SummaryA resident education clinic affiliated with the Mattel Children's Hospital (part of the Ronald Reagan UCLA Medical Center) has implemented a medical home model for children with complex chronic conditions. The program, based on American Academy of Pediatrics guidelines, includes multiple components: a resident with primary responsibility for overseeing the child's care; procedures for ensuring continuity of care when the treating resident graduates; a bilingual family liaison to coordinate and facilitate access to care; longer-than-average intake and followup visits; a family notebook that contains all relevant, up-to-date medical information on the child; monthly meetings to educate and solicit input from families; and a special curriculum designed to educate residents about the medical home approach. The program reduced emergency department visits by more than 50 percent and generated high levels of satisfaction among participating families. It also led to declines in inpatient utilization and increases in outpatient and urgent care visits, although these findings were not statistically significant.Moderate: The evidence consists of pre- and post-implementation comparisons of ED visits; inpatient admissions, days, and average LOS; and outpatient and urgent care visits among 30 children more than 1 year old enrolled in the pilot study, along with a comparison of patient/family satisfaction among program participants to that of families who have children with special health needs not served by a medical home.
Developing OrganizationsMattel Children's Hospital
The program was implemented by a resident education clinic affiliated with Mattel Children's Hospital, part of the Ronald Reagan UCLA Medical Center.
Use By Other OrganizationsA directory of programs that deal with various aspects of the care of children with complex disease can be obtained from Agrawal Rishi, MD, of Children's Memorial Hospital in Chicago; his e-mail address is firstname.lastname@example.org.
Date First Implemented2003
Patient PopulationThe program serves the families of children with complex chronic conditions who see two or more pediatric subspecialists on a regular basis, with most participants seeing at least four specialists. These children tend to be in the top 5 percent of pediatric patients in terms of medical complexity, and hence consume a disproportionate share (roughly 20 percent) of all health care resources used by pediatric patients. Most families served by the program speak Spanish and live in challenging socioeconomic circumstances.Vulnerable Populations > Children; Medically or socially complex
Problem AddressedFamilies of children with complex chronic conditions, particularly those from disadvantaged groups, often face significant challenges in navigating the health care system and in adhering to complex care and medication regimens. As a result, these families frequently come to the high-cost emergency department (ED) for care, either because they do not know where else to go or because their child's condition has deteriorated due to a lack of ongoing care.
- Significant barriers in accessing care: The families of children with special health care needs, particularly those who are ethnic minorities, have low incomes, or do not speak English, frequently face challenges in navigating the health care system and in following the complex care and medication regimens needed by their children.1
- Leading to higher ED utilization: Parents of children with special health care needs who face additional stresses, such as language, cultural, and racial barriers, are significantly more likely to bring their child to the ED than are parents of similar children who do not have to deal with these additional stresses.1
Description of the Innovative ActivityA resident education clinic affiliated with a children's hospital implemented a medical home model for children with complex chronic conditions based on American Academy of Pediatrics (AAP) guidelines that includes multiple components: continuity of care from one resident; longer-than-average intake and followup visits; a bilingual family liaison to help coordinate and facilitate access to care; a family notebook that contains all relevant, up-to-date medical information on the child; monthly meetings to educate and solicit input from families; and a special curriculum designed to educate residents about, and make them more comfortable with, the medical home concept. More details on each of the key components of this medical home model:
- Care from single resident, with smooth transitions at graduation: For the most part, medical home patients receive care from the same resident at every scheduled clinic appointment, except for urgent clinic visits and occasions when the resident is unavailable due to vacation, work hour rules, or scheduled time at another hospital. During the initial pilot study (which included 40 patients), each resident cared for between one and six patients. To ensure a smooth transition, residents about to graduate were initially asked to choose a first-year intern to take over the care of each of their patients, and to have that intern meet the patient and family before the resident left the program. Residents now begin the transition process earlier. Beginning in their third year, each resident develops a formal package about one medical home patient for each incoming intern, with the intern becoming responsible for that patient on the first day of his or her internship. This approach enhances continuity, giving patients and families an additional year with their treating resident, and allows new interns to become familiar with and excited about the medical home program.
- Long intake visits: Each patient receives an initial 60-minute comprehensive clinical and social evaluation conducted by the resident, attending pediatrician, family liaison (see bullet below for more details), and family members. During this session, which is three times longer than the typical primary care visit offered at the clinic, the following occurs:
- Medical history and examination: The team conducts a medical history (including reviewing any medical records from care received at Mattel Children's Hospital and its affiliated specialty clinics), physical examination, and any needed laboratory or blood tests.
- Creation of "to-do" list: The team works with the patient and family to develop a list of the patient's medical and social problems, and to create a "to-do" list of needed medical and nonmedical interventions. To the extent possible, the clinical team attempts to understand any socioeconomic challenges that may be facing the family, such as those related to school, transportation, and insurance coverage. Often, however, the ability to identify such barriers during the first visit is limited because trust has not yet been established between the family and the care team.
- Distribution of notebook to store medical information: At the end of the visit, the family receives an All About Me notebook that serves as a single place to store all medical information (see bullet below for more details on this notebook).
- Bilingual family liaison: A Spanish-speaking family liaison serves as the primary contact and as a conduit of information for patients/families, working with them to overcome barriers to accessing needed care and services (e.g., by helping with insurance issues, providing basic triage services). The liaison typically provides intensive support during the first few months and then less intensive support thereafter, as outlined below:
- Initial period of intense support: During the first 2 to 6 months, the liaison gets to know the patient and his or her family, and helps ensure that the patient and family receive all needed interventions on the "to-do" list. To that end, the liaison helps the family to schedule any needed medical appointments (e.g., with subspecialists) at a time convenient for them. For example, for a patient who needs to see three different subspecialists, the liaison can work with the family to find a single day when all appointments can be scheduled, thus reducing the risk that transportation and other issues will become a barrier. (The liaison has electronic access to the scheduling systems for all subspecialty clinics affiliated with Mattel Children's Hospital; most medical home patients receive specialty care at these clinics.) The liaison calls to remind the family about such appointments, arranges for transportation if necessary, and, whenever possible, attends the visit with the family to provide translation services and facilitate communication and understanding between patient/family and provider. If unable to attend, the liaison follows up with the patient/family promptly after the appointment(s). During this time period, the liaison also works with the family to help secure insurance coverage if necessary, and to link them to any needed social or community-based services.
- Less support over time, as dictated by needs: Over time, the family typically develops a close, trusting relationship with the liaison, who, in turn, begins to teach and encourage family members to navigate the system on their own. As this process evolves, families typically begin to feel more knowledgeable, empowered and comfortable, and hence better able to handle issues and problems. As a result, the intensity of the liaison–family relationship generally lessens over time.
- As-needed telephone access: Patients or family members can call the medical home phone line during normal business hours if they need the liaison; after hours, an on-call resident takes the call, deals with the issue if it is time-sensitive, and alerts the family liaison about the call so that he or she can follow up with the family.
- Long followup visits: Each medical home patient receives 40-minute followup visits, twice the length of a standard visit. The longer visit allows the resident to provide needed medical services and to follow up on the to-do list to make sure that needed services have been received and that complex medical and social issues have been (or are being) addressed. The goal is to provide chronic care management for these complex patients, in addition to primary care services (e.g., vaccinations, screenings, management of acute episodes).
- Family notebook with up-to-date information: Each family has an All About Me binder, which includes copies of all pertinent medical records, names and contact information for each subspecialist caring for the patient, a medication list, laboratory test results, medical notes, a place to store business and appointment cards from physicians, and information about school and community activities and resources. The family liaison works with the family to update the binder as needed.
- Monthly meetings with families to provide education, get input: Each medical home family can become part of the Family Advisory Committee, which meets on a monthly basis at the clinic. Meetings alternate between educational sessions where outside speakers provide information related to the program (e.g., how to enroll in Medicaid or apply for disability insurance, how to access school- and other community-based resources) and input sessions where families can offer their impressions of the program and provide suggestions for how to improve it. During the 3-year pilot study, 10 to 15 families typically attended each session (out of 40 families enrolled).
- Medical home curriculum for residents: As part of its resident education services, the clinic recently began teaching a specialized curriculum designed to instruct residents on how to practice in a medical home and to get them more engaged in and enthusiastic about this model of care delivery. Under this program, added in response to requests from residents to learn more about medical homes, residents attend 30- to 40-minute educational sessions where they learn about various aspects of a medical home for children with special health care needs, including the system of care currently serving such patients, how to be a medical home provider, how to work with families, and how to facilitate access to, organize, and coordinate services for these patients. Residents attend these bimonthly clinic-based sessions before conducting patient visits, which they typically do for 3 hours in the afternoon. Going forward, this curriculum will be expanded under the direction of a five-person medical education task force. (See the Planning and Development Process section for more details.)
Context of the InnovationThe Mattel Children's Hospital, part of the Ronald Reagan UCLA Medical Center, provides a full spectrum of primary and specialty care for infants, children, and adolescents. The hospital, which serves more than 6,000 inpatients and 100,000 outpatients each year, is also engaged in pediatric research and teaching. The medical home program was implemented within the Pediatric Continuity Clinic, a resident education clinic operated by the department of pediatrics. The impetus for the program came in 2001, when Thomas S. Klitzner, MD, a pediatric cardiologist, was asked to write a prescription for formula for an infant who faced multiple, complex medical conditions and came from a Spanish-speaking family facing socioeconomic challenges. While reviewing the large amount of information provided about the patient, Dr. Klitzner repeatedly saw the name of an individual resident in the patient's notes and orders. To help him better understand the patient's situation, Dr. Klitzner called the resident, who gave him a brief but holistic and insightful summary, and provided him with a well-considered recommendation as to the appropriate formula to prescribe. Realizing that this resident seemed to have the most complete picture of this complex patient's situation, Dr. Klitzner began looking for ways to harness this type of knowledge so as to better serve complex pediatric patients and their families. In 2002, Dr. Klitzner began learning about the medical home concept, including the AAP's definition and guidelines for a medical home, which were published that year. Feeling that the resident clinic offered an ideal place in which to create the type of medical home AAP envisioned, the clinic's office manager (a coauthor of the AAP paper) approached Dr. Klitzner, encouraging him to apply for an AAP Community Access to Child Health (CATCH) medical home planning grant to support development of such a program. In 2011, The Pediatric Medical Home Program at UCLA has been recognized as a significant medical delivery system innovation by the State of California’s 1115 Medicaid Waiver “Bridge to Reform.”
ResultsThe program reduced ED visits by more than 50 percent and generated high levels of satisfaction among participating families. It also led to declines in inpatient admissions, inpatient days, and average length of stay (LOS), and to increases in outpatient and urgent care visits, although these findings were not statistically significant.
Moderate: The evidence consists of pre- and post-implementation comparisons of ED visits; inpatient admissions, days, and average LOS; and outpatient and urgent care visits among 30 children more than 1 year old enrolled in the pilot study, along with a comparison of patient/family satisfaction among program participants to that of families who have children with special health needs not served by a medical home.
- Fewer ED visits: Among the 30 patients enrolled in the 3-year pilot program, 13 patients visited the ED a total of 34 times in the year before program enrollment, compared to just 10 patients visiting the ED a total of 15 times in the year after enrollment. These findings were statistically significant.2 (This analysis included only those more than 1 year old so as to enable collection of data for a full year before enrollment.)
- Highly satisfied families: For 90 percent of the measures included on the Medical Home Family Index (a survey designed to gauge patient/family satisfaction), the average score for families participating in the pilot program was above that for the typical family with a child who has special health care needs. Spanish-speaking families were equally or slightly more satisfied than English-speaking families.3
- Less hospital, more outpatient/urgent care use: Among the same 30 patients included in the ED utilization analysis described above, inpatient admissions, days, and average LOS also fell, while outpatient admissions did not change and urgent care visits increased. Although these findings were not statistically significant, anecdotal reports from parents suggest that the program may have empowered families to use telephone consultations, clinic appointments, and urgent care visits as alternatives to the ED.2
- Impact on residents to be studied: A future analysis will evaluate the degree to which the program affects residents' knowledge, comfort levels, and skills related to providing medical home services to complex pediatric patients.
Planning and Development ProcessThe program began small and evolved over time, as outlined below:
- Forming executive committee, securing planning grant: Dr. Klitzner set up a Medical Home Executive Committee that consisted of a small group of individuals involved in the grant process, including himself, the office manager, and the individual who would later serve as the first family liaison. The clinic applied for and received an AAP CATCH grant to support program planning.
- Creating larger committee to develop program: After securing the grant, the executive committee created a larger planning committee comprised of roughly 25 individuals, including clinical nurse specialists, social workers, residents and chief residents, subspecialists, and representatives from community-based organizations that serve the families of children with special health care needs. This committee met on a biweekly basis over a period of several months to identify and prioritize the elements of the medical home program (using AAP recommendations as a guide), evaluate their feasibility, and develop preliminary budgets.
- Securing funds to operate program: After attending a planning committee meeting, the director of the department of community pediatrics at AAP encouraged program developers to apply for a Healthy Tomorrows Partnership for Children grant (from the Health Resources and Services Administration at the U.S. Department of Health and Human Services, with technical assistance provided by AAP). The clinic applied for and received a 5-year grant to support program operations.
- Launching initial pilot study: Using the grant funding, program developers hired the first family liaison and commenced a pilot study that enrolled 43 patients between September 2003 and December 2004.
- Training residents on medical home: Residents received an orientation to the medical home as part of their intern orientation process. The remainder of training occurred "on the job" as residents saw medical home patients.
- Securing additional grant money to hire part-time pediatrician: Because the Healthy Tomorrows grant required the securing of two-to-one matching funds, program developers approached the director of a local foundation (the Skirball Foundation) to explain the program and request financial support. The foundation agreed, and program leaders used these additional funds to hire a part-time physician to serve as the "medical home" pediatrician, with the primary responsibility of assisting residents and family liaisons with the initial intake and followup appointments.
- Formalizing and expanding the program: Program leaders expected the program to end after grant funding ran out. However, the residents proactively approached Dr. Klitzner, expressing their unqualified support for continuation of the program, which they felt was a valuable part of their education process and critical to providing high-quality care to patients and families. Working with local foundations and the department of pediatrics, the clinic secured enough additional funding to support continued operations and to hire a second family liaison and a full-time pediatrician (effective July 1, 2010). At present, the program serves 110 patients and their families, with the goal of enrolling all 400 to 500 clinic patients who could benefit from program services within the next few years.
- Forming task force to expand medical home curriculum: In response to resident enthusiasm, program leaders created a five-member task force to refine and expand the outpatient medical home education curriculum, including changes designed to accommodate the likely attention that will come to medical homes as the result of health care reform legislation. As part of this effort, program leaders formed an inpatient education team, under the direction of an assistant medical education director, to develop an inpatient resident education curriculum to complement outpatient education in the medical home.
Resources Used and Skills Needed
- Staffing: Liaisons typically should have college degrees but do not need advanced training in medicine or the medical home, as their roles are primarily administrative in nature, focusing on facilitating access to and coordinating care. At the Pediatric Continuity Clinic, all liaisons to date have had prior experience in medically oriented organizations and/or organizations that provide services to children. During the pilot study, one family liaison served all 43 patients/families enrolled in the program; this individual spoke English and Spanish and had expertise in care coordination for children with special needs. Based on their experience in the past year, one bilingual family liaison can carry a caseload of approximately 100 complex, fragile patients. Residents and attending pediatricians participated in the pilot study as part of their regular duties. At present, dedicated program staff includes two full-time liaisons and a part-time medical home pediatrician serving 110 patients and families. As of July 1, 2010, the program will employ a full-time medical home pediatrician who will divide time between program oversight, working with residents and liaisons in conjunction with patient care, and developing and executing the medical home education curriculum for residents and interns.
- Costs: Operating costs related to the program totaled approximately $45,000 during the year-long pilot study; major expenses included compensation for the family liaison and program/educational materials (e.g., the notebooks). At present, the program budget is $150,000 per year, which covers the cost of the half-time medical home pediatrician, two family liaisons, hosting of the parent advisory group, supplies, and some travel.
Funding SourcesAmerican Academy of Pediatrics; Health Resources and Services Administration; Skirball Foundation
The aforementioned AAP CATCH grant of $6,000 funded program planning, while the previously described 5-year, $50,000-a-year Healthy Tomorrows grant from the Health Resources and Services Administration (grant #H17MC00406) covered operating costs during the pilot study. An additional $100,000 a year in funding from the Skirball Foundation allowed for program expansion. At present, part of the program's budget comes from the department of pediatrics; funding from a larger group of local foundations should keep the program operating for the next several years. Medi-Cal (as California's Medicaid program is known) provides minimal reimbursement (30 to 35 percent of Medicare rates) for evaluation and management services provided under the program. Changes included in the recently enacted national health reform legislation, combined with potential changes in state-level reimbursement, are likely to provide for increased reimbursement for program services going forward, including for chart reviews and telephone consultations. Starting in July 2011, the State of California's 1115 Medicaid Waiver "Bridge to Reform" will provide funding for program expansion.
Tools and Other ResourcesMore information on the Center for Medical Home Improvement's Medical Home Family Index can be found at: http://www.medicalhomeimprovement.org/pdf/FAQ_Measurementrev11-09.pdf (If you don't have the software to open this PDF, download free Adobe Acrobat Reader® software .).
AAP's National Center for Medical Home Implementation offers a variety of tools to assist in implementing a medical home for children; more information is available at: http://www.medicalhomeinfo.org.
Getting Started with This Innovation
- Involve community-based organizations in planning: Schools, physical therapy programs, regional development programs, and other organizations frequently serve children with special health care needs and their families, and hence understand their needs and the barriers they face. Representatives from these organizations should be invited to participate in program planning.
- Take incremental approach, improve over time: Serving medically complex children can be quite challenging. The best approach is to start small with a few changes and/or pilot tests, measure their impact, and refine and expand over time.
- Be methodical and set up systems to measure impact: Long-term success, including the ability to expand the program to others who need it, depends on being able to prove that the approach works. To that end, consider setting up strict criteria for who can initially enroll and maintain that criteria throughout the initial pilot, thus ensuring that analyses will be sound. For example, the resident education clinic ended up turning away interested families who did not meet inclusion criteria during the pilot study, as they wanted to make sure that data could be collected and analyzed appropriately.
Sustaining This Innovation
- Establish relationships with would-be funders: Until payment systems adequately reimburse for services provided by medical home programs, outside funding is often needed to support program operations. The UCLA program now has relationships with roughly 30 foundations that will likely provide adequate funding to keep the program operational for the next several years.
- Lobby for third-party reimbursement: While health care reform may well result in increased reimbursement for medical home services, would-be adopters should consider approaching the leaders of public and private insurers to educate them on the benefits of this type of program, including its potential to reduce ED and inpatient usage, thus generating significant cost savings. UCLA hopes to work with payers to develop new payment systems that allow the clinic and payers to share in such savings.
- Maintain relationships with community-based organizations: Periodically meet with representatives of community-based organizations that serve the target population to solicit their input, and consider such input when refining the program.
- Solicit and consider input from those being served: Those served by the program often have good advice on how to improve the services offered. To encourage such input, set up a mechanism, such as the Family Advisory Committee, to allow patients, parents, and other family members to offer their opinions in a welcoming environment.
Use By Other OrganizationsA directory of programs that deal with various aspects of the care of children with complex disease can be obtained from Agrawal Rishi, MD, of Children's Memorial Hospital in Chicago; his e-mail address is email@example.com.
- Consider serving other populations: The basic elements of this program, which were implemented for a medically complex, socioeconomically disadvantaged patient population, could be applied to other challenging populations, including working-age adults and seniors with multiple chronic conditions, particularly those facing socioeconomic or ethnic/racial barriers to accessing care.
Contact the InnovatorThomas S. Klitzner, MD, PhD
Jack H. Skirball Professor of Pediatrics
Mattel Children's Hospital UCLA
10833 Le Conte Ave, B2-427MDCC
Los Angeles, CA 90095-1743
Phone: (310) 825-5296
Innovator DisclosuresDr. Klitzner reported having no financial interests or business/professional affiliations relevant to the work described in this profile other than the funders listed in the Funding Sources section.
References/Related ArticlesKlitzner TS, Rabbitt LA, Chang RK. Benefits of care coordination for children with complex disease: a pilot medical home project in a resident teaching clinic. J Pediatrics. [PubMed] Epub 2010 Mar 10.
Novel "Medical Home" Program for Pediatric Patients, Families Cuts ER Visits in Half. Available at: http://www.medicalnewstoday.com/articles/182529.php
More information on the program can be found at: http://www.uclahealth.org/body_mattel.cfm?id=1434
Raphael JL, Zhang Y, Liu H, et al. Parenting stress in US families: implications for paediatric healthcare utilization. Child Care Health Dev. 2010;36(2):216-24. [PubMed]
Epub 2009 Dec 29.
Klitzner TS, Rabbitt LA, Chang RK. Benefits of care coordination for children with complex disease: a pilot medical home project in a resident teaching clinic. J Pediatrics. 2010;156(6):1006-10. [PubMed]
Epub 2010 Mar 10.
Hamilton LJ, Lerner CF, Presson AP, et al. Evaluating effects of a medical home program for children with special health care needs on parental perceptions of care in an ethnically diverse patient population. Matern Child Health J. [PubMed]
Epub 2012 May 9.
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Original publication: June 09, 2010.
Original publication indicates the date the profile was first posted to the Innovations Exchange.
Last updated: June 05, 2013.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.
Date verified by innovator: May 13, 2013.
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