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

Medical advances and new technologies are allowing children with complex medical problems to survive and grow-up living at home with their families. The challenge in meeting their ongoing medical needs is to provide care in both urban and rural communities, and to coordinate the complex array of service systems utilized by these children. Unfortunately, families report services are often uncoordinated, episodic, fragmented, or do not exist in some communities (Kelly et al., 2002). Physicians have reported that they feel uncomfortable caring for children with complex problems, do not have knowledge of resources to meet the children’s unique needs, and lack enough time to deliver and coordinate appropriate care (HRSA, 1997). Adding to the problem of disconnected services is the cumbersome and generally antiquated method of recording medical and health-related information. For children with complex conditions and multiple providers, over time a plethora of fragmented bits of information is generated that is of limited value to decision-makers such as physicians, school staff, and therapists. Parents typically fill the role of central information source. While providers are often dependent on the information they hear from parents, they may be distrustful of its accuracy, placing parents in an awkward position. For families, tracking all of this information is a monumental task with obvious limitations.

Traditional approaches to care are not effective for children with complex, chronic illnesses. Routine, encounter-driven care results in poorer outcomes for children with chronic illnesses because of delays in early detection of health status changes, a failure to adequately train parents in illness self-management skills, inadequate monitoring of treatment effectiveness, and failure to treat child and family psychosocial distress. Common elements of successful interventions include use of explicit treatment plans, attention to the information needs of children and their families, ready access to expert advice, inclusion of psychosocial and behavioral needs, and organized, accessible patient health-related information.

The U Special Kids (USK) Program, a model demonstration project in the Department of Pediatrics at the University of Minnesota, was established in 1996 to provide comprehensive care coordination to children who have complex, multi-system medical problems, are technology dependent, and have frequent hospitalizations. Approximately 200 children throughout Minnesota have been served by the program, which is supported through a combination of program clinical revenues, and funding from the State and from Fairview University Medical Center. Although over 500 children in Minnesota meet the criteria for admission to the program, current funding can only support care coordination for approximately 40 children.

The USK program does not replace primary care, but collaborates with the child’s primary care provider to improve access to and coordination of needed health care services. The core program team includes a pediatrician, pediatric nurse practitioner, nurse coordinator, and clinic coordinator. When a child is initially referred to USK, the nurse coordinator conducts a pre-intake phone call with the family to obtain details regarding the child’s medications, allergies, medical problems, multiple services, providers, and detailed contact information. The nurse practitioner obtains the child’s past medical summaries, which may be from multiple sites, and reviews them for pertinent problems, treatment recommendations, and results of key laboratory and radiologic investigations. From this information a condensed summary of critical information is generated for review by the pediatrician. A team meeting with the child and family is conducted to review the medical summary information, conduct a baseline physical examination, and discuss a plan of care and care coordination needs. The clinic coordinator is responsible for ongoing coordination of care by ensuring that the multiple appointments each child has are scheduled at convenient times for the family, properly sequenced with recommended testing, and coordinated with other visits when possible. The clinic coordinator also acts as a central hub for information flow. 

Many of the regular health care needs of the children we serve are efficiently handled through the child’s primary care clinic. Families have more difficulty finding assistance with specialty care or chronic problems that have not responded to the recommended treatments. Addressing these issues in the primary care clinic may be daunting. The USK program provides telephone management for each child’s multiple problems, particularly for illness symptoms. A primary function of the USK program is telephone triage. When possible, illnesses are addressed over the telephone by a member of the USK team. Addressing illnesses promptly over the phone avoids delays in implementing treatments, potentially avoiding a more severe illness, which can ultimately reduce the number of emergency room visits and hospitalizations. In a review of telephone triage logs for 21 patients, there was an average of 184 calls per month. A significant number of the calls are related to minor acute illnesses and adjustment of treatments and are resolved over the telephone. Reorganization of services so that symptoms can be managed by telephone has obvious benefits for families, in particular for those with transportation difficulties or from rural areas.

The capacity of families to coordinate care is a balance between resources and responsibilities. One of the responsibilities shifted to the USK program is information management. A key function of the program is to condense, organize, and make accessible critical information that is related to care and necessary to effective medical management decisions. The Summary of Critical Information is a tool developed to organize the voluminous information, some of which families are repeatedly queried for (e.g. did you smoke or drink alcohol during your pregnancy, how did your child’s injury occur, and has your child ever been in the hospital?). The summary is stored electronically and hard copies are given to the family; their hospital’s children’s ward, emergency room, and medical records department; the primary care physician; and specialists prior to appointments. Consequently, families do not have to repeat this information for every provider or clinic visit, saving everyone time. It also lifts from the family some of the burden of remembering important events and information.

Another function of the program is to support families and build their confidence as they to learn to manage their child’s care at home. The children served by USK have serious, low-incidence, chronic diseases for which protocols seldom exist. Key to this program function is the development of customized, recurrent-illness plans. These plans have the benefit of earlier identification of problems by the family and health care providers, earlier implementation of effective treatments, reduction in the length of illnesses, and reduction in unplanned hospitalizations.

A preliminary evaluation of the U Special Kids program has demonstrated that its services are associated with lower hospital admissions for acute illnesses, high parent satisfaction with the quality of services and the impact on their child’s health, and provider satisfaction with the time saved because care and information are coordinated. Research is needed to better understand which aspects of care coordination work best for different categories of children and families. For example, in theory, adding a social worker to the USK staff should be beneficial by shifting responsibility for psychosocial issues away from clinical team members, freeing them to spend more time on clinical issues. But enlarging the team may potentially dilute its effectiveness. Many similar issues related to effectiveness need to be researched.

There also needs to be additional attention to who should pay for the care coordination services. To ensure the continuation and replication of programs for children with complex chronic health problems, strategies for funding, particularly integrated funding from private and public insurers, must be developed. There is currently no financial incentive to serve children with complex conditions and high health care costs. However, with targeted care coordination, cost savings may be substantial through reduced utilization of hospital services. State and private health plans save money, but hospitals also benefit when children with complex conditions have shorter lengths of stay. Strategies that integrate health plan and hospital funding streams are needed to overcome the cost-shifting and barriers to efficient and effective care that currently exist. Ultimately, children will be optimally healthy, and care the most cost-effective, if services are appropriate, timely, and of high quality.