230. Building Bridges to Adult Medical Homes: Creating a Community Coalition to Identify Obstacles and Provide Solutions for Successful Transition in a High-Risk Neighborhood

Abstract

PurposeCreate a community coalition to improve transition from the Pediatric to the Adult Medical Home for Adolescents with Special Health Care Needs (SHCN) living in the Park Heights community of Baltimore, MD. Half of this predominantly African American community lives below 200% of the Federal Poverty level. Approximately 20% of the Pediatric population using the neighborhood's largest Federally Qualified Health Center is between 16 and 21 years old, and a significant proportion of these adolescents have SHCN. The program was created because patients, families and clinicians report that the transition to adult care is inadequate. Factors related to neighborhood poverty and social stress are likely to play a role. Specific obstacles must be identified in order to improve transition.MethodsThere were three major components of the program serving the population described above: 1. identifying community partners/coalition building; 2. Provider needs assessment; 3. Patient/family needs assessment. A mixed methods approach was used, including surveying key stakeholders, and creating focus groups composed of these stakeholders (community organizations, adolescents/young adults, parents/caretakers, clinicians, disease specific advocacy organizations). Support: American Academy of Pediatrics Community Access to Child Health grant.ResultsQuantitative clinician needs assessment revealed that internists (n=30) are uncomfortable with the management of many “grown up Pediatric diseases” including ADHD (35%), Cerebral Palsy (76%), congenital heart disease (53%), cystic fibrosis (35%), Spina bifida (75%). Community partners were identified by consultation with community leaders, school officials, community outreach/population health experts from the hospital serving this community and from clinical generalists and specialists. Four focus groups have been conducted thus far, including: 1. adults with epilepsy (10 participants), 2. youth with HIV (5 participants), 3. Parents of youth with autism (12 participants).4. Pediatric Hematology-Oncology clinicians (5 participants). Participants identified the following themes that were obstacles to successful transition: Deficits in clinician knowledge base; inadequate supply of appropriately trained clinicians; inadequate supply of appropriately trained therapists (especially for young adults with autism); patient reluctance to leave pediatric clinicians; lack of health insurance coverage; lack of case management for transitioning patients; lack of a medical “ombudsman” to assist in transition of patients; cultural opposition to optimal utilization of health care resources. Recruitment of patients/families for focus groups, especially via recruitment through medical offices, was difficult due to transportation and time issues. Additional problems included difficulties making inroads into the community and creating partnerships with local schools.ConclusionsA multi-faceted approach-reaching out to youth, parents, caretakers, disease specific advocacy organizations, and community organizations, as well as medical personnel-is required to facilitate the transition of SHCN teenagers/young adults in a high risk, medically underserved community.Recruitment of patients/families for focus groups is challenging. Significant time must be spent in the community to elicit concerns regarding transition to adult care. Future plans will include: creation of a web site for improved communication between stakeholder groups; using off campus community sites as meeting locales for focus groups; coordinating our efforts with the Maryland Department of Health and Mental Hygiene and the Baltimore City Department of Education.Sources of Support: PurposeCreate a community coalition to improve transition from the Pediatric to the Adult Medical Home for Adolescents with Special Health Care Needs (SHCN) living in the Park Heights community of Baltimore, MD. Half of this predominantly African American community lives below 200% of the Federal Poverty level. Approximately 20% of the Pediatric population using the neighborhood's largest Federally Qualified Health Center is between 16 and 21 years old, and a significant proportion of these adolescents have SHCN. The program was created because patients, families and clinicians report that the transition to adult care is inadequate. Factors related to neighborhood poverty and social stress are likely to play a role. Specific obstacles must be identified in order to improve transition. Create a community coalition to improve transition from the Pediatric to the Adult Medical Home for Adolescents with Special Health Care Needs (SHCN) living in the Park Heights community of Baltimore, MD. Half of this predominantly African American community lives below 200% of the Federal Poverty level. Approximately 20% of the Pediatric population using the neighborhood's largest Federally Qualified Health Center is between 16 and 21 years old, and a significant proportion of these adolescents have SHCN. The program was created because patients, families and clinicians report that the transition to adult care is inadequate. Factors related to neighborhood poverty and social stress are likely to play a role. Specific obstacles must be identified in order to improve transition. MethodsThere were three major components of the program serving the population described above: 1. identifying community partners/coalition building; 2. Provider needs assessment; 3. Patient/family needs assessment. A mixed methods approach was used, including surveying key stakeholders, and creating focus groups composed of these stakeholders (community organizations, adolescents/young adults, parents/caretakers, clinicians, disease specific advocacy organizations). Support: American Academy of Pediatrics Community Access to Child Health grant. There were three major components of the program serving the population described above: 1. identifying community partners/coalition building; 2. Provider needs assessment; 3. Patient/family needs assessment. A mixed methods approach was used, including surveying key stakeholders, and creating focus groups composed of these stakeholders (community organizations, adolescents/young adults, parents/caretakers, clinicians, disease specific advocacy organizations). Support: American Academy of Pediatrics Community Access to Child Health grant. ResultsQuantitative clinician needs assessment revealed that internists (n=30) are uncomfortable with the management of many “grown up Pediatric diseases” including ADHD (35%), Cerebral Palsy (76%), congenital heart disease (53%), cystic fibrosis (35%), Spina bifida (75%). Community partners were identified by consultation with community leaders, school officials, community outreach/population health experts from the hospital serving this community and from clinical generalists and specialists. Four focus groups have been conducted thus far, including: 1. adults with epilepsy (10 participants), 2. youth with HIV (5 participants), 3. Parents of youth with autism (12 participants).4. Pediatric Hematology-Oncology clinicians (5 participants). Participants identified the following themes that were obstacles to successful transition: Deficits in clinician knowledge base; inadequate supply of appropriately trained clinicians; inadequate supply of appropriately trained therapists (especially for young adults with autism); patient reluctance to leave pediatric clinicians; lack of health insurance coverage; lack of case management for transitioning patients; lack of a medical “ombudsman” to assist in transition of patients; cultural opposition to optimal utilization of health care resources. Recruitment of patients/families for focus groups, especially via recruitment through medical offices, was difficult due to transportation and time issues. Additional problems included difficulties making inroads into the community and creating partnerships with local schools. Quantitative clinician needs assessment revealed that internists (n=30) are uncomfortable with the management of many “grown up Pediatric diseases” including ADHD (35%), Cerebral Palsy (76%), congenital heart disease (53%), cystic fibrosis (35%), Spina bifida (75%). Community partners were identified by consultation with community leaders, school officials, community outreach/population health experts from the hospital serving this community and from clinical generalists and specialists. Four focus groups have been conducted thus far, including: 1. adults with epilepsy (10 participants), 2. youth with HIV (5 participants), 3. Parents of youth with autism (12 participants).4. Pediatric Hematology-Oncology clinicians (5 participants). Participants identified the following themes that were obstacles to successful transition: Deficits in clinician knowledge base; inadequate supply of appropriately trained clinicians; inadequate supply of appropriately trained therapists (especially for young adults with autism); patient reluctance to leave pediatric clinicians; lack of health insurance coverage; lack of case management for transitioning patients; lack of a medical “ombudsman” to assist in transition of patients; cultural opposition to optimal utilization of health care resources. Recruitment of patients/families for focus groups, especially via recruitment through medical offices, was difficult due to transportation and time issues. Additional problems included difficulties making inroads into the community and creating partnerships with local schools. ConclusionsA multi-faceted approach-reaching out to youth, parents, caretakers, disease specific advocacy organizations, and community organizations, as well as medical personnel-is required to facilitate the transition of SHCN teenagers/young adults in a high risk, medically underserved community.Recruitment of patients/families for focus groups is challenging. Significant time must be spent in the community to elicit concerns regarding transition to adult care. Future plans will include: creation of a web site for improved communication between stakeholder groups; using off campus community sites as meeting locales for focus groups; coordinating our efforts with the Maryland Department of Health and Mental Hygiene and the Baltimore City Department of Education.Sources of Support: A multi-faceted approach-reaching out to youth, parents, caretakers, disease specific advocacy organizations, and community organizations, as well as medical personnel-is required to facilitate the transition of SHCN teenagers/young adults in a high risk, medically underserved community.Recruitment of patients/families for focus groups is challenging. Significant time must be spent in the community to elicit concerns regarding transition to adult care. Future plans will include: creation of a web site for improved communication between stakeholder groups; using off campus community sites as meeting locales for focus groups; coordinating our efforts with the Maryland Department of Health and Mental Hygiene and the Baltimore City Department of Education.