Research

The research goals of the Special Needs section involve developing best practices in care coordination for medically complex and fragile Children and Youth with Special Health Care Needs (CYSHCN) and sharing these concepts nationally. The program has published several articles and presented abstracts to a variety of audiences on care coordination practices. In addition to many unfunded studies, the Special Needs section has received grant funding from the Maternal Child Health Bureau to create a care coordination curriculum for families.

 Grants

Training Lay Trainers, 2012-2013

Building on our previous work developing the Bridge to Independence care coordination curriculum, we received a grant from the Healthier Wisconsin Partnership Program in 2012. This project allows us to disseminate the Bridge to Independence curriculum more widely. We recruited parents of children with special health care needs and prepared them to be Lay Trainers, with expertise in Bridge to Independence topics and skills for leading groups. The Lay Trainers are now offering training sessions to other families throughout Wisconsin.

Bridge to Independence, 2008-2011

Bridge to Independence sought to determine whether adding systematic competency-based care coordination education for families to our nationally recognized care coordination program empowers the families to better ensure sustained medical and non-medical care coordination for this population. Bridge to Independence was funded by the Department of Health and Human Services Health Resources and Services Administration’s Maternal and Child Health Bureau.

The new care coordination education was developed using standard curriculum design methods. Its impact was compared with ad hoc education by measuring family satisfaction, quality of life, and autonomy (through self-assessed comfort and competency surveys, SNP use, and length of time to complete care coordination tasks). Sustainability and replicability of this new Tertiary Center / Family / PCP Partnership model will be further evaluated by comparing family and PCP satisfaction with SNP services, child health maintenance and access to care, and SNP return on investment and capacity for the Control and Intervention Groups. Thus, Bridge to Independence address barriers to care coordination and Medical Homes, fills gaps in the literature, and provides groundwork for future multi-center studies designed to identify best practices in care coordination of medically complex and fragile CYSHCN.

For more information about Special Needs Program research projects, contact Sarah Johaningsmeir, the SNP Clinical Research Coordinator, at sjohanin@mcw.edu.

 Publications

Gordon, J. B., Colby, H. H., Bartelt, T., Jablonski, D., Krauthoefer, M. L., & Havens, P. (2007 ). A Tertiary Care-Primary Care Partnership Model for Medically Complex and Fragile Children and Youth with Special Health Care Needs.  Archives of Pediatric Adolescent Medicine, 161(10).

Calkins, C. M., Brown, S. P., & Oldham, K. T. (2008). Training Pediatric Surgeons to Care for Children with Special Health Care Needs. Journal of Pediatric Rehabilitation Medicine:  An Interdisciplinary Approach, 75-80.

Conceição, S. C.O., Colby, H., Juhlmann, A. and Johaningsmeir, S. (2011), Curriculum design in health education. New Directions for Adult and Continuing Education, 2011: 17–27. doi: 10.1002/ace.407.

 Abstracts and Presentations

Arseneau, E., Kryfke, R., Colby, H., Krauthoefer, M., Jablonski, D., Wachowiak, C., Bartelt, T., Hansen, S., Karkos, J., Gordon, J.  (2009). Care Coordination Use By Medically Complex and Fragile Children.  Poster presented at the Pediatric Academic Societies.

Colby, H., Jablonski, D., Krautheofer, M., Wachowiak, C., Juhlmann, A., Karvelas, A., Kryfke, R., Scanlon, M., & Gordon, J.  (2009).  Family Care Coordination Survey.  Poster presented at the American Academy of Pediatrics national conference.

Colby, H., Bartelt, T., Jablonski, D., Krauthoefer, M., Kryfke, R., Kuhn, E., et al. (2007). Intensity Tool for Care Coordination: Validity and Reliability Testing. Poster presented at the American Academy of Pediatrics.

Gordon, J., Cowan, R., Smocke, R., Bartels, F., & Malin, T. (2006). Funding Care Coordination by Tertiary Care Physicians.  Poster presented at the Pediatric Academic Societies.

Gordon, J., Humphrey, J., Bartelt, T., Colby, H., Jablonski, D., Krauthoefer, M., et al. (2005). A Tertiary Center Special Needs Program Decreases Hospitalization of Complex, Medically Fragile, Children with Special Healthcare Needs (CSHCN). Poster presented at the Pediatric Academic Societies.

Gordon, J., Stille, C., Colby, H., Vogel, L., & Marks, J. (2007). Creating Partnerships Between Primary Care Medical Homes and Specialty Hospitals. Paper presented at the National Initiative for Children's Healthcare Quality.

Gordon, J., Kryfke, R., Hansen, S., & Karkos, J.  (2009).  Physician Activities and Reimbursement in a Tertiary Center Care Coordination Program.  Poster presented at the Pediatric Academic Societies.

Hansen, S., Kryfke, R., & Juhlmann, A.  (2009). TEAM: A Medical Home Training Program.  Poster presented at the Association of Maternal and Child Health Programs.

Juhlmann, A., Anderson, Y., Nocton, J., Klingbeil, F., & Gordon, J. (2007). Project TEAM: A Children and Youth with Special Health Care Needs (CYSHCN) Training Program for Pediatric Residents. Poster presented at the Pediatric Academic Societies.

Karkos, J. B., Kryfke, R., & Brown, S. (2008). Tertiary Care-Primary Care Medical Home for Children with Medical Fragility and Complexity. Poster presented at the American Academy of Cerebral Palsy and Developmental Medicine.

Klingbeil, F. T., Juhlmann, A. K., Anderson, Y. E., & Gordon, J. B. (2004). A New Children with Special Health Care Needs (CSHCN) Rotation for Third Year Pediatric (PL3) Residents. Paper presented at the Pediatric Academic Societies.

Krauthoefer, M., Bartelt, T., Colby, H., Jablonski, D., & Gordon, J. (2007). Tertiary Center Nurse Care Coordination for Complex, Medically Fragile Children and Youth with Special Health Care Needs (CYSHCN). Presentation at the Pediatric Academic Societies.

Krautheofer, M., Kryfke, R., Colby, H., Jablonski, D., Wachowiak, C. Karvelas, A., Juhlmann, A., & Gordon, J. (2009).  Factors Influencing Health Care Satisfaction in Families of Medically Complex and Fragile Children.  Poster presented at the American Academy of Pediatrics national conference.

Kryfke, R., Colby, H., & Gordon, J. (2007). Assessing System Needs for Transitioning Youth with Special Health Care Needs (YSHCN) from Pediatric to Adult Care. Poster presented at the American Academy of Pediatrics.

Wachowiak, C., Kryfke, R., Colby, H., Krauthoedfer, M., Jablonski, D., Karvelas, A., Juhlmann, A., Nanchal, N., & Gordon, J. (2009).  Improving Family and Provider Satisfaction of a Care Coordination Program for Medically Complex and Fragile Children with Chronic Conditions. Poster presented at the American Academy of Pediatrics national conference.

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