Baseline Patient and Provider Reports of Quality of Care and Confidence Providing ED Management of Vaso-Occlusive Episodes

Introduction - Persons with sickle cell disease (SCD) and emergency department (ED) providers often report dissatisfaction with ED management of vaso-occlusive episodes (VOE). Prior to implementation of individualized pain plans (IPP's) visible to the provider AND patient, for use in the ED to treat VOE, we assessed: 1) patient perceived quality of ED pain treatment of a VOE within the last 90 days and 2) ED provider perceived quality of ED pain treatment and provider self-efficacy in treating VOEs.

Methods Eight centers participating in the NIH/NHLBI-funded Sickle Cell Disease Implementation Consortium (SCDIC) participated in the prospective ALIGN protocol implementing IPPs visible to providers AND patients via the electronic patient portal. Patient inclusion criteria: one of the following SCD genotypes: HbS S, Hb SC, HB S+, Hb S0, other rare genotypes, English speaking, ages 18-45 years, access to a smartphone, with access to text messaging or internet, at least one VOE to the participating sites' ED within the last 90 days, and one visit to the sites' SCD clinic within the last 12 months. Hematologists could exclude patients where an individualized pain plan (IPP) was not appropriate, or opioids were contraindicated. Emergency physicians, physician assistants and nurse practitioners who worked in the study ED and would have access to the electronic IPP were eligible to participate. Patients consented in clinic or by phone or videoconference. At enrollment, patients were asked three questions about the last ED visit within the last 90 days at that site using the Adult Sickle Cell Quality of Care questions: 1) Were you satisfied with the care you received?, 2) How much were the ED doctors and nurses able to help your pain, and 3) How much did the ED doctors and nurses believe that you had very bad sickle cell pain? Each question was answered using a 5-point Likert scale (not at all, a little bit, somewhat, quite a bit and very much). Upon enrollment of ED providers, they responded to three items: 1) I do a good job managing pain for patients with SCD, 2) How comfortable are you with your ability to manage acute pain episodes experienced by patients with SCD, and 3) how likely are you to use the IPP when a patient with SCD has an ED visit? A Likert scale was used to rate their level of agreement with each question (1=total disagree, 7=totally agree). Descriptive statistics were used to analyze the data.

Results - Patients (n=280) were majority female (55%) and Black (84%); SS was the most common genotype (60%). Providers (n=403) were majority male (54%), White (70.5%), and physicians (65%). Mean patient age at enrollment was 29.2 (SD=6.9). Seventy three percent of patients reported being either very much, somewhat or quite a bit satisfied. When asked how well the ED physicians and nurses helped their pain, 71% of patients reported either very much, somewhat or quite a bit, indicating fairly good satisfaction with pain management. When asked to report how much the ED physicians and nurses believed they had very bad pain, 80% of patients reported either very much, somewhat, or quite a bit, again indicating patients thought providers believed their severe pain. Seventy three percent of providers agreed or strongly agreed with the statement that they did a good job managing patients with SCD. When asked more specifically about confidence in managing VOE pain, 79% of providers reported scores of 5, 6 or 7. Finally, 89% of respondents reported being either very likely or likely to use IPPs for patients during an ED visit.

Conclusions - In these specialized SCD centers of which only two did not have an existing IPP visible to the provider in the EHR, patients reported high satisfaction with their ED care during a prior visit within the last 90 days. No sites previously had guideline-based standardized VOE protocols widely available to patients at baseline. ED providers reported high confidence and comfort managing VOE. These results contradict most reports of poor satisfaction from both patients and providers, and may be due to existing ED VOE management at these centers. Future work will report changes in patient satisfaction and provider comfort level after implementation of IPPs visible to both the ED provider, and to the patient, via their EHR, and evaluate why these results are unusually positive.

Tanabe:CSL Behring: Consultancy; NIH: Research Funding. Hankins:Forma Therapeutics: Consultancy; CVS Health: Consultancy; NHLBI: Membership on an entity's Board of Directors or advisory committees, Research Funding; CDC: Research Funding; GBT: Consultancy; ASH: Membership on an entity's Board of Directors or advisory committees; HRSA: Research Funding. Gordeuk:Forma: Consultancy; GSK: Consultancy; GBT: Consultancy, Research Funding; CSL Behring: Consultancy, Research Funding. Treadwell:Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees. King:Global Blood Therapeutics: Consultancy, Research Funding.