Background/Purpose:

Background:

Because of their considerable medical challenges, adolescents and young adults with pediatric-onset rheumatic diseases are often reliant on the health care system, and any interruption in their care could have serious consequences. Their successful transition of care from pediatric to adult health care systems is crucial for maintaining their health and health-related quality of life. As such, an organized transition of care program is highly important for these patients.

Our objective was to determine components of a transition program from pediatric to adult rheumatology care using survey method.

Methods:

A checklist oriented towards developmentally appropriate goals for transition of care was formulated after review of existing literature and other transition checklists in use for other diseases. An online survey to gather approval for the checklist and resolve transition of care related questions was sent to members of the pediatric rheumatology multidisciplinary staff at Cincinnati Children’s Hospital Medical Center and to its adult rheumatology counterpart at the University of Cincinnati. The participants included attending pediatric and adult rheumatologists on staff, fellows-in-training, nursing staff, physical and occupational therapists, and social worker. All have direct patient contact.

Results:

Response rate was 84% (27 of 32).  The respondents unanimously accepted the self-management transition checklist in terms of content and format.  The checklist contained transition goals that reflected developmental skills of the patients. All respondents want the checklist to be incorporated into the patient’s electronic chart.

From the pediatric rheumatology side, there was no agreement as to (1) the frequency of transition readiness assessment, and (2) at what age should the preparation phase of transition should commence. In addition, majority agreed on the (1) usefulness of scheduled independent visits for adolescent patients to (67%) and (2) necessity of actual doctor visit with an adult rheumatologist prior to the transfer-of-care.

The adult rheumatology staff and fellows unanimously thought that patients should be able to communicate independently to care providers and be informed about their disease. Majority (60%) of the adult rheumatology providers felt that they need more information and education about caring for patients with pediatric onset rheumatic diseases.

Conclusion:  

Agreement was reached on several relevant aspects of a transition of care checklist and program for patients with pediatric onset rheumatic disease. Validation of this checklist is ongoing as are interventional support to meet gaps in the transition process.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/towards-developing-a-rheumatology-specific-transition-of-care-program/