Figure 1.

Example rating form of patient scenarios. Each cell represents 1 patient scenario. The table is read from top to bottom and left to right. For example, the first cell in column A1 reads: “In a patient with no end organ damage, no chronic pain, 0–1 unscheduled acute care visits due to VOCs in the last year, with HbSS or HbSβ⁰, how often should this patient be seen by a SCD provider?” ^aThis table was replicated for each patient age group: Patient <8, 8–15 years old, 25–40 years old, >40 years old. Young children might have no history, so the classification system might not be as applicable. ^bA SCD provider includes any clinician treating SCD and its primary consequences (eg, hematologist or pulmonologist). ^cAdditional serious complications include end organ damage, sepsis, or other. ^dRisk of complications or death in the next 5 years for patients ≥16 years old and next 10 years for patients <16 years old. ^eChronic pain defined as ongoing pain present on most days over the past 6 months.¹² fAcute care includes unscheduled office visits, ED visits, day hospital visits, and hospitalizations; VOCs include pain, priapism, acute chest syndrome, splenic sequestration, and hepatic sequestration. ^gRefer to Table 1 for definitions of end organ damage provided.

Abbreviations: VOC, vaso-occlusive crisis; SCD, sickle cell disease; ED, emergency department.