Electronic health record transition handoff elements
| Data element(s) . | All centers (N = 69), % . | ||
|---|---|---|---|
| Number of hospitalizations, ED visits, and ICU admissions in the past 12 months | 95.7 | ||
| Anticoagulation history | 87.0 | ||
| Clinician's narrative note | 94.2 | ||
| Contact information | 97.1 | ||
| Completion of a pediatric guideline-based transition education program | 72.5 | ||
| Contraception (for person with a uterus) | 75.4 | ||
| Confirmation of disease type and all appropriate genotyping/diagnostic history | 100 | ||
| Current research trial participation | 85.5 | ||
| Demographics (inc. insurance information) | 89.9 | ||
| Education and employment information | 73.9 | ||
| Health maintenance results (eg, CNS MRI, and eye examination, etc) | 98.6 | ||
| Immunization history | 97.1 | ||
| Mental health summary (if available) | 88.4 | ||
| Name of primary care clinician | 92.8 | ||
| Non-DMT medications | 79.7 | ||
| Neuropsych testing | 73.9 | ||
| Other chronic diseases for which subspecialty care is needed | 97.1 | ||
| Pregnancies, complications, and outcomes | 89.9 | ||
| Prior surgeries and dates | 89.9 | ||
| Referring primary care pediatric provider and hematologist information | 94.2 | ||
| Sickle cell disease complications | 100 | ||
| Social determinants of heath information | 82.6 | ||
| Clinical and laboratory section data element(s) | Yes, % | Value, % | Date, % |
| Most recent clinical and laboratory tests on record | 95.7 | 82.6 | 84.1 |
| Most recent vital signs on record | 84.1 | 73.9 | 66.7 |
| Last hydroxyurea laboratory tests on record | 88.4 | 78.3 | 75.4 |
| Disease modifying therapy section data element(s) | Yes, % | Dose, % | Date, % |
| Name of drug (Criz., Vox., and L-Glut., etc.) | 98.6 | 91.3 | 92.8 |
| Name of gene therapy | 95.7 | 63.8 | 88.4 |
| HSCT | 97.1 | 91.3 | |
| Data element(s) | Yes, % | ||
| Transfusion history | 88.4 | ||
| Red cell alloimmunization history | 95.7 | ||
| Estimated number of transfusions | 97.1 | ||
| Premeds used | 75.4 | ||
| Type of transfusion | 95.7 | ||
| Apheresis goals and indications | 100 | ||
| DHTR history | 91.3 | ||
| History of transfusion reactions | 97.1 | ||
| Health maintenance section data element(s) | Yes, % | Result, % | Date, % |
| Audiogram (if on chelation) | 85.5 | 76.8 | 78.3 |
| Brain MRI/MRA | 97.1 | 87.0 | 84.1 |
| Cardiac MRI | 85.5 | 81.2 | 78.3 |
| ECHO | 97.1 | 87.0 | 85.5 |
| Hip MRI | 75.4 | 69.6 | 71.0 |
| Liver MRI | 84.1 | 78.3 | 79.7 |
| PFT | 85.5 | 79.7 | 78.3 |
| Pain section data element(s) | Yes, % | ||
| Acute and chronic pain history | 98.6 | ||
| Opioid type/dosing/fill frequency | 100 | ||
| Other modalities tried and outcomes | 94.2 | ||
| Pain management specialist/contact information (if applicable) | 95.7 | ||
| Treatment plans: outpatient/AIC/ED/inpatient | 94.2 | ||
| Selected immunizations | Yes, % | Date series finished, % | |
| Pneumococcal vaccination | 100 | 88.2 | |
| MenA immunization | 97.1 | 83.8 | |
| MenB immunization | 95.6 | 83.8 | |
| Last influenza vaccine | 83.8 | 73.5 | |
| COVID-19 vaccine | 86.8 | 79.4 | |
| Data element(s) . | All centers (N = 69), % . | ||
|---|---|---|---|
| Number of hospitalizations, ED visits, and ICU admissions in the past 12 months | 95.7 | ||
| Anticoagulation history | 87.0 | ||
| Clinician's narrative note | 94.2 | ||
| Contact information | 97.1 | ||
| Completion of a pediatric guideline-based transition education program | 72.5 | ||
| Contraception (for person with a uterus) | 75.4 | ||
| Confirmation of disease type and all appropriate genotyping/diagnostic history | 100 | ||
| Current research trial participation | 85.5 | ||
| Demographics (inc. insurance information) | 89.9 | ||
| Education and employment information | 73.9 | ||
| Health maintenance results (eg, CNS MRI, and eye examination, etc) | 98.6 | ||
| Immunization history | 97.1 | ||
| Mental health summary (if available) | 88.4 | ||
| Name of primary care clinician | 92.8 | ||
| Non-DMT medications | 79.7 | ||
| Neuropsych testing | 73.9 | ||
| Other chronic diseases for which subspecialty care is needed | 97.1 | ||
| Pregnancies, complications, and outcomes | 89.9 | ||
| Prior surgeries and dates | 89.9 | ||
| Referring primary care pediatric provider and hematologist information | 94.2 | ||
| Sickle cell disease complications | 100 | ||
| Social determinants of heath information | 82.6 | ||
| Clinical and laboratory section data element(s) | Yes, % | Value, % | Date, % |
| Most recent clinical and laboratory tests on record | 95.7 | 82.6 | 84.1 |
| Most recent vital signs on record | 84.1 | 73.9 | 66.7 |
| Last hydroxyurea laboratory tests on record | 88.4 | 78.3 | 75.4 |
| Disease modifying therapy section data element(s) | Yes, % | Dose, % | Date, % |
| Name of drug (Criz., Vox., and L-Glut., etc.) | 98.6 | 91.3 | 92.8 |
| Name of gene therapy | 95.7 | 63.8 | 88.4 |
| HSCT | 97.1 | 91.3 | |
| Data element(s) | Yes, % | ||
| Transfusion history | 88.4 | ||
| Red cell alloimmunization history | 95.7 | ||
| Estimated number of transfusions | 97.1 | ||
| Premeds used | 75.4 | ||
| Type of transfusion | 95.7 | ||
| Apheresis goals and indications | 100 | ||
| DHTR history | 91.3 | ||
| History of transfusion reactions | 97.1 | ||
| Health maintenance section data element(s) | Yes, % | Result, % | Date, % |
| Audiogram (if on chelation) | 85.5 | 76.8 | 78.3 |
| Brain MRI/MRA | 97.1 | 87.0 | 84.1 |
| Cardiac MRI | 85.5 | 81.2 | 78.3 |
| ECHO | 97.1 | 87.0 | 85.5 |
| Hip MRI | 75.4 | 69.6 | 71.0 |
| Liver MRI | 84.1 | 78.3 | 79.7 |
| PFT | 85.5 | 79.7 | 78.3 |
| Pain section data element(s) | Yes, % | ||
| Acute and chronic pain history | 98.6 | ||
| Opioid type/dosing/fill frequency | 100 | ||
| Other modalities tried and outcomes | 94.2 | ||
| Pain management specialist/contact information (if applicable) | 95.7 | ||
| Treatment plans: outpatient/AIC/ED/inpatient | 94.2 | ||
| Selected immunizations | Yes, % | Date series finished, % | |
| Pneumococcal vaccination | 100 | 88.2 | |
| MenA immunization | 97.1 | 83.8 | |
| MenB immunization | 95.6 | 83.8 | |
| Last influenza vaccine | 83.8 | 73.5 | |
| COVID-19 vaccine | 86.8 | 79.4 | |
AIC, ambulatory infusion center; CNS, central nervous system; Criz, crizanlizumab; DHTR, delayed hemolytic transfusion reaction; DMT, disease modifying therapy; ECHO, echocardiography exam; L-Glut, L-glutamine; MenA, meningitis A; MenB, meningitis B; MRA, magnetic resonance angiography; MRI, magnetic resonance imaging; PFT, pulmonary function tests; Vox, voxelotor.