This proposal describes a five-year research training program that will allow Dr. Desai to achieve her long-term goal of becoming an independent physician-scientist dedicated to improving access to comprehensive, coordinated health services for vulnerable children. Dr. Desai's project goal is to improve the quality of care coordination for children with medical complexity (CMC). She will achieve this goal by examining the design and implementation requirements of web-based care plans to meet the care coordination needs of CMC families. She will use a participatory design approach by engaging stakeholders in an iterative design process to build a web-based care plan to help CMC families coordinate their child's care. This proposal builds upon her clinical training in pediatric hospital medicine and her previous quality improvement research related to pediatric hospital-to-home transitions. Dr. Desai's research will be supported by an outstanding group of mentors with expertise in quality improvement research, comparative effectiveness research, health informatics and user-centered design. Her mentors are dedicated to ensuring the success of this project and her career development as an independent clinical investigator.
The first aim of this proposal involves a large observational study to examine factors that impact use of existing care plans among CMC families. Through development and administration of a survey, Dr. Desai will identify design and implementation features of existing care plans that are associated with extent of care plan use among CMC caregivers.
Her second aim will consist of an iterative process of design workshops and rapid prototyping where caregivers, providers and health information technology experts will actively participate in the development of a new web-based care plan prototype. Workshop participants will also create an implementation strategy for the web-based care plan.
The third aim will determine caregiver use and perceptions of care coordination quality of the web-based care plan prototype in comparison to a standard paper-based care plan. This proof-of-concept study will inform the development of a multicenter, pragmatic comparative effectiveness trial of web-based versus paper-based care plans for improving health outcomes in CMC populations. By accomplishing the aims in this proposal, Dr. Desai will address critical gaps in our understanding of how to leverage health information technology to meet the care coordination needs of CMC families. By engaging patients and families in her research, she will design interventions that are consistent with their values, preferences and goals. Ultimately, this proposal will allow Dr. Desai to build a larger research program to investigate system-oriented, patient-centered solutions to improve access to comprehensive, coordinated health services for vulnerable children.

Public Health Relevance

Children with medical complexity (CMC) have extensive hospital and community-based needs requiring effective care coordination across healthcare settings. Patients, caregivers and providers believe multidisciplinary care plans are an important tool for care coordination; however, existing care plans are often not adaptable or accessible in real-time, diminishing their utility in facilitating care coordination. This proposal will engage caregivers and providers in the process of developing and testing a novel web-based care plan for CMC. The results will provide the foundation for future health information technology interventions to improve care coordination for CMC.

National Institute of Health (NIH)
Agency for Healthcare Research and Quality (AHRQ)
Clinical Investigator Award (CIA) (K08)
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HSR Health Care Research Training SS (HCRT)
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Willis, Tamara
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Seattle Children's Hospital
United States
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Desai, Arti D; Jacob-Files, Elizabeth A; Lowry, Sarah J et al. (2018) Development of a Caregiver-Reported Experience Measure for Pediatric Hospital-to-Home Transitions. Health Serv Res 53 Suppl 1:3084-3106
Desai, Arti D; Jacob-Files, Elizabeth A; Wignall, Julia et al. (2018) Caregiver and Health Care Provider Perspectives on Cloud-Based Shared Care Plans for Children With Medical Complexity. Hosp Pediatr 8:394-403
Desai, Arti D; Simon, Tamara D; Leyenaar, JoAnna K et al. (2018) Utilizing Family-Centered Process and Outcome Measures to Assess Hospital-to-Home Transition Quality. Acad Pediatr 18:843-846
Kenyon, Chén C; Gruschow, Siobhan M; Haaland, Wren L et al. (2018) Perceived Access to Outpatient Care and Hospital Reutilization Following Acute Respiratory Illnesses. Acad Pediatr :
Lion, K Casey; Kieran, Kathleen; Desai, Arti et al. (2018) Audio-Recorded Discharge Instructions for Limited English Proficient Parents: A Pilot Study. Jt Comm J Qual Patient Saf :
Lifland, Brooke; Wright, Davene R; Mangione-Smith, Rita et al. (2018) The Impact of an Adolescent Depressive Disorders Clinical Pathway on Healthcare Utilization. Adm Policy Ment Health 45:979-987
Lion, K Casey; Wright, Davene R; Desai, Arti D et al. (2017) Costs of Care for Hospitalized Children Associated With Preferred Language and Insurance Type. Hosp Pediatr 7:70-78