Emergency department sickle cell assessment of needs and strengths (ED-SCANS), a focus group and decision support tool development project

Objectives: A decision support tool may guide emergency clinicians in recognizing assessment, analgesic and overall management, and health service delivery needs for patients with sickle cell disease (SCD) in the emergency department (ED). We aimed to identify data and process elements important in making decisions regarding evaluation and management of adult patients in the ED with painful episodes of SCD. Methods: Qualitative methods using a series of focus groups and grounded theory were used. Eligible participants included adult clients with SCD and emergency physicians and nurses with a minimum of 1 year of experience providing care to patients with SCD in the ED. Patients were recruited in conjunction with annual SCD meetings, and providers included clinicians who were and were not affiliated with sickle cell centers. Groups were conducted until saturation was reached and included a total of two patient groups, three physician groups, and two nurse groups. Focus groups were held in New York, Durham, Chicago, New Orleans, and Denver. Clinician participants were asked the following three questions to guide the discussion: 1) what information would be important to know about patients with SCD in the ED setting to effectively care for them and help you identify patient analgesic, treatment, and referral needs? 2) What treatment decisions would you make with this information? and 3) What characteristics would a decision support tool need to have to make it meaningful and useful? Client participants were asked the same questions with rewording to reflect what they believed providers should know to provide the best care and what they should do with the information. All focus groups were audiotaped and transcribed. The constant comparative method was used to analyze the data. Two coders independently coded participant responses and identified focal themes based on the key questions. An investigator and assistant independently reviewed the transcripts and met until the final coding structure was determined. Results: Forty-seven individuals participated (14 persons with SCD, 16 physicians, and 17 nurses) in a total of seven different groups. Two major themes emerged: acute management and health care utilization. Major subthemes included the following: physiologic findings, diagnostics, assessment and treatment of acute painful episodes, and disposition. The most common minor subthemes that emerged included past medical history, presence of a medical home (physician or clinic), individualized analgesic treatment plan for treatment of painful episodes, history of present illness, medical home follow-up available, patient-reported analgesic treatment that works, and availability of analgesic prescription at discharge. Additional important elements in treatment of acute pain episodes included the use of a standard analgesic protocol, need for fluids and nonpharmacologic interventions, and the assessment of