often required as complex diseases progress. Studies have shown the feasibility of providing palliative care in the home setting for pediatric patients, with a reduction in costs and need for travel. 17–19