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Best practices: Kids with special healthcare needs


An estimated 10.2 million children in the United States have special healthcare needs. The numbers of children with special healthcare needs are continuing to rise as medical advances foster survical of children with previously lethal congenital anomalies and conditions.

Key Points

An estimated 10.2 million children (14%) in the United States have special healthcare needs.1 Children and youth with special healthcare needs (CYSHCN) are defined by the US Department of Health and Human Services' Maternal and Child Health Bureau (MCHB) as "those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally."2 The numbers of CYSHCN are continuing to increase as medical advances foster survival of children with previously lethal congenital anomalies and conditions including cystic fibrosis, complex congenital heart disease, and sickle cell disease.

The definition of CYSHCN is based on service use. CYSHCN and their families have similar experiences in functioning and healthcare needs such as prescription medications, subspecialty care, and behavioral/mental healthcare, despite varying diagnoses.4 CYSHCN may thus have conditions as diverse as asthma, diabetes mellitus, cerebral palsy, Down syndrome, autism, or cancer. Any of these conditions may bring higher medical care costs, missed school days, negative quality of life, and financial burdens to the family. It is estimated that the costs of healthcare are about 3 times higher for CYSHCN than for other children because of the higher need for and use of services.5

The effective medical care of CYSHCN often requires more time and effort than that needed for patients without these complex health issues. The primary care physician (PCP) is a key player in addressing the health of CYSHCN, because that continuous, trusting relationship helps families maintain health and wellness. Many resources are available to help the PCP care for CYSHCN.6

Implementing medical home concepts into your practice allows you to better accommodate CYSHCN. Many tools and resources are available from the Web site of the American Academy of Pediatrics (AAP) National Center for Medical Home Initiatives at http://www.medicalhomeinfo.org/. The Center for Medical Home Improvement ( http://www.medicalhomeimprovement.org/) offers the Medical Home Index, a validated self-assessment tool allowing practices to systematically identify areas for improvement in care delivery.13,14 Finally, the National Committee for Quality Assurance has launched a program in which practices conduct self-assessments with the potential to become certified in levels of medical home ( http://www.ncqa.org/tabid/631/default.aspx).

Office practices for the child with special healthcare needs

Caring for the child with special needs entails preparation, follow-up, and specific practices during the face-to-face encounter. The role of the PCP may vary significantly depending on the child. Children with certain conditions such as cystic fibrosis and diabetes may receive comprehensive interdisciplinary care led by a subspecialty service. Other CYSHCN may not have a condition falling under the scope of a subspecialty service. In such cases, the PCP supervises all medical care and community-based services. For all children, the PCP provides anticipatory guidance, growth and developmental screening, first-line evaluation for acute conditions, and care coordination of subspecialty and community services.

Preparing for the patient visit

Before health supervision visits with CYSHCN, we recommend that you undertake some preparatory steps. First, you need to develop a patient registry of CYSHCN. You will also have to schedule appropriate time for visits, facilitate a previsit contact, read about the condition and review previous records, and consult any pertinent clinical practice guidelines about the condition. All of these measures serve an important purpose in your management of CYSHCN.

Develop a patient registry of CYSHCN so that each patient can be readily identified. The registry can be created via a paper system such as a spreadsheet, by an alert within an existing medical record, Web based via data tracking software, or embedded within an electronic medical record system. The registry can be developed by formal chart review, provider recall, billing code/diagnosis retrieval, electronic medical record queries, or formal screening during visits. Consider including the patient ID/medical record number, date of birth, diagnoses, severity level, durable medical equipment needs, need for home nursing services, provider designation, and contact information (including addresses). Advantages of registries include grouping appointments for children with specific diagnoses or needs on certain days, sorting by diagnoses for information dissemination or event planning, tracking patients for age-specific issues such as early intervention, designation for care coordination or telephone management, and billing tracking or reconciliation for specialized codes or services.

Schedule appropriate time for visits, because many CYSHCN benefit from having additional visit time; up to 30 minutes may be needed for well visits. Some practice management systems can alert staff to the presence of a patient with special needs, leading to a double time slot or scheduling on a day with specific available resources. Alternatively, scheduling at the end of a session/day may provide a buffer if the session runs over.

The previsit contact can be a telephone or electronic contact, performed within several days of the visit, to review interim history, medications, specialist visits, and parental concerns for discussion. This contact may be done by a nurse, office-based care coordinator, or office staff team member. The previsit contact may improve the efficiency of your visit and overall satisfaction of the youth and family. Consider a brief form in the chart identifying prioritized concerns, interval history, and medications. Practices with electronic medical records may have Internet portals that families can access that provide similar information. Previsit contacts are not separately billable because they are often bundled with the code for the visit/encounter, but they may enable you to schedule more focused and efficient face-to-face time.

Read about the condition and review previous records so you acquire a working knowledge of the medical condition. The PCP does not need to know everything about the diagnosis and management but should have enough knowledge to perform an appropriate history and physical examination and guide the family toward appropriate resources. Assess if additional records are needed prior to the visit.

Consult clinical practice guidelines that are available for some specific conditions such as sickle cell disease, Turner syndrome, and achondroplasia. Two Web site sources of information on guidelines are the American Academy of Pediatrics (AAP) policy page at http://aappolicy.aappublications.org/ and the National Guideline Clearinghouse at http://www.guidelines.gov/. Place a copy of the clinical guidelines in the patient's chart. Refer to guidelines during the visit and any correspondence between visits. Electronic medical records may be able to incorporate clinical practice guidelines into encounter forms as reminders for clinical decision-making and information.

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