Providers and patients identified two key areas and sub-themes that they believed are important in treating adults with SCD during an ED visit: acute management, and health care utilization. Acute management themes focused on identification of important physiologic indicators that would identify the need for a diagnostic work-up for complications, and on conducting a thorough pain assessment resulting in initiation and implementation of acute pain treatment. The themes that were identified may help to guide standardization of care for a group of patients for whom providers and patients are often frustrated. The themes could provide a structure of care that may ultimately result in increasing the quality of care patients receive, decreasing the variability of care provided, and providing a framework of objectivity to assessment and management of adults with SCD in the ED. Such a framework could help decrease the risk of missing a serious medical complication and help promote optimal analgesic management.
Clinician focus group participants identified specific symptoms that place SCD patients at high risk including chest pain, shortness of breath, fever, cough, signs of stroke, and priapism. The importance of obtaining a thorough history and physical, history of present illness, past medical history, and transfusion history, specific to SCD, is supported by evidence of higher mortality rates among SCD patients with increased health care utilization.7–9
Houston-Yu and colleagues found that patients with more frequent hospitalizations were at greater risk for mortality.7
Ballas and Lusardi found that 20% of SCD patients re-admitted to the hospital within one week of discharge died, compared with an 11% mortality rate among other patients.10
Platt et al. reported a classic epidemiologic study that analyzed life expectancy and risk factors for early death for patients with SCD. The median age of death in this cohort was 42 years for males and 48 years for females. While 18% of deaths in this cohort were attributable to organ failure, primarily the kidney, 33% of deaths occurred in patients free of organ failure during either an acute pain episode, acute chest syndrome, or both, and 22% had strokes.9
In summary, epidemiologic data support several sub-themes associated with acute management, and reinforce the need for a thorough physical exam, history of present illness, and past medical history.
The importance of obtaining a transfusion history was also discussed. Emergent transfusions, either simple or exchange depending on the particular patient, are indicated for acute chest syndrome, stroke, splenic or hepatic sequestration, and aplastic episodes.11–13
However, SCD patients have often received many transfusions throughout their life and are at risk for transfusion related complications (iron overload, alloimmunization, delayed hemolytic/transfusion reactions, hyperhemolytic syndrome).12
A good assessment of transfusion history and baseline hemoglobin and hematocrit should be routine and would help guide management and avoid unnecessary transfusions that place patients at greater risk of other complications.
Pain assessment and management continue to be the primary reason for most ED visits for patients with SCD. Several of the themes identified during the focus groups would guide clinicians in obtaining a more thorough pain assessment, especially for patients with multiple ED visits. There is now an understanding that many patients with SCD experience both severe acute pain from vaso-occlusive crisis, and chronic pain.14
It is essential to elicit a history of chronic daily opioid therapy, specific dosing regimens, if the patient has run out of a prescription, or if the current analgesic management plan is not sufficient. Such information should guide ED analgesic management. As identified by the participants (both patient and providers), use of individualized analgesic care plans, standard orders, and clinical pathways are preferred.11,13,15,16
Previous research demonstrates that use of standardized analgesic protocols in the ED can contribute to a decrease in ED return visits and hospitalization rate.17
Protocols including patient controlled analgesia (PCA) have been found to improve the use of more appropriate weight-based doses, and improvements in time to administration of initial opioid dose by PCA.18
However, in a national survey of emergency physicians in 1996, only 20% reported using protocols for sickle cell pain crises.19
Integration of analgesic guidelines in the ED-SCANs may help improve ED analgesic management. Fluid administration was identified as an important adjunct to analgesic management, and administration of hypotonic fluids to correct volume depletion up to 1.5 times maintenance requirements is currently recommended.11,16
While very little evidence exists to support the utility of this practice, patients reported fluid administration as an essential component of analgesic management.
Health care utilization was the second major theme identified by participants as being critical to an SCD decision support tool. Both patients and providers acknowledged the importance of assessing whether or not the patient has a medical home, as well as understanding the frequency of ED visits and hospitalizations. The relationship to frequent visits and hospitalizations and mortality has been discussed. In an examination of Florida Medicaid program data from 2001–2005, the average number of visits during the four year period was 3.8, or less than one visit/person/year.20
However, other data report between 15% to 20% of patients with SCD account for 54–58% of ED SCD visits and/or hospitalizations.21,22
Data also demonstrate that a very small number of SCD patients with frequent hospitalizations contribute to the majority of health care costs for patients with SCD.23
It appears there are a number of adults with SCD who are frequent ED utilizers. However, little is known about ED patients with frequent visits. In a recent cohort study, adult SCD patients with three or more ED visits in one year were compared to patients with fewer than three visits. Thirty-five percent of patients in the cohort met the definition of a “high utilizer.” These patients had lower hematocrit levels, more transfusions, more pain days, more painful episodes, and higher pain scores.4
The SF-12 Health Survey was administered to a separate sample of adults admitted to an academic medical center. Patients with low physical health-related quality of life, and not mental health-related quality of life, had longer hospitalizations and higher costs, suggesting patients with frequent hospitalizations are indeed sicker.24
It is important to begin to understand the group of SCD patients with high health care utilization to determine optimal ED management. Patient and nurse focus group respondents identified social support as an important theme. Participants suggested assessment of the social support system at home, the ability to obtain medications, and the basic ability to take care of one's self was important. While emergency clinicians cannot “solve” these problems, identification of these needs and referral to other services may be very important in optimizing outpatient management, which may ultimately have a large effect on ED utilization.
Finally, important considerations in determining a disposition from the ED were identified. Sub-themes included resolution of pain, a negative diagnostic evaluation, the patients' report that they can manage their pain at home, and assessment of social support available at home. These themes, as well as many other themes identified during the focus groups, were also supported by the Minnesota Sickle Cell Disease Emergency Guidelines, and include stabilization of pain and physiologic parameters.13
Key differences between the Minnesota Guidelines and themes identified by focus group participants include more detail on pain assessments, and the recommendation to develop individual and departmental analgesic protocols. Another key difference was the identification among focus group participants of the need for information regarding whether or not the patient has a physician and the frequency of ED visits, and need for hospital utilization. This information will help guide the development of ED protocols. Finally, the ED-SCANS was developed with national input. Participants in the focus groups also discussed the patients' important role in making the decision to admit, as they can best judge whether or not they will be able to continue to manage the pain episode at home. The need for evaluation of social support was also discussed. Caregiver psychological adjustment and childrens' social adjustment have been found to be independent predictors of increased ED use.25
In addition to continued uncontrolled pain or other disease complications, premature discharge prior to decreasing the pain to a level the patient can manage at home, or inattention to social factors, such as homelessness, may be associated with an ED re-visit within a short period of time with the related factors of increased mortality and morbidity previously cited.
Clinician focus group participants were also asked to discuss characteristics of a sickle cell decision support tool that would increase the likelihood of use. This final theme was included because implementation of decision support tools can be fraught with challenges and are at risk of never being used.26
Participants stressed any tool must be concise. The literature supports this and has also identified additional factors as inhibiting adoption of guidelines: attributes of the guideline itself, perceived relative advantage, compatibility with existing beliefs, difficulty of use, how well it fits in the existing workflow and culture, and being too lengthy.26–28
The ED-SCANS will need to meaningfully affect the care of SCD patients, and be easy to use and recall. Participants reiterated the importance of any tool being computer- or web-based, including a decision tree or algorithm to guide assessment and management with standing orders or protocols. A plethora of literature now exists in the field of computer-based clinical decision support systems, which will be useful in guiding the structure of the ED-SCANS.29–32
Several taxonomy axes have been identified, including the knowledge or data source included in the tool, as well as the elements of decision support.29
Many tools have been developed for emergency medicine and some examples include the Ottawa Ankle and Knee Rules, and the Canadian C-spine and Head CT rules.33–38
Adoption of these tools has been variable depending upon the country of use.39
In addition to the key stakeholder input obtained during these focus groups, lessons learned from implementation of other decision support tools targeted for EM use will help guide the key decisions, elements, and actual structure of the ED-SCANS.
Based on the data from this project, as well as literature and site visits to expert sickle cell centers, it appears that seven key decisions are important in achieving high quality ED care for adults with SCD. These decisions include the following: 1) what is the correct triage level? 2) what is the optimal analgesic management plan? 3) is a diagnostic work-up, including laboratory or radiological tests, necessary? 4) does the patient require hospital admission? 5) if discharged home, does the patient require analgesic prescriptions? 6) what medical and/or psychosocial referrals are necessary? and 7) is this a high-risk patient for overall poor disease outcomes?