Children with special health care needs (CSHCN) are a large part of the population in developed countries throughout the world.1 Definitions vary, and can encompass children with congenital, acquired and developmental behaviour conditions, degrees of chronicity, technology dependence, limitations in activity or care dependence, and other factors. The broadest prevalence estimates range as high as 18–44% of the general paediatric population.2 3 Complex medical needs and related vulnerabilities in this population might necessitate extensive home care and community services, frequent outpatient visits and use of acute care services. Unfortunately, there are cavernous voids in systematic care of CSHCN.

Several studies have demonstrated the extensive use of emergency services by CSHCN4^–6 as well as general inpatient7 8 and critical care services.9^–12 Dosa et al showed that children with any chronic health condition had a relative risk of 3.3 for unscheduled intensive-care admission versus compared with those without chronic illness. The subgroup with previous “technology-assisted care” had a relative risk of 373.13 Paediatric and emergency medicine taskforces have combined to establish guidelines for optimal pre-hospital and emergency services for this at-risk population.14 15 The Neely Conference ‘Developing Research Criteria to Define Medical Necessity in Emergency Medical Services’ called for inclusion of patients with special healthcare needs as part of future research efforts.16

In this issue of Archives of Diseases of Childhood, Sutton and colleagues17 describe an emergency medicine extension programme intended to attenuate the use of emergency-department (ED) services by CSHCN while improving and expediting the care delivered. I offer kudos to the authors and their staff who provided care as part of the Accelerated Care through Emergency (ACE) Program. The implications of their study, however, should cause readers to pause and consider what necessitated the emergency providers to provide outreach to this population at the outset. Albeit ambitious, the ACE Program should be viewed as a stopgap measure and a stimulus for more comprehensive changes pre-empting emergency care.

Sutton and colleagues17 established content validity for their programme through an advisory group with representation from parents, emergency staff, subspecialty medical providers and representatives from their institution with responsibility for home and community care. This led to development of a 24 hours per day, 7 days a week medical telephone service for CSHCN led by nurse coordinators with physician back-up. Although not explicitly described, the programme also addressed deficiencies in medical record accessibility, need for clinical pathways, individualized care plans, availability of supplies (eg, gastrostomy tubes) and streamlining of ED intake process. A pilot phase helped identify an initial cohort of children with chronic health conditions. The primary measured outcomes were the number of ED visits, number of phone calls and parent satisfaction.

Patients enrolled in the ACE Program had a range of disability diagnoses, including cerebral palsy, genetic disorders and primary cardiac or pulmonary conditions. Eighty percent of participants had some degree of baseline technology dependence. Of note, less than 2% had a community-based paediatrician identified as their primary care service. After an initial rapid enrollment period, the number of new recruits to the programme plateaued, presumably reflecting an exhaustive screening rather than limitations in programme capacity or referral. Programme results were mixed. Parent satisfaction was rated highly. The number of subjective “avoidable ED presentations” decreased. However, there were no significant changes in overall number of ED presentations, time to triage or determination of disposition, subsequent hospitalization, or in the number of phone calls to the programme over time. One could also speculate that any minor trends could be accounted for by an early enrollment bias of children with the greatest needs. Alternatively, the decrease in use over time might correspond to increasing patient age and parental capacity and experience. Enrollees made on average approximately three phone contacts per year. The data showing that the majority (60%) of phone calls occurred after standard office hours (9am–5pm Monday–Friday) are also less significant when considering that “after hours” equates to 76% of the time in a week. No data were presented regarding frequency of calls to other providers, primary care or subspecialty. Without control data, it is impossible to assess the impact of the ACE Program.

Limitations aside, Sutton and colleagues should, again, be applauded for both their clinical and research efforts. They allude to deficiencies in access to medical records, communication, access to medical care and other barriers. Beyond the statistics, there is little doubt that CSHCN and their families who enrolled in the ACE Program have benefited. Institutions, governmental healthcare departments and private insurers will also take heed of any potential cost savings and improve efficiency achieved through “avoided ED visits.” The authors’ assertion that the programme “evolved into a virtual medical home,” however, is perhaps overstated but is significant in its connotations.

The medical home model supported by the American Academy of Pediatrics calls for provision of continuous, developmentally appropriate and comprehensive primary care with referral to, and coordination with, subspecialists. A medical home should be proactive, provide anticipatory guidance and be responsive to changing needs. It is integral to community services, schools, homecare and is family-centred.18 There is recognition that the parents are the constant in the child’s life and that an ongoing partnership with them is essential. A programme that is by definition reactive and focused on acute care cannot fulfil this role. The principles and components behind the medical home are sound; however, uniform implementation and outcome measurement have not been achieved.19

Although the medical home is intended to be for every child and family, CSHCN or those with other potentially life-limiting conditions would seem to benefit most.20 Yet unmet needs in these circumstances, and feelings of professional ownership, have led subspecialists to assume the role of care coordinator, for example, the oncologist for a child with leukaemia, the pulmonologist for a child with cystic fibrosis, the intensivist for a child on chronic ventilation, the endocrinologist for the child with diabetes or, more recently, the emergence of palliative-care providers for a child at the end-of-life. At the extreme, this can lead to the exclusion of the primary care provider. If we are to embrace the medical home model, specialty care should supplement not supplant the primary care role.

Future efforts aimed at improving the care for CSHCN should be targeted at bringing the medical home model into effect and concurrent study of its efficacy as well as its financial effect on families, institutions and the agency that pays for it, whether governmental or private. CSHCN and their families cannot be dependent or reliant on the beneficence and capabilities of individual medical practitioners. Telemedicine, phone-in or walk-in programmes, medical passports and homevisits are all of value and more rigorous study is warranted. These interventions, like the ACE program, should be viewed as a means, not an end.