Abstract
Objective:
Guided by an implementation science framework, this needs assessment identifies institutional, provider, and patient-level barriers to care of Sick Cell Disease (SCD) in the Emergency Department (ED) to inform future interventions conducted by the multi-center Sickle Cell Disease Implementation Consortium (SCDIC).
Methods:
The SCDIC developed and implemented a validated needs assessment survey administered to a cross-sectional convenience sample of patients with SCD and ED providers caring for them. In total, 516 adolescents and adults with SCD and 243 ED providers from seven and five regions of the US, respectively, responded to the ED care delivery for SCD survey.
Results:
Survey results demonstrated that 84.5% of respondents with SCD have an outpatient provider who treats many patients with SCD. In the ED, 54.3% reported not getting care fast enough and 46.0% believed physicians did not care about them and similarly of nurses (34.9%). Consequently, 48.6% were “never” or “sometimes” satisfied with their ED care. Of surveyed ED providers, 75.1% were unaware of the National Heart, Lung, and Blood Institute recommendations for vaso-occlusive crises, yet 98.1% were confident in their knowledge to care for patients with SCD. ED providers identified the following factors as barriers to care administration: “opioid epidemic” (62.1%), “patient behavior” (60.9%), “overcrowding” (58.0%), “concern about addiction” (47.3%) and “implicit bias” (37.0%).
Conclusions:
The results underscore that many patients with SCD are dissatisfied with their ED care and highlight challenges to optimal care on the practice, provider and patient levels. Exploring these differences may facilitate improvements in ED care.
Introduction:
Sickle cell disease (SCD) is a rare hemoglobinopathy that distorts the shape of hemoglobin with severe, life-threatening consequences.1 Patients can develop multiple complications including but not limited to infections, painful vaso-occlusive crises (VOC), anemia, and hypercoagulability and as a result, patients may find it challenging to manage their symptoms at home. While there have been pharmacologic and care-delivery advances in the treatment of SCD over the years, the life expectancy of individuals with SCD remains two to three decades shorter than the general population.2 Furthermore, despite improvements in management of sickle cell pain with the addition of hydroxyurea in routine care protocols, pain remains the primary cause of SCD patients seeking medical attention in the emergency department (ED).3
Several studies have attempted to assess the impact the burden of SCD on the ED. The CDC estimates there are approximately 100,000 people living with sickle cell disease in the United States of America.4 A recent study suggests that between 2010 and 2015 there were 1.4 million ED visits by patients with SCD, of which 860,000 were for painful crises and by primarily publicly insured patients.5 With such high utilization of the ED, it is important to assess the needs of patients with SCD and limitations of providers in order to optimize their outpatient care with the goal of decreasing admissions to the hospital and ED visits.
To address this limitation, the National Heart, Lung, and Blood Institute (NHLBI)-funded Sickle Cell Disease Implementation Consortium (SCDIC) examined the demographic, socioeconomic and social characteristics of patients living with SCD in health care institutions across the country.6 The information from this needs assessment highlights some of the disparate perspectives of patients with SCD receiving care and the ED physicians and non-physician providers who treat them. By examining the different perceptions patients and providers may have towards ED care, we hope to gain better insight into barriers to optimal ED management and healthcare gaps leading to high ED utilization.
Methods
The SCDIC is comprised of eight clinical sites in the US, the NHLBI, and a data coordinating center. It uses implementation science to identify and address barriers to quality care for people living with SCD.6 A list of the consortium’s members is included in Appendix 1. This paper reports findings from the quantitative component of the patient needs assessment and provider ED survey conducted by the SCDIC.
Needs assessment survey development
The needs assessment surveys’ primary goals were to measure patient satisfaction with their SCD care and ED management, as well as to document health care providers’ reflections on their ability to manage sickle cell patients presenting with VOC. Between September 2016 and February 2017, the SCDIC Needs Assessment Subcommittee (with at least one member per site) convened regularly to plan the patient and ED provider needs assessments. Each site’s representative created a domain matrix, detailing areas of SCD care to be addressed in the needs assessment. Through an iterative process, these domain matrices were harmonized and subcommittee members provided validated instruments (when available) to quantify constructs in each domain. “Challenges to care,” “the patient experience,” “demographics,” and “organizational readiness” emerged as priority areas for the needs assessments’ minimum dataset.
After the patient and provider needs assessment surveys were drafted, the subcommittee performed a “map and gap” exercise to identify domains of SCD care omitted from the needs assessment in its current form. Gaps identified included: perceived confidence in provider, the general function of the healthcare system, provision and adequacy of SCD-specific care (such as pain clinics), challenges experienced by new Medicaid enrollees, health literacy, and access to staff/hours of operation. After discussion, the subcommittee agreed that these gaps were permissible, and reached consensus regarding the needs assessment’s scope and objectives. Measures administered in the patient needs assessment survey included patient demographics, socio-economic status, SCD pain experience, pain interference with daily life (PROMIS29)7, Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me)8, emergency department utilization, negative experiences with ED providers, self-efficacy, care satisfaction, mental health status and barriers to care. The ED provider survey documented providers’ demographics, awareness of SCD VOC guidelines and perceived barriers to providing optimal care to people living with SCD. Institutional review boards at all sites approved of the needs assessment research activities.
Recruitment and survey administration
SCD Patient Participants:
Between March 2017 and March 2018 a cross-sectional, de-identified patient needs assessment survey was administered in English to a convenience sample of individuals living with SCD at seven of the eight SCDIC clinical centers: Augusta University, Duke University, Icahn School of Medicine at Mount Sinai, Medical University of South Carolina, St. Jude Children’s Research Hospital, USCF Benioff Children’s Hospital Oakland, and Washington University in St. Louis School of Medicine. Respondents were drawn from a sample of outpatients receiving care at the SCDIC clinical centers. The following inclusion and exclusion criteria were employed:
Inclusion criteria:
Diagnosed with or self-identified as having SCD;
Willing and able to answer survey questions.
Exclusion criteria:
Incarcerated or institutionalized at time of survey;
Unsure of their SCD status;
Under 18 years old without legal parent or guardian consent to participation.
Surveys were self-administered in one session using an electronic tablet or paper survey (with standby support from trained research staff members). Data were stored and managed by the data coordinating center using Research Electronic Data Capture (REDCap®). For patients not known to the system of care, a brief screening tool was used to ensure that the patient had SCD, was at least 18 years old or had guardian consent if younger. Survey administrators received crisis intervention training to address participants who experienced psychological distress while completing the survey.
ED Provider Participants:
Parallel to the patient survey, cross-sectional, de-identified ED provider surveys were manually or electronically self-administered via Research Electronic Data Capture (REDCap®) to a sample of Emergency Medicine physicians, advanced care providers, and registered nurses at five of the eight SCDIC clinical sites: Augusta University, Duke University, Icahn School of Medicine at Mount Sinai, Medical University of South Carolina, St. Jude Children’s Research Hospital, University of California San Francisco – Benioff Children’s Hospital Oakland and Washington University School of Medicine. Respondents had the option to record their contact information in order to request clarification or further information about the survey. The following inclusion and exclusion criteria were employed:
Inclusion criteria:
Physicians, Advanced Care Providers, Nurses and Ancillary staff (e.g., psychologists, social workers) practicing Primary Care, Emergency Medicine, Hospitalists, OB-GYN, Family Practice, Hematology, Oncology, Pediatrics.
Responded “Yes” to the screener question: “Do you primarily provide care through ED?”
Exclusion criteria:
Physicians practicing in sub-specialties not directly involved in the care of SCD: Neurology, Renal, Orthopedics, Pulmonary and Cardiology.
Responded “No” to the screener question: “Do you primarily provide care through ED?”
Analysis
Given the patient and provider needs assessments’ cross-sectional survey design, categorical variables were tabulated as percentages of respondents endorsing the response option, while continuous variables were summarized by mean and median values as appropriate. In reporting opinions documented on Likert scales, responses were dichotomized as “Strongly Agree / Agree” versus “Strongly Disagree / Disagree”. Tabulations were performed using SAS Version 9.4 (Cary, NC).
Results:
SCD Patients’ Experiences with ED Care
Five hundred and sixteen adolescents (n=93) and adults (n=354) living with SCD responded to the SCDIC needs assessment (69 patient respondents did not report their age). Among the respondents, 385 reported seeking ED care within the last 12 months. Table 1 documents the survey participants’ demographic characteristics and social determinants of health. Those who sought SCD-related ED care within the past 12 months had a median age of 29 (IQR: 22-35) and 56.6% were female. Thirty four percent reported their occupational status as disabled and 46.2% reported their annual household income as $15,000 or less. Respondents with ED use were more likely to report that their pain interfered with day-to-day activities and reported managing pain crises at home more frequently than non-ED users (Table 2).
Table 1.
Demographic characteristics and social determinants of health for SCDIC Patient Needs Assessment Respondents
| Sought SCD-related ED Care within the last 12 months1 (n=385) | Did not seek SCD-related ED care within the last 12 months (n=123) | Total2 (N=516) | |
|---|---|---|---|
| Age, Median (IQR) | 29 (22-35) | 23 (17-32) | 28 (20-34) |
| Sex, N (column %) | |||
| Male | 41.6% | 50.4% | 43.2% |
| Female | 56.6% | 48.8% | 54.7% |
| Don’t know/Prefer not to respond | 1.8% | 0.8% | 2.2% |
| SCD Genotype, N (column %) | |||
| Hb SS | 70.1% | 58.5% | 66.9% |
| Hb Sβ0 Thalassemia | 1.6% | 1.6% | 1.6% |
| Hb SC | 19.0% | 26.8% | 20.5% |
| Hb Sβ + Thalassemia | 3.4% | 7.3% | 4.3% |
| Other/Don’t know/Prefer not to respond2 | 6.0% | 5.7% | 6.8% |
| Race, N (column %) | |||
| Black/African American | 94.5% | 97.6% | 94.6% |
| Other race 3 | 3.2% | 0.8% | 2.7% |
| Don’t know/Prefer not to respond | 2.3% | 1.6% | 2.7% |
| Ethnicity, N (column %) | |||
| Non-Hispanic or Latino | 91.4% | 93.5% | 90.9% |
| Hispanic or Latino | 3.1% | 4.1% | 3.7% |
| Don’t know/Prefer not to respond | 5.5% | 2.4% | 5.4% |
| Highest level of education attained, N (column %) | |||
| Less than high school diploma/GED | 22.9% | 34.1% | 25.4% |
| High school diploma / GED | 22.6% | 19.5% | 22.1% |
| Some college, no degree | 26.8% | 14.6% | 23.4% |
| Associate degree or higher | 24.2% | 27.6% | 24.8% |
| Don’t know/Prefer not to respond | 3.6% | 4.1% | 4.3% |
| Occupational status, N (column %) | |||
| Disabled (permanent or temporary) | 34.0% | 8.9% | 27.9% |
| Employed (full time or part time) | 24.4% | 30.9% | 25.6% |
| Student | 19.2% | 30.9% | 21.7% |
| Not working, looking for a job | 9.1% | 19.5% | 11.6% |
| Not working, not looking for a job4 | 6.5% | 5.7% | 6.4% |
| Other/Prefer not to respond | 6.8% | 4.1% | 6.8% |
| Annual household income, N (column %) | |||
| Less than $15,000 | 46.2% | 32.5% | 43.0% |
| $15,000 - $29,000 | 17.1% | 12.2% | 15.9% |
| $30,000 - $49,000 | 11.2% | 11.4% | 11.0% |
| $50,000 - $79,000 | 7.0% | 11.4% | 7.9% |
| $85,000 + | 3.4% | 8.9% | 4.7% |
| Prefer not to respond / left blank | 15.1% | 23.6% | 17.4% |
| Health Insurance provider, N (column %) | |||
| Private Health Insurance | 12.5% | 25.2% | 15.7% |
| Medicare | 34.0% | 17.1% | 29.7% |
| Medicaid | 37.9% | 32.5% | 36.4% |
| Other 5 | 3.9% | 4.9% | 4.1% |
| No Coverage | 2.3% | 1.6% | 2.1% |
| Don’t know / Missing | 9.4% | 18.7% | 12.0% |
Affirmative response to “In the past 12 months, did you go to an emergency room for any sickle cell care you needed right away?” OR responded “1 visit, ” “2 visits, ” “3 visits ”, or “4 or more visits ” to “In the past 12 months, how many times did you go to the emergency room because of a pain attack (crisis)? ”
Eight respondents did not provide any information on their ED utilization.
Affirmative response to “White,” “Asian,” “Pacific Islander,” “Native American/Alaskan Native,” or “Other”
Affirmative response to “Only temporarily laid off, sick leave or maternity leave, ” “Keeping house, ” or “Retired.”
Affirmative response to “CHIP, ” “Military Health Care,” “State Sponsored Plan ” or “Other. ”
Table 2.
Pain interference among SCDIC Patient Needs Assessment Respondents
| Sought SCD-related ED Care within the last 12 months1 (n=385) | Did not seek SCD-related ED care within the last 12 months (n=123) | Total2 (N=516) | |
|---|---|---|---|
| In the last 6 months, have you had a pain episode severe enough to keep you from doing your usual daily activities, but without being seen by a doctor or a nurse? N (column %) | |||
| Yes | 83.4% | 50.4% | 74.6% |
| No | 15.3% | 49.6% | 23.4% |
| Don’t know/Prefer not to respond2 | 1.3% | 0.0% | 1.9% |
| Pain interference score, N (column %) | |||
| No Interference | 8.8% | 35.8% | 15.3% |
| Lowest third | 24.9% | 39.0% | 27.9% |
| Middle third | 32.2% | 15.4% | 27.9% |
| Highest third | 34.0% | 9.8% | 27.9% |
| Don’t know/Prefer not to respond | 0% | 0% | 1.0% |
Affirmative response to “In the past 12 months, did you go to an emergency room for any sickle cell care you needed right away? ” OR responded “1 visit, ” “2 visits, ” “3 visits ”, or “4 or more visits ” to “In the past 12 months, how many times did you go to the emergency room because of a pain attack (crisis)? ”
Eight respondents did not provide any information on their ED utilization.
Sixty-six percent of patient respondents reported delaying or avoiding going to the ED in the last 12 months (Table 2). Those who sought SCD-related ED care within the last 12 months were more likely to report delaying visits than those who did not use emergency services (69.6% vs. 47.4%). Perceived health insurance issues were reported as a key barrier among 17.5% of ED users who delayed or avoided care as opposed to 0% among ED non-users who delayed/avoided care. The importance of unpleasant ED experiences in respondents’ decision to avoid care was comparable between ED users versus non-users.
The SCD patient survey examined several areas of the ED experienced by people living with SCD. Overall satisfaction with ED care was mixed, with 51.2% indicating always or usually being satisfied with their ED experience. Fifty one percent of patients reported that ED doctors and nurses believed that they had very bad sickle cell pain only “some,” “a little bit,” or “none” of the time. Slightly more than half (53.8%) of respondents indicated not getting ED care quickly enough. Thirty four percent reported their longest ED wait time for SCD-related care was “two hours or more”, followed by “more than 1 hour but less than 2 hours” (18.8%), “16 minutes to 1 hour” (23.1%), “5 to 15 minutes” (15.6%) and “less than 5 minutes” (5.9%). Forty-six percent believed ED doctors did not care about them, and 35.0% believed that ED nurses did not care about them. Interestingly, patients reporting not having an outpatient doctor or nurse had comparable frequency of ED visits for SCD pain as those reporting having an outpatient doctor or nurse.
ED Provider Survey
Two hundred forty-three ED-based healthcare providers responded to the survey. Table 3 documents the surveyed providers’ demographic characteristics. Given that the demographics section was optional, some questions in this portion were unanswered by many ED providers.. Most providers were white (71.2%) physicians (51.4%), aged 31-50 years old (40.3%), working in urban environments (35.4%) and in practice for one to five years (25.5%). While 98.1% of providers “strongly agreed” or “agreed” with the statements “I have the knowledge to provide care to person[s] with SCD,” and “I have the training to provide care to person[s] with SCD” (95.2%), only 23.6% reported awareness of the NHLBI’s guidelines for treating VOC. Penetration of local ED VOC protocols was limited, with only 55.6% of respondents confirming that their ED has a standard protocol for treating sickle cell pain or uses individualized dosing protocols. Sixty percent of respondents endorsed the statement that their ED workflow was conducive to providing high quality care for sickle cell pain crises. Providers tended to “strongly agree” or “agree” that they had administrative support (86.3%) and access to pain medications (96.2%), but were limited in their ability to arrange follow up visits with a SCD specialist (31.5%), primary care provider (34.7%), or case manager (47.4%). Seventy-two percent of providers reported their ED had adequate numbers of nurses, while 88.2% reported an adequate number of physicians to provide good pain management to persons with SCD.
Table 3.
Demographic characteristics of SCDIC Provider Needs Assessment Survey Respondents
| N = 243, (100%) | |
|---|---|
| Primarily provides care through ED | |
| Yes | 100% |
| Age | |
| 18-30 years | 16.0% |
| 31-50 years | 40.3% |
| 51-70 years | 10.7% |
| Don’t know/Prefer not to respond | 2.9% |
| Missing | 30.0% |
| Gender | |
| Female | 39.5% |
| Male | 39.9% |
| Don’t know/Prefer not to respond | 3.7% |
| Missing | 16.9% |
| Race | |
| Asian | 3.3% |
| Black/African American | 1.6% |
| White | 71.2% |
| Other1 | 1.6% |
| Don’t know/Prefer not to respond | 7.4% |
| Missing | 14.8% |
| Main practice setting | |
| Rural | 3.7% |
| Urban | 35.4% |
| Suburban | 11.9% |
| Don’t know/Prefer not to respond | 1.2% |
| Missing | 47.7% |
| Years in clinical practice | |
| < 1 year | 2.1% |
| 1-5 years | 25.5% |
| 6-10 years | 16.0% |
| 11-20 years | 25.1% |
| 21-30 years | 7.8% |
| 31-40 years | 2.1% |
| Missing | 21.4% |
| Main area of practice | |
| Emergency Medicine | 34.6% |
| Internal Medicine | 0.4% |
| Pediatrics | 1.6% |
| Other | 0.4% |
| Missing | 63.0% |
| Provider type | |
| Medical doctor | 51.4% |
| Nurse Practitioner | 0.0% |
| Physician’s assistant | 7.4% |
| Registered nurse | 24.7% |
| Other | 0.8% |
| Don’t know/Prefer not to respond | 1.6% |
| Missing | 14.0% |
Affirmative response to “American Indian or Alaskan Native ”, “Native Hawaiian or Other Pacific Islander ”, or “Other. ”
While patients identified insurance issues as a factor that prevented them from seeking acute care when needed, 87.2% of providers agreed with the statement “A lack of insurance, or being under-insured, does not affect my ability to provide good care.” Instead, when providers were asked what are barriers in their ED to caring for individuals with sickle cell disease, the most cited responses were “the opioid epidemic” (62.1%), “patient behavior” (60.9%), “overcrowding” (58.0%), “concern about addiction” (47.3%) and “implicit bias” (37.0%).
Limitations
While this study unveiled some important barriers to addressing sickle cell patients’ needs, there were limitations. The needs assessments were administered to convenience samples of patients with SCD attending their clinic appointments and available providers at each site (large academic medical centers) who opted to respond to the survey. Consequently, these results may not be generalizable to patients without a provider for their sickle cell care, to ED providers less involved in SCD care, and to providers working outside of large academic medical centers. Furthermore, the collected data were self-reported. Because many questions asked respondents to reflect on the past year and estimate visit frequency and challenges experienced, these results are subject to recall and attribution bias. These limitations hinder the study’s external validity.
Nonetheless, the study has two key strengths. First, it samples from multiple sites across the U.S., providing insight into shared experiences of people living with SCD in different geographic regions. Second, the use of instruments previously validated on people living with SCD allows for comparisons to other SCD cohorts.
Discussion
This study evaluated the perceptions of patients with SCD and providers across seven geographically diverse sites using a validated needs assessment survey to understand the ED experience and current limitations in disease management in acute care settings. The responses highlighted several barriers to optimal care in the ED including healthcare provider knowledge and attitudes, institutional workflow and resource limitations and individual patient characteristics.
One such barrier might be that patients with SCD feel stigmatized for presenting frequently with painful crises that require stronger pain medications at higher doses than some providers are comfortable administering. This study demonstrated that many respondents believe doctors and nurses doubted their pain; some providers acknowledged the impact of implicit bias and stigma around sickle cell as well as a concern about addiction. Patient awareness of stigmatization has been well documented in previous studies as “opioid seeking”.9–11 This awareness of being labelled as malingering can affect self-confidence and disease perception. Patients feeling higher levels of stigma noted increased levels of fatigue, anger, anxiety and depression.12 The findings of this study were confirmed with our survey that showed some of the barriers to patient care were that they were in pain, tired, fearful and angry or frustrated. This is further exacerbated by the well documented racial and ethnic bias in the treatment of pain, with minority groups receiving less and delayed pain medication compared to their white counterparts.13, 14 Moreover, providers surveyed were primarily white in stark contrast to their primarily black patient population. Prior research has already demonstrated that white physicians may have an implicit bias favoring white individuals over their black counterparts.15 This is of immense consequence to patients with SCD who are primarily black and is important to the overall delivery of healthcare. In part, one could speculate that because pain is a subjective measurement, it is challenging for patients with SCD to get providers to fully understand their experience.
In line with existing literature, this needs assessment also found that Medicare and Medicaid patients tended to utilize the ED more than those with private insurance. It is possible that this is secondary to their inability to access their primary sickle cell provider or refill home pain medications. Providers in this study also noted difficulty with securing primary care appointments or specialist appointments as follow up for many patients with SCD. Previous research has indicated that patients insured by Medicaid have more barriers to timely primary care appointments than those with private insurance and those with an increased number of barriers subsequently had higher ED utilization.16 Similarly, this could be directly associated with the finding that patients with higher household income had less ED visits, possibly because they had private insurance and could secure an appointment with their sickle cell specialist or refill their medication. Alternatively, it may be that patients with fewer VOCs are better able to obtain and retain employment and therefore acquire private insurance. Regardless of the causal directionality, this could be important to identify at-risk patients to minimize their barriers to care in the future. For these patients, our results emphasize the importance of social determinants of health in managing patients with SCD.
Much is already known about how to best manage individuals with SCD as synthesized in the NHLBI 2014 Evidence-Based Management of Sickle Cell Disease expert panel report.17 Unfortunately, penetration of these best practices for SCD care is critically low as evidenced by the needs assessment’s findings. The discordance between providers’ assessment of their own knowledge and awareness of standardized practices is concerning. This may be because hospitals have protocoled care plans for these patients, they are using other resources based on NHLBI recommendations or because providers are unaware that these guidelines exist. Except for one site with less than five provider responses, we noted that within each site there was disagreement among respondents as to whether their own ED had a VOC treatment protocol. Unfamiliarity with national guidelines and local protocols may cause variations and undertreatment of patients with SCD in the ED, further exacerbating patients’ dissatisfaction with their care. Increasing the number of patients connected to SCD experts who prescribe hydroxyurea is an effective way to decrease pain crises as this medication has been proven to reduce the number of VOCs by up to 50%.18
Future studies may assess opportunities for intervention by collecting data on specific known barriers to healthcare (e.g. access to primary care, transportation, sense of stigmatization etc.) from patients with SCD who are visiting the ED frequently. These findings will also inform the interventions tested in the implementation science studies currently being planned by the SCDIC to improve ED experiences and overall outcomes.
In summary, our needs assessment documented the obstacles that patients with SCD face in managing their disease, specifically when coming to the ED. Challenges include stigmatization, varying provider knowledge with national guidelines, access to care and support system burden. It is hoped that these data and the future SCDIC studies will facilitate recognition and elimination of barriers to providing high quality care for patients with sickle cell disease in the Emergency Department.
Supplementary Material
Appendix 1: Sickle Cell Disease Implementation Consortium (SCDIC) Members
Appendix 2: Sickle Cell Disease Implementation Consortium Needs Assessment: Patient Basic Survey
Table 4.
Key Findings - SCDIC ED Provider Needs Assessment
| Penetration of NHLBI SCD and local SCD Guidelines | ||
|---|---|---|
| Yes (%) | No (%) | |
| Does your ED have protocol for treating sickle cell pain? | 54.6% | 35.9% |
| Does your ED use individualized dosing protocols to treat sickle cell pain? | 55.6% | 31.6% |
| Are you aware of the NHLBI recommendations for the treatment of VOC? | 23.6% | 75.1% |
| Knowledge to treat SCD VOC | ||
| Strongly Agree / Agree (%) | Strongly Disagree / Disagree (%) | |
| I have the knowledge to provide care to persons with SCD | 98.1% | 1.9% |
| I have the training to deliver care to persons with SCD | 95.2% | 4.3% |
| I have the administrative support I need to treat patients with SCD. | 86.3% | 7.1% |
| I have access to medications I need to treat pain in individuals with SCD. | 96.2% | 1.9% |
| ED staffing, workflow and resources | ||
| Strongly Agree / Agree (%) | Strongly Disagree / Disagree (%) | |
| I work in an ED with sufficient nurse staffing to provide good pain management to persons with SCD | 72.2% | 26.9% |
| I work in an ED with sufficient physician/provider staffing to provide good pain management to persons with SCD. | 88.2% | 11.3% |
| Nursing staff ratios allow our ED to provide safe care | 70.3% | 27.8% |
| Nursing staffing allows our ED to provide high-quality care | 70.4% | 28.2% |
| A lack of insurance, or being under insured does not affect my ability to provide good care | 87.3% | 7.0% |
| The workflow in our ED is conducive to providing high quality care for sickle cell pain crises | 59.5% | 37.6% |
| Accessibility of Post-ED visit resources | ||
| Strongly Agree / Agree (%) | Strongly Disagree / Disagree (%) | |
| I am able to make a follow-up appointment with a sickle cell specialist following discharge | 31.5% | 54.0% |
| I am able to make a follow-up appointment with a primary care provider following discharge. | 34.7% | 53.1% |
| I am able to refer patients to a case management program upon discharge | 47.4% | 35.2% |
Percentages may not add up to 100% as some providers elected “Don’t know/Prefer not to respond”
Acknowledgement
The SCD Implementation Consortium has been supported by US Federal Government cooperative agreements U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, and U01HL134042 from the National Heart, Lung, and Blood Institute and the National Institute on Minority Health and Health Disparities (Bethesda, MD).
Footnotes
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Appendix 1: Sickle Cell Disease Implementation Consortium (SCDIC) Members
Appendix 2: Sickle Cell Disease Implementation Consortium Needs Assessment: Patient Basic Survey