Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities

Families who have children with special health care needs often face multiple challenges when trying to coordinate the primary medical care of their children with the additional care they receive, or need to receive, from numerous medical and non-medical specialists. In an effort to address these and other challenges, the Center for Persons with Disabilities at Utah State University and the Budge Clinic Pediatric Unit, an Intermountain Health Care Center, initiated the Coordinated Family Support project (CFS) to establish a medical home for children with special health care needs. A medical home is defined by the American Academy of Pediatrics, National Center for Medical Home Initiatives for Children with Special Health Care Needs (2004), as follows:

A medical home is not a building, house, or hospital, but rather an approach to providing health care services in a high-quality and cost-effective manner. Children and their families who have a medical home receive the care they need from a pediatrician or other health care professional. Pediatricians, families, and allied health care professionals act as partners in a medical home to identify and access all the medical and non-medical services needed to help children and their families achieve their maximum potential. (p. 2)

The overall purpose of establishing a medical home for children in the Budge Clinic is to provide an improved level of care that is more coordinated, comprehensive, family-centered, compassionate, culturally competent, continuous, and accessible. A critical component of this improved care is use of a strategy that will be described in the remainder of this article: the medical summary.

Medical Summaries

The CFS project team first encountered the idea of using medical summaries in 2003 while participating in the National Medical Home Learning Collaborative conducted by the National Initiative for Children’s Healthcare Quality. When the CFS team heard about the benefits of medical summaries from several other pediatric practices in the Collaborative, they decided to focus their efforts on adapting this tool for use at the Budge Clinic for each child involved with the CFS project.

The basic idea behind a medical summary is to take all of the critical medical information for a child that is usually scattered throughout the medical chart (often multiple charts) and place it into an easy to read one-page (front and back) document. This summary can then be used by families and primary care physicians to communicate more effectively with other medical and non-medical providers who may not be aware of the many unique needs of a particular child, and who do not have access to the full medical chart and/or time to comb through hundreds of pages of records looking for the most recent lab results or lists of medications.

The medical summary can be particularly helpful to the family when a child is seen by a doctor covering for their primary care physician, by a specialist for the first time, or during a visit to the emergency room. With a medical summary in hand, a family does not have to repeatedly recite an often lengthy medical history to each new medical provider with the hope of not leaving out anything vital. Conversely, the medical summary can be very helpful to physicians seeing a child for the first time. The medical summary can save physicians from having to spend significant amounts of time trying to pull vital information from charts (if the charts are even available for review) or from replicating costly and time-consuming tests before providing treatment. All of this leads to medical care that is more coordinated, comprehensive, and family-centered, and subsequently less frustrating, time-consuming, and expensive.

The medical summary form that is currently used at the Budge Clinic has undergone multiple revisions during the past year and a half, based on feedback from both the medical staff at the clinic and families participating in the CFS project. Currently, the medical summary contains the following main sections:

• Patient/family contact information.
• Principle diagnosis.
• Unique clinical facts/special considerations.
• Baseline data for vital signs/neurological status.
• Routine lab/x-rays etc.
• Immunizations.
• Dates of past hospital admits/reason.
• Consultants/specialists with contact information and date of last visit.
• Home care agency and equipment.
• Rehabilitation providers.
• School services received with contacts.
• Community resources being accessed.
• Team/family goals.
• Common emergency conditions with treatment considerations.
• Allergies list.
• Typical problems list.
• Medications list.

The process of completing a medical summary for each new child in the CFS project begins with the medical home care coordinator and/or other medical assistants in the practice pulling information needed for the form from the medical chart(s). A draft of the medical summary is then sent to the family for their review and input, which is used to complete the form. After the changes and updates received from the family are made, the draft summary is sent to the primary care physician for their review and input. A copy of the completed medical summary is then sent to the family for them to use as they see fit. Some families provide copies of the medical summary to the specialists they see, the school, and/or other community resource providers with whom they interact. Other families maintain one copy and take it with them to the emergency room or other medical appointments. The original copy is kept in the child’s medical chart.

In order for the medical summary to be a viable document that is useful to both medical providers and families, it must be kept current. In the CFS project, the medical home care coordinator has the primary responsibility for ensuring that each child’s medical summary is updated as often as needed. To accomplish this task, the care coordinator works closely with the family, the primary care provider, and any other medical providers to maintain the most accurate summary possible. At the Budge Clinic this task is made easier by a computer system known as Clinical Workstation.

Clinical Workstation allows any medical provider in or approved by the Intermountain Health Care system to access a child’s medical summary on demand so that primary and specialty care can be better coordinated from the beginning. Specialists can post notes, lab results, x-rays, or any number of other test results in real-time for the primary care physician to review and vice versa. This can be particularly helpful to families who have often been left to coordinate the exchange of information between multiple specialists and their child’s primary care physician on their own. These timely exchanges of information allow the primary care physicians and specialists to more effectively coordinate the treatment of the often complex cases involving children with special health care needs. Additionally, Clinical Workstation allows the care coordinator to keep the medical summaries updated more accurately and frequently, which allows families to have the information they need to make important decisions about the care.

Even with the use of Clinical Workstation, completing medical summaries for children with very complex cases and multiple charts, although extremely beneficial in the long-run, can be very time consuming. The part-time care coordinator, assisted by other clinic staff a few hours a week, completes 2-5 new medical summaries and updates 5-10 each week.

Conclusion

Medical summaries have been completed for over 80 of the children with special health care needs seen at the Budge Clinic Pediatric Unit. The feedback received from families and physicians who use the medical summaries on a regular basis has been overwhelmingly positive. One pediatrician stated that he wished all of his patients had a medical summary because it makes reviewing and preparing for each appointment so much more efficient. Feedback from families suggests that the use of medical summaries has eliminated much of the time they previously spent on the phone and in doctors’ offices attempting to coordinate all the details of their children’s medical care. It has also helped them feel more comfortable talking to their pediatrician and care coordinator about non-medical aspects of their children’s lives.