Transition, transfer of care, and program guidelines
| Position . | NASCC transition road map statement . | All centers (N = 69), % . |
|---|---|---|
| Standard | Each comprehensive adult sickle cell center should have a policy in place for receiving transitioning pediatric patients in their clinical workflow. | 94.2 |
| Standard | All comprehensive pediatric and adult sickle cell centers should track TOC. | 98.6 |
| Standard | A successful transfer of care is defined as 2 visits with a comprehensive adult sickle cell program in the first year. Visits can be in person or via telemedicine. | 78.3 |
| Standard | A successful integration to adult care is defined as completion of at least 50% of annual outpatient visits in the 5-year period after transfer of care and the patient identification of the adult center as their sickle cell medical home. | 72.5 |
| Recommendation | Referring comprehensive pediatric and receiving adult sickle cell providers (preferably entire sickle cell care teams and CBO liaison when feasible) should have joint meetings to discuss patients who are nearing transition. | 89.9 |
| Recommendation | Joint pediatric to adult provider TOC visits should be a billable service for both clinicians. | 91.3 |
| Recommendation | Every comprehensive pediatric sickle program should have a “universal care plan” document in the EHR that incorporates essential items of TOC to keep track of services relevant for a pediatric/adult/life span program. | 88.4 |
| Recommendation | A pediatric summary EHR TOC “handoff” note should be utilized to facilitate pediatric TOC between pediatric and adult care providers (this note should be updated at each pediatric comprehensive visit in preparation for patient TOC). | 95.7 |
| Recommendation | The receiving adult sickle cell care team/provider should provide an “intake document”/progress report, after initial adult visit has been completed to their respective referring clinician (pediatric team and primary care clinician). | 89.9 |
| Recommendation | All comprehensive pediatric and adult sickle cell centers should have a transition coordinator or program designee who follows patients from pediatric care into adult care until successful transition. | 87.0 |
| Recommendation | The time gap between the last pediatric clinic visits and first adult sickle cell care visit to establish care should be <3 months. | 85.5 |
| Recommendation | A formal system to identify transitioning AYA patients who have not had an initial adult visit within 6 months of last pediatric hematology visit should be established at comprehensive pediatric and adult sickle cell centers. | 92.8 |
| Recommendation | The initial adult visit to a new institution should include communication between blood banks about RBC genotyping/phenotyping and transfusion history. | 92.8 |
| Position . | NASCC transition road map statement . | All centers (N = 69), % . |
|---|---|---|
| Standard | Each comprehensive adult sickle cell center should have a policy in place for receiving transitioning pediatric patients in their clinical workflow. | 94.2 |
| Standard | All comprehensive pediatric and adult sickle cell centers should track TOC. | 98.6 |
| Standard | A successful transfer of care is defined as 2 visits with a comprehensive adult sickle cell program in the first year. Visits can be in person or via telemedicine. | 78.3 |
| Standard | A successful integration to adult care is defined as completion of at least 50% of annual outpatient visits in the 5-year period after transfer of care and the patient identification of the adult center as their sickle cell medical home. | 72.5 |
| Recommendation | Referring comprehensive pediatric and receiving adult sickle cell providers (preferably entire sickle cell care teams and CBO liaison when feasible) should have joint meetings to discuss patients who are nearing transition. | 89.9 |
| Recommendation | Joint pediatric to adult provider TOC visits should be a billable service for both clinicians. | 91.3 |
| Recommendation | Every comprehensive pediatric sickle program should have a “universal care plan” document in the EHR that incorporates essential items of TOC to keep track of services relevant for a pediatric/adult/life span program. | 88.4 |
| Recommendation | A pediatric summary EHR TOC “handoff” note should be utilized to facilitate pediatric TOC between pediatric and adult care providers (this note should be updated at each pediatric comprehensive visit in preparation for patient TOC). | 95.7 |
| Recommendation | The receiving adult sickle cell care team/provider should provide an “intake document”/progress report, after initial adult visit has been completed to their respective referring clinician (pediatric team and primary care clinician). | 89.9 |
| Recommendation | All comprehensive pediatric and adult sickle cell centers should have a transition coordinator or program designee who follows patients from pediatric care into adult care until successful transition. | 87.0 |
| Recommendation | The time gap between the last pediatric clinic visits and first adult sickle cell care visit to establish care should be <3 months. | 85.5 |
| Recommendation | A formal system to identify transitioning AYA patients who have not had an initial adult visit within 6 months of last pediatric hematology visit should be established at comprehensive pediatric and adult sickle cell centers. | 92.8 |
| Recommendation | The initial adult visit to a new institution should include communication between blood banks about RBC genotyping/phenotyping and transfusion history. | 92.8 |
CBO, community based organization; EHR, electronic health record; RBC, red blood cell; TOC, transition of care.