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Logo of nihpaAbout Author manuscriptsSubmit a manuscriptNIH Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
 
Acad Emerg Med. Author manuscript; available in PMC Aug 1, 2011.
Published in final edited form as:
PMCID: PMC2914333
NIHMSID: NIHMS198142
Emergency Department Sickle Cell Assessment of Needs and Strengths (ED-SCANS), a Focus Group and Decision Support Tool Development Project
Paula Tanabe, PhD, MPH, CDR, Christopher Reddin, MSN, RN, CEN, Victoria L. Thornton, MD, MBA, Knox H. Todd, MD, MPH, Ted Wun, MD, and John S. Lyons, PhD
Department of Emergency Medicine and the Institute for Health care Studies, Feinberg School of Medicine, Northwestern University (PT) Chicago, IL; United States Navy Nurse Corps, Chicago, IL, Rush University College of Nursing, (CR) Chicago IL; Pain Management and Palliative Care in Emergency Medicine, Department of Surgery, Duke University Medical Center (VLT) Durham, NC; Emergency Medicine, Albert Einstein College of Medicine (KHT) New York, NY, and Pain and Emergency Medicine Institute, Beth Israel Medical Center, (KHT) New York, NY; Hematology Oncology, VA Northern CA Health Care System, and University of CA, Davis, Clinical and Translational Science Center, Clinical Research Center (TW) Sacramento, CA; Division of Psychology, Mental Health Services and Policy Program, Northwestern University, (JSL) Chicago, IL
Corresponding Author: Paula Tanabe, PhD, MPH Department of Emergency Medicine and the Institute for Health care Studies Feinberg School of Medicine, Northwestern University 750 N. Lake Shore Drive, 10th Floor Chicago, IL 60611 ; Ptanabe2/at/nmff.org B: (312)503-1292
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 sickle cell disease.
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 one 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 re-wording 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 audio taped 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 sub-themes included the following: physiologic findings, diagnostics, assessment and treatment of acute painful episodes, and disposition. The most common minor sub-themes 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 non-pharmacologic interventions, and the assessment of typicality of pain presentation. The patients' interpretation of the need for hospital admission also ranked high.
Conclusions
Participants identified several areas that are important in the assessment, management, and disposition decisions that may help guide best practices for SCD patients in the ED setting.
Keywords: pain, sickle cell disease, decision support, emergency department
Sickle cell disease (SCD; genetically homozygous hemoglobin S and compound heterozygotes of HbS, HbC, or β-thalassemia) is a chronic disease associated with a diversity of serious pathophysiologic complications including, but not limited to, chronic hemolytic anemia, stroke, acute chest syndrome, pulmonary embolus, pulmonary hypertension, cholecystitis, hepatic and splenic sequestration, retinal detachment and hemorrhage, aseptic necrosis of the joints, priapism, iron overload, and chronic leg ulcers. Patients with SCD often present to the emergency department (ED) with acute pain crisis, often referred to as a vaso-occlusive crisis (VOC). Patients describe this pain as severe, and often of sudden onset. While the frequency and severity of complications varies widely, it is likely that all persons with SCD will obtain care in the ED at some point in time.
It is common for both SCD patients and providers to be frustrated by ED care.13 ED clinicians (physicians and nurses) often characterize the patient with SCD as addicted to opioids and “drug-seeking.”3 Patients often sense this attitude and are intimidated by ED care and care providers. One of the reasons that clinicians may be frustrated with this group of patients is caring for the relatively small subset of SCD patients who are frequent ED visitors. The reasons for multiple visits in some patients are largely unknown, although recent data suggest these patients have more severe disease than SCD patients with infrequent ED use.4 It is also possible that patients with frequent ED visits may experience inadequate analgesic management, lack a primary care provider (PCP) or medical home, or have other psychosocial co-morbidities. Often PCPs share the same concerns of a high risk of addiction and may lack adequate knowledge to provide medical care to this group of medically complex patients.
The goal of optimal ED management for persons with SCD is reduction of pain to a manageable level, and evaluation and treatment of other complications. While most patients come to the ED for management of a VOC, SCD patients are at risk for the previously mentioned life-threatening complications. In 2004, three quarters of the 83,149 hospitalizations for SCD originated in the ED. The death rate was 0.70%, and the most common causes of death were due to infections (sepsis and pneumonia).5 The complexity and potential morbidity of SCD warrants a comprehensive assessment in the ED. A succinct decision support tool may help guide clinicians in the performance of such an assessment. The benefits of an assessment would identify unmet patient needs and help guide ED management and referrals. A brief, easy-to-use tool that guides the emergency clinicians in the identification of such needs may help accomplish the following goals: 1) rapidly and aggressively manage VOC pain in the ED; 2) identify life-threatening conditions and determine the need for further diagnostic evaluation; 3) decrease hospital admission rates; 4) decrease unscheduled return visits to the ED; 5) identify medical and psychosocial needs and facilitate appropriate referrals made from the ED; and 6) increase both patient and clinician satisfaction with the ED experience. Currently, such an assessment tool does not exist.
This project aimed to obtain key stakeholder input to guide the development of the Emergency Department Sickle Cell Assessment of Needs and Strengths (ED-SCANS), a decision support tool for adult patients with SCD in the ED. Specifically, the goals were to identify key domains for the ED-SCANS, and to identify structural and process components that would increase the likelihood of adoption of ED-SCANS.
Study Design
This was a qualitative study with grounded theory, using a constant comparative method. These methods are used to explore a topic in which little data exists.6 Key stakeholders are interviewed using either individual interviews or by participation in a focus group. Institutional review board approval was obtained and subjects signed a written consent prior to study participation.
Study Setting and Population
A series of focus groups was conducted in academic medical centers across the United States. Purposeful sampling was used to select the sites for conducting the clinician (emergency physician and nurse) and patient focus groups. Clinicians were recruited from three academic medical centers with a minimum of one ED visit per day for SCD. Clinicians reported an annual overall ED census at the three centers between 40,000–120,000 visits. Sites were selected from across the United States to identify potential geographic differences. Two sites had an organized outpatient health care system for patients with SCD, and one site did not. A total of three physician focus groups (New York, North Carolina, and Denver) and two nurse groups (North Carolina and Denver) were conducted. The groups in North Carolina and Denver were conducted at the same facility, but with separate groups for nurses and physicians. It was necessary to conduct a third group with physicians to achieve saturation; that is, to verify that no new responses were being generated. An ED from New York was selected to obtain regional variation from the east coast. Repetitive responses were generated earlier from the nursing cohort, so that it was not necessary to conduct a third group with emergency nurses. Two patient groups were conducted in conjunction with state or national SCD meetings. Patients attending the focus group in New Orleans were invited to participate during the National Sickle Cell Disease Association of America meeting. Patients attending this meeting lived in areas throughout the United States. A second patient focus group was conducted and persons with SCD attending the Sickle Cell Disease Association of Illinois annual conference were invited to participate.
Emergency clinicians with one year or greater experience providing care to adults with SCD in the ED, and adult patients with SCD with previous ED visits were eligible for inclusion. A total of seven focus groups were conducted with 47 participants (14 patients, 17 emergency nurses, and 16 emergency physicians). Children (less than age 18) and patients with sickle cell trait were excluded.
Study Protocol
Recruitment Strategies
Clinicians from each site were recruited using flyers and word-of-mouth. Flyers were posted several weeks prior to each focus group at each setting. Physician and nurse colleagues from each site posted the flyers and discussed in person and via e-mail the opportunity to participate at meetings. Groups were scheduled at a date and time convenient for each setting. Patients attending the Sickle Cell Disease Association of Illinois meeting were invited to participate in a group on the morning of the conference. The focus group was held immediately after the conference at the hotel site. Patients who attended the National Sickle Cell Disease Association of America meting were recruited via an announcement (including date/time/location of the focus group) placed in the meeting program that all conference attendees received prior to attending the meeting. The first 10 participants for each group who arrived were invited to participate.
Focus Group Procedures
The principal investigator (PI) received specific didactic coursework and training in qualitative research methods, and had experience in conducting qualitative research. The PI conducted all focus groups. Prior to beginning each group, the PI explained the research project and study procedures. Subjects were informed that the focus group would be audio-taped. All participants were provided with a $25 gift card as appreciation for their time and participation in the group prior to beginning the focus group discussion. Clinician participants were then asked to complete a brief survey which included demographic characteristics (age, sex, race), discipline, years of experience, questions investigating their frustration in caring for patients with SCD, and a comparison of the perception of frequency of opioid addiction among persons with SCD compared to the general population and the ED population. Patient participants were asked to complete a brief survey that included demographic characteristics (age, sex, race), sickle cell genotype, frequency of pain episodes, health care utilization, complications of SCD, and relationship with a physician.
All participants were asked to identify a code name to help maintain anonymity (i.e. nurse blue, Dr. Elvis) and facilitate transcription. Prior to speaking, participants were asked to identify their code name. Two hours were scheduled for each group. Two digital tape recorders were used to record each focus group. Several questions were used to guide the discussion and are listed below. Attempts to minimize researcher bias were made. This was achieved by allowing the group to explore the questions with only minimal direction from the PI. The PI redirected the conversation only when necessary and did not participate in the discussion.
Guiding Questions: Emergency Physicians and Nurses
  • 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?
  • What treatment decisions would you make with this information?
  • What characteristics would a decision support tool need to have to make it meaningful and useful?
Guiding Questions: Patients
  • What information should emergency department physicians and nurses know that would be important to know about you to effectively care for you and identify analgesic, treatment, and referral needs?
  • What should they do with this information?
Data Analysis
A one sample t-test was used to analyze the difference between clinician perceptions of addiction in the general population, ED patients, and ED patients with SCD. A standard qualitative approach using the constant comparative method was used to analyze the focus group data. These methods are used when little is known about a research topic area, and are appropriate for early investigations. Digital files from each of the seven focus groups were transcribed into Word documents (Microsoft Inc., Redmond WA) and analyzed to evaluate inter-rater reliability. Analysis of latent (meaning of the words) vs. manifest (actual words) content analysis was used. The PI and a second reviewer not involved with the project (doctoral student and emergency nurse) independently reviewed the majority of single patient, nurse, and physician transcripts and identified common themes and sub-themes. The PI trained the second reviewer in qualitative methods prior to review of the transcripts. After the initial independent review, the PI and second reviewer met and discussed the themes. A new coding structure was identified. The reviewers then independently reviewed all the transcripts again using the new coding structure. Following the second independent review using the revised coding structure, the reviewers met again to review the themes. Initial agreement was again less than optimal, and the coding structure was revised after lengthy discussion of the themes and potential structure and interpretation. The reviewers made additional minor revisions to the coding scheme. Reviewers then independently reviewed and re-coded all seven transcripts for the third time and then met to compare thematic structure. After the final revisions, agreement among the two coders was 81%, and resulted in the final coding structure. In order to assess validity of the themes identified, member-checking was conducted. Relevant portions of one physician, one nurse, and one patient transcript, along with the final coding scheme that emerged, were provided to one physician, one nurse, and one patient who participated in each respective group. They were each asked to compare their recollection of the group discussion with the final coding scheme. The transcript was provided to “refresh their memory” of the discussion. This is a final step used in qualitative research to strengthen the validity of the interpretation of the transcripts and final coding scheme.
Seven focus groups were conducted until saturation was achieved: i.e. when no new themes were identified. Table 1 describes patient characteristics and survey responses. Patients resided in the following states: California (1), Illinois (4), Kansas (1), Louisiana (2), North Carolina (2), Pennsylvania (1), and Tennessee (2). Table 2 describes clinician demographic characteristics and survey responses. Clinician participants were asked to report “What proportion of adult patients with SCD do you believe is addicted to opioids, compared to the general and ED population?” Respondents reported believing significantly more patients (p < 0.01) with SCD were addicted to opioids (mean 36%, SD ±33%) compared to the general public (mean 13%, SD ±17%), or the ED population (mean 19%, SD ±20%).
Table 1
Table 1
Patient Characteristics and Survey Responses
Table 2
Table 2
Clinician Characteristics and Survey Responses
Tables 3 through through55 summarize the major emergent themes and sub-themes, as well as selected quotes associated with each theme. The following three major themes emerged as the final parsimonious coding structure: acute management, health care utilization, and decision support tool characteristics to enhance use. The concept of “red flags” was an over-arching theme within the clinician focus groups. A “red flag” typically refers to an abnormal finding or a high-risk situation. Recognition of a red flag leads to a defined action by the physician or nurse. Clinician participants believed the identification of red flags would heighten awareness and help prevent missing serious complications, which is possible when becoming accustomed to focusing on management of acute pain episodes. Identification of red flags could also identify problems in pain management that may contribute to the need for an ED visit for pain. Clinicians also frequently compared sickle cell disease to asthma in regards to health care utilization. Optimal management of both diseases requires long term management with a PCP or having a medical home, and lack of a medical home could theoretically contribute to increased ED visits.
Table 3
Table 3
Acute Management
Table 5
Table 5
Decision Support Tool Characteristics
Sub-themes identified within acute management included physiologic, diagnostic, pain assessment and treatment, and disposition variables. Important physiologic variables followed the medical model and included past medical history, determination of genotype, transfusion history, vital signs, history of present illness, and physical examination. The presence of abnormal findings identified during the physical examination was the most important variable discussed and mentioned most frequently. While obtaining a history and physical examination are routine, participants discussed findings that should heighten awareness and be considered red flags in a patient with SCD. For example, a fever requires careful evaluation due to the higher risk of sepsis. Acute chest syndrome should be considered for patients with any cough and decreased oxygen saturation. Other variables uniquely important to the patient with SCD included transfusion history and genotype. Treatment for stroke and acute chest syndrome in SCD often involves simple or exchange transfusion. It is important to know the patients' transfusion history for these conditions, as well as in general, as many SCD patients live with very low hemoglobin levels. It may be tempting to transfuse a patient with low hemoglobin; however, this may or may not be indicated, as many patients with SCD who receive chronic transfusions also may suffer from iron overload. Diagnostics was a sub-theme of acute management. The importance of knowing a baseline complete blood count (CBC) and the need for ordering other diagnostics, in particular a chest x-ray, was discussed. Little consensus was reached beyond evaluation of a CBC and chest x-ray associated with respiratory symptoms.
Pain assessment and treatment was the third important sub-theme identified within acute management. Red flags of a pain assessment that were identified included an atypical pain crisis, lack of intravenous access, patient ran out of analgesic prescriptions or analgesics are not working, prolonged pain episode, or symptoms of withdrawal. These questions are particularly important for patients with SCD because interventions will be very different if a patient just ran out of medications or if this is not a typical pain crisis. Patients who ran out of analgesics or who have analgesics that are not working most likely need adjustments in their opioid prescriptions, ideally from a PCP or sickle cell care provider. Patients with an atypical pain crisis will require careful evaluation for the source of the pain, which might be a harbinger of a more serious complication of their disease. Other important assessment parameters included pain intensity score and the patients' pain goal for ED discharge, location of pain, identification of triggers, analgesic medications taken daily, and the clinician's acceptance of the patient's preferred analgesic agents/doses that should be used in the ED. Important components of pain treatment included the determination of whether or not the patient had an individualized analgesic treatment plan available, and if not, if the ED had a standing order for analgesics for SCD patients. The development of individualized plans was clearly identified as the gold standard. The importance of aggressive intravenous fluid replacement (unless contraindicated), supplemented by allowing the patient to drink, was also stressed as a critical component of pain management. Finally, patients in particular articulated the importance of using non-pharmacologic (heat, warm blankets, and distraction) approaches to help decrease pain.
The disposition decision (admit vs. discharge) was the final sub-theme identified under acute management. Red flags that would indicate the need for admission included the following: the patient's determination that he or she would require hospitalization, continued abnormal vital signs, abnormal laboratory or radiologic findings, the inability to meet the patient's desired pain goal, and the inability to resolve other symptoms (shortness of breath, etc.). In these cases the decision would be most likely to admit. In some cases, the lack of social support at home might be a factor in determining the need to admit an individual patient.
The second major theme identified was health care utilization. The importance of having a medical home was stressed in all focus groups and was the second most frequent theme discussed during all the focus groups. Participants discussed the importance of investigating whether or not the patient actually had a provider. This reflects upon the inability of ED clinicians to manage a serious chronic disease such as SCD in the ED, and reflects the frequent frustration experienced by many emergency physicians and nurses. Red flags discussed were the lack of a medical home, multiple ED visits or hospital admissions, the inability to obtain follow-up care or analgesic prescriptions, when patients should return to the ED, and how to follow up with their PCP.
The third major theme to emerge during the clinician focus groups was how to make a decision tool that was meaningful and useful. Clinicians reported the following characteristics: computer or web-based, a decision tree or algorithmic format, incorporation of standing orders or protocols, and being very concise. Specifically mentioned were integration of analgesic protocols and red flags indicative of serious complications that might be missed without careful attention.
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.79 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.1113 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.2628 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.2932 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.3338 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?
Patient participants were not high ED utilizers; however, all patients reported previous ED experience as well as serious medical complications and pain episodes requiring ED management. Patient participants were also highly motivated. Two of the three settings for physician and nurse focus groups were affiliated with sickle cell programs with a specific physician sickle cell expert available to provide care to adults, as well as other multi-disciplinary support available. The third setting did not have an affiliated program. However, these are considered minor limitations. We purposefully recruited providers with varying levels of expertise in SCD. While patients reported infrequent use of the ED at this point in their disease, they were clearly able to articulate what they needed during an ED visit.
CONCLUSIONS
Emergency physicians and nurses, and adult patients with sickle cell disease, identified important information necessary to provide the highest quality care and optimal analgesic management during an ED visit. In addition, they endorsed the potential value of a decision support tool aimed at optimizing care of the patient with sickle cell disease, but only if it is found to be clinically meaningful and user friendly. Data from this study are being used to develop a biopsychosocial decision support tool, the Emergency Department Sickle Cell Assessment of Needs and Strengths (ED-SCANS), for use with adult sickle cell disease patients in the emergency department.
Table 4
Table 4
Health Care Utilization
Acknowledgements
The authors would like to thank the physicians, nurses, and persons with sickle cell disease who participated in this project, and Autumn Stevenson who provided project support. A special thanks to Kathy Hassell and Amy Zosel who assisted in clinician recruitment. We also would like to thank the Sickle Cell Disease Association of America and the Sickle Cell Disease Association of Illinois who helped to recruit persons with sickle cell disease.
Financial Support: Dr. Tanabe was supported by the National Institutes of Health, K23NR010940.
Footnotes
CoI: none declared
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