RESEARCH ARTICLE
Barriers and facilitators to care for individuals
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Citation: Masese RV, Bulgin D, Douglas C, Shah N,
Tanabe P (2019) Barriers and facilitators to care for
individuals with sickle cell disease in central North
Carolina: The emergency department providers’
perspective. PLoS ONE 14(5): e0216414. https://
doi.org/10.1371/journal.pone.0216414
Editor: Lars-Peter Kamolz, Medical University Graz,
AUSTRIA
Received: February 6, 2019
Accepted: April 21, 2019
Published: May 7, 2019
Copyright: © 2019 Masese et al. This is an open
access article distributed under the terms of the
Creative Commons Attribution License, which
permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Data Availability Statement: We have ethical
restrictions about openly releasing the data set to
the public as the nature of the data set would result
in loss of participant anonymity. The ethical
restrictions were imposed by the Sickle Cell
Disease Implementation Consortium (SCDIC).
However, data set requests can be made to SCDIC
and their data coordinating center at RTI
international. Requests will be reviewed by the
SCDIC Publications Committee. Data set requests
can be sent to SCDIC at scdic-publications-
PLOS ONE | https://doi.org/10.1371/journal.pone.0216414 May 7, 2019
with sickle cell disease in central North
Carolina: The emergency department
providers’ perspective
Rita Vanessa Masese ID1☯*, Dominique Bulgin1☯, Christian Douglas2☯, Nirmish Shah3☯,
Paula Tanabe1☯
1 Duke University School of Nursing, Durham, North Carolina, United States of America, 2 Duke University
Office of Clinical Research, Durham, North Carolina, United States of America, 3 Duke University Medical
Center, Durham, North Carolina, United States of America
☯ These authors contributed equally to this work.
* rita.masese@duke.edu, ritamasese@gmail.com
Abstract
Background
Sickle cell disease (SCD) is an inherited blood disorder associated with acute pain crisis and
other complications that lead to frequent emergency department (ED) visits. To improve out-
comes, the National Heart, Lung and Blood Institute (NHLBI) published recommendations
for management of acute pain crisis. NHLBI also funded eight centers across the United
States to participate in the Sickle Cell Disease Implementation Consortium. This six-year
effort consists of two phases. Phase one involved conducting needs assessments of barri-
ers and facilitators to SCD care. The aim of this study was to describe challenges and facili-
tators to caring for SCD from the perspective of ED providers in central North Carolina (NC).
Methods and findings
We conducted a needs assessment survey with ED providers throughout NC. We also con-
ducted focus groups and an interview with ED providers from three healthcare facilities in
central NC. One hundred and eleven surveys (60.6% physicians, 26% registered nurses,
13.5% physician assistants) were completed and 13 providers participated in 3 focus groups
and 1 interview. Slightly more than half (50. 4%) utilized individualized dosing protocols to
treat sickle cell pain. Only 32.4% of the providers were aware of the NHLBI SCD recommen-
dations. Barriers to care from the survey included: patient behavior (67.57%), the opioid epi-
demic (67.57%), overcrowding (64.86%), and concern about addiction (49.55%). Perceived
barriers to care identified in the focus groups and interview included: high patient volumes,
lack of SCD care protocols, poor communication among providers and stigma. Facilitators
to care included: individualized pain plans, comfort prescribing opioids and electronic medi-
cal records.
1 / 14

subcommittee@rtiresearch.org or +1 301-230-
4674.
Funding: The study is part of the Sickle Cell
Disease Implementation Consortium which has
been supported by US Federal Government
cooperative agreements HL133948, HL133964,
HL133990, HL133996, HL133994, HL133997,
HL134004, HL134007, and HL134042 from the
National Heart Lung and Blood Institute and the
National Institute on Minority Health and Health
Disparities (Bethesda, MD).
Competing interests: The authors have declared
that no competing interests exist.
PLOS ONE | https://doi.org/10.1371/journal.pone.0216414 May 7, 2019
The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care
Conclusion
SCD care is influenced by many factors. Our results illuminate the need for increased use of
the NHLBI SCD recommendations, individualized pain protocols, and use of electronic med-
ical records and other care-interventions, specifically geared towards improving provider
knowledge and mitigating provider bias.
Introduction
Sickle cell disease (SCD) is an inherited blood disorder with a predominant prevalence among
the African-American population in the United States and is associated with several co-mor-
bidities, including stroke, renal failure, and sepsis [1]. The median lifespan is 42 and 48 years
among males and females respectively [2]. Individuals also experience both acute and chronic
pain conditions. The complexity of sickle cell disease (SCD) ultimately results in frequent hos-
pital admissions and emergency department (ED) visits.
In 2006 there were over 200,000 emergency department (ED) visits for sickle cell disease
(SCD); pain is noted to be the most common reason for emergency department (ED) visits [3].
One of every 4 ED visits by an individual with SCD led to a hospital admission, resulting in a
high associated cost [4]. In 2006 the estimated total of 232,382 ED visits and 68,410 hospitaliza-
tions from the ED, accounted for an estimated $2.4 billion dollars [3]. When compared to
congestive heart failure during 2006, the number of hospital admissions per 100 persons with
SCD was significantly higher for SCD (68.4 vs. 17.3) as well as the charges per 100 patients
($1.5 million for SCD, vs. $500,000 for congestive heart failure) [3]. In 2010, SCD was associ-
ated with the highest 30-day re-admission rate among all diagnoses, 31.9% [5].
In an attempt to provide guidance to SCD healthcare providers, in 2014 the National Heart,
Lung and Blood Institute (NHLBI) published recommendations for the treatment of SCD [1].
The document included 17 recommendations for treatment of painful vaso-occlusive episodes.
Specific recommendations included assigning a triage score of level 2, administration of opi-
oids within 60 minutes of arrival, use of parenteral opioids, and use of individualized analgesic
dosing protocols whenever possible. However, there are barriers to the implementation of
these guidelines leading to frustration with the ED by both patients and healthcare providers
[6–8].
In an effort to improve outcomes for persons with SCD, the National Heart, Lung and
Blood Institute (NHLBI) funded eight centers across the US to participate in the Sickle Cell
Disease Implementation Consortium (SCDIC, U01HL133964). This six-year effort consists of
two phases. During Phase 1, each site conducted a needs assessment of barriers to care from
the patients’, primary care providers’, SCD specialists’, and ED providers’ perspectives. In this
paper, we report the results of the needs assessment (surveys and focus groups) of facilitators
and barriers to care for patients with SCD in North Carolina, from the perspective of emer-
gency medicine providers.
The purpose of the needs assessment was to develop a more complete understanding of
facilitators and barriers to care for individuals with SCD from the perspective of ED providers,
as well as to assess current adherence and knowledge of the National Heart, Lung and Blood
Institute (NHLBI) recommendations for treating vaso-occlusive episodes. This data will be
used to develop interventions for phase two, which aims to improve ED management of
SCD and adherence to the NHLBI recommendations for the treatment of vaso-occlusive
episodes.
2 / 14
 The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care

Methods
Study design
A combination of needs assessment surveys, focus groups, and an individual interview were
used. Institutional review board approval from Duke University was obtained prior to data col-
lection (Protocol ID: Pro00073506). Participation in the study was voluntary and participants
could withdraw from the study at any time. A waiver of written consent was provided for survey
completion. Focus group and interview participants signed an informed written consent. Per-
sonal identifying information was not collected in order to preserve participant confidentiality.

Study sample and setting

Eligibility criteria included: 1) licensure as a physician, registered nurse or physician assistant,
2) current employment in an ED, and 3) provision of care to persons with SCD. Survey partici-
pants were recruited via emails sent from their hospital administrators. To encourage gener-
alizability of the responses, the study team worked with the North Carolina Emergency Nurses
Association. An electronic link to the survey was displayed on their website. The organization
also sent the link to the email list serve for their members, thus resulting in responses from
across North Carolina.
Focus group and interview participants were purposefully recruited from three hospitals
with high volumes of SCD patients in North Carolina. To increase generalizability, two of the
hospital sites were associated with large comprehensive SCD care centers, the other site was
not. For the purposes of this study, the site not associated with a comprehensive SCD care cen-
ter was referred to as hospital A; the other two sites were referred to as hospital B and C. Pro-
viders interested in the study contacted the study team to schedule participation. Interview
participants were invited to complete the needs assessment survey at the time of the focus
group or individual interview.

Data collection
Surveys. The needs assessment survey questions were developed by members of the Sickle
Cell Disease Implementation Consortium’s needs assessment committee. The committee
included at least one member from the 8 participating sites with leadership from the Research
Triangle Institute, the data coordinating center for the Sickle Cell Disease Implementation
Consortium. The survey was divided into four sections: 1) demographic and practice charac-
teristics, 2) facilitators to treatment of SCD (n = 13 items), 3) barriers to treatment, (14 items
and “other), and 4) questions about ED vaso-occlusive episode treatment and opioid prescrib-
ing practices (n = 4). Each facilitator item was endorsed using a 4 point Likert scale (strongly
disagree, disagree, agree or strongly agree). Responses were re-coded for analysis (strongly dis-
agree/disagree or agree/strongly agree). The overall mean (SD) was also calculated per item.
Participants selected all barriers that were relevant to their practice and answered each of the
items about ED vaso-occlusive episode treatment and prescribing practices (use of ED vaso-
occlusive episode protocols, use of individualized vaso-occlusive episode protocols, awareness
of NHLBI recommendations and whether or not they prescribe Schedule II opioids for SCD
patients at discharge). The survey contained novel questions, validated instruments and items
from previous literature on barriers to SCD. Personal identifying information was not col-
lected in order to preserve participant confidentiality and encourage responses. The survey
was administered electronically from June to September 2017.
Interviews. Focus groups were conducted from August to October 2017. Each session
lasted approximately 90 minutes and was led by the principal and co-investigators who have

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 The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care

extensive training in qualitative research methods. The study utilized a semi-structured inter-
view guide with broad opening questions and more specific follow-up probes. The questions
were developed by the same members of the Sickle Cell Disease Implementation Consortium’s
needs assessment group that developed the surveys. The guide explored barriers and facilita-
tors to SCD management, reasons for SCD patient ED visit, knowledge of SCD management,
comfort with opioid prescriptions and SCD co-management. Data collection continued until
data saturation, where no new insights could be obtained [9]. Interviews were audio-recorded
and transcribed verbatim. Interview participants were compensated $30. There was no com-
pensation for completing the needs assessment surveys.
Data analysis. Quantitative data from the needs assessment survey were entered into a
Research Electronic Data Capture (REDCap) database. SAS statistical software (version 9.4)
was used to conduct descriptive analyses.
QSR NVivo 11TM software was used to code, organize and manage qualitative data. Codes
were developed deductively from topics in the interview guide and inductively from the con-
tent in the transcripts. Codes were compiled into a codebook with definitions, inclusion and
exclusion criteria. The codebook was reviewed by the research team for agreement before
being applied to the transcripts. Two members of the research team independently coded por-
tions of the transcripts, discussed and compared coding decisions. Disagreements were
resolved through repeated discussions until consensus was achieved. Agreement ranged from
92% to 100% with a weighted kappa value of 0.98. After completion of coding, the coded texts
were arranged into categories and subcategories based on codes that related to each other. The
salience of particular codes was determined by the frequency of application, similarities and
differences among study participants.

Results
Participant demographic data
The needs assessment survey was completed by 111 ED providers (demographic and practice
characteristics are summarized in Table 1). Majority of participants who reported practicing
in an urban setting were medical doctors. 13 ED providers from the 3 different care settings in
North Carolina participated in 3 focus groups and 1 interview. Participants reported providing
care to approximately 1 to 2 SCD patients per week who were mostly adults. The most com-
mon reported reason for SCD patient visit was pain crisis. Other reasons for presentation
included stroke, acute chest syndrome, priapism, splenic sequestration, and fever.

Survey findings
Table 2 presents survey responses. In general, participants reported good infrastructure and
support to provide care to persons with SCD with the exception of workflow. Participants also
reported difficulty making referrals to both SCD specialists and primary care providers. Fig 1
reports the percentages of identified barriers to care. The most frequent barriers were patient
behavior (67.57%), the opioid epidemic (67.57%) and ED overcrowding (64.86%). Table 3
reports findings related to use of NHLBI recommendations. A majority (66.7%) of ED provid-
ers reported not being aware of the NHLBI recommendations for the treatment of SCD.

Focus group and interview findings

Analysis of qualitative data from the three healthcare facilities (Hospital A, B and C) revealed
similar and overlapping themes concerning barriers and facilitators to care of persons with
SCD in the ED. Participants also made several recommendations to improve care.

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 The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care

Table 1. Demographic and practice characteristics (surveys, focus groups and interview).
Characteristics Surveys (n = 111) Focus Groups/Interview
(n = 13)
Age, mean (sd) 37.66 (8.95) 32.67 (14.73)
Missing, n 34 0
Sex, n (%)
Female 52 (52.0) 9 (69.2)
Male 48 (48.0) 4 (30.8)
Missing, n 11
Race, n (%)
White 86 (89.6) 9 (69.2)
Black/African American 3 (3.1) 1 (7.7)
Asian 6 (6.3) 2 (15.4)
Other 1 (1.0)a 1 (7.7)b
Missing, n 15
Years of Practice, mean (sd) 10.75 (8.01) 11.54 (13.42)
Missing, n 10 1
Specialty type, n (%)
MD 63 (60.6) 6 (50.0)
PA 14 (13.5) 2 (16.7)
RN 27 (26.0) 4 (33.3)
Missing, n 7 1
Urban practice setting, n (%)
Rural 9 (8.7) 0 (0.0)
Urban 67 (65.0) 10 (83.3)
Suburban 27 (26.2) 2 (16.7)
Missing, n 8 1

Missing, participants who provided no response to the survey item; N, total number.
a
1 provider identified as Other (Pacific Islander).
b
1 provider identified as Other (multiple races).

https://doi.org/10.1371/journal.pone.0216414.t001

Barriers to care. Barriers to care reported during the interviews included: 1) ED patient
volume; 2) lack of SCD care protocols; 3) poor communication among providers; and 4)
stigma and bias.
High patient volume and overcrowding of the ED was identified as a significant barrier to
care at all the sites. Participants reported that due to the high volumes they tended to focus
more on patients with high triage levels, limiting their ability to address and assess SCD
patients in a timely manner. Overcrowding in the ED was compounded by constraints such as
time, inadequate staffing, or lack of resources to treat SCD pain.

“ED volume as a whole, and when we have fifty people in the waiting room as we often do,
although I put the order in for every 20 minutes as needed, I’m sure that it’s often the actual
amount of time it takes for them to get that medicine is perhaps even double. The same in the
pods. Our nurses generally will have 4 patients each and if one of their patients is very ill then
you can imagine they’re not able to get to that patient with sickle cell’s bedside as quickly as of
course we would want to, to address their pain and assess it more frequently as we should.”
(Participant 7, Hospital B, MD)

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 The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care

Table 2. Survey results on factors influencing care provision in the emergency department.
Barriers to care Disagree/ Agree/ Mean (sd) Missing, n
Strongly Strongly
Disagree Agree
N (%) N (%)
I have the knowledge to provide care to persons with SCD. 2 (1.8) 109 (98.2) 3.5 (0.54) 0
MD 1 (1.6) 62 (98.4) 3.6 (0.52) 0
PA 0 (0.0) 14 (100.0) 3.4 (0.50) 0
RN 0 (0.0) 27 (100.0) 3.4 (0.50) 0
Missing 1 (14.3) 6 (85.7) 3.0 (0.58) 0
I have the training to deliver care to the person with SCD. 4 (3.6) 106 (96.4) 3.5 (0.57) 1
MD 1 (1.6) 62 (98.4) 3.6 (0.51) 0
PA 0 (0.0) 14 (100.0) 3.4 (0.51) 0
RN 1 (3.8) 25 (96.2) 3.4 (0.57) 1
Missing 2 (28.6) 5 (71.4) 3.0 (0.82) 0
I have the administrative support I need to treat patients with SCD. 2 (2.0) 100 (98.0) 3.5 (0.57) 9
MD 0 (0.0) 58 (100.0) 3.6 (0.50) 5
PA 0 (0.0) 14 (100.0) 3.4 (0.51) 0
RN 2 (8.3) 22 991.7) 3.2 (0.74) 3
Missing 0 (0.0) 6 (100.0) 3.3 (0.52) 1
I have access to medications I need to treat pain in individuals with SCD. 2 (1.8) 106 (98.1) 3.6 (0.53) 3
MD 0 (0.0) 60 (100.0) 3.7 (0.47) 3
PA 0 (0.0) 14 (100.0) 3.4 (0.51) 0
RN 2 (7.4) 25 (92.6) 3.4 (0.64) 0
Missing 0 (0.0) 7 (100.0) 3.3 (0.49) 0
I am able to make a follow-up appointment with a sickle cell specialist following discharge. 58 (59.8) 39 (40.2) 2.3 (0.83) 14
MD 31 (51.7) 29 (48.3) 2.5 (0.81) 3
PA 7 (58.3) 5 (41.7) 2.3 (0.89) 2
RN 17 (80.9) 4 (19.1) 2.0 (0.74) 6
Missing 3 (75.0) 1 (25.0) 1.8 (0.96) 3
I am able to make a follow-up appointment with a primary care provider following discharge. 57 (57.0) 43 (43.0) 2.4 (0.84) 11
MD 32 (51.6) 30 (48.4) 2.5 (0.80) 1
PA 6 (50.0) 6 (50.0) 2.5 (0.80) 2
RN 16 (76.2) 5 (23.8) 2.0 (0.80) 6
Missing 3 (60.0) 2 (40.0) 2.2 (1.30) 2
I am able to refer patients to a case management program upon discharge. 32 (33.3) 64 (66.7) 2.8 (0.89) 15
MD 14 (24.1) 44 (75.9) 3.0 (0.85) 5
PA 4 (30.8) 9 (69.2) 2.7 (1.11) 1
RN 12 (60.0) 8 (40.0) 2.2 (0.72) 7
Missing 2 (40.) 3 (60.0) 2.6 (0.55) 2
I work in an ED with sufficient nurse staffing to provide good pain management to persons with SCD. 20 (18.2) 90 (81.8) 3.1 (0.69) 1
MD 8 (12.9) 54 (87.1) 3.2 (0.70) 1
PA 2 (14.3) 12 (85.7) 3.1 (0.62) 0
RN 9 (33.3) 18 (66.7) 2.8 (0.72) 0
Missing 1 (14.3) 6 (85.7) 2.9 (0.38) 0
I work in an ED with sufficient physician/provider staffing to provide good pain management to 10 (9.1) 100 (90.9) 3.2 (0.63) 1
persons with SCD.
MD 2 (3.2) 61 (96.8) 3.4 (0.55) 0
PA 0 (0.0) 13 (100.0) 3.3 (0.48) 1
RN 7 (25.9) 20 (74.1) 2.9 (0.78) 0
(Continued )

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 The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care

Table 2. (Continued)

Barriers to care Disagree/ Agree/ Mean (sd) Missing, n

Strongly Strongly
Disagree Agree
N (%) N (%)
Missing 1 (14.3) 6 (85.7) 2.9 (0.38) 0
Nursing staff ratios allow our ED to provide safe care. 21 (19.4) 87 (80.6) 3.0 (0.68) 3
MD 10 (16.4) 51 (83.6) 3.1 (0.72) 2
PA 2 (15.4) 11 (84.6) 2.9 (0.49) 1
RN 8 (29.6) 19 (70.4) 2.9 (0.70) 0
Missing 1 (14.3) 6 (85.7) 2.9 (0.38) 0
Our nursing staffing allows our ED to provide high-quality care. 20 (18.2) 90 (81.8) 3.1 (0.73) 1
MD 8 (12.9) 54 (87.1) 3.3 (0.73) 1
PA 3 (21.4) 11 (78.6) 2.9 (0.62) 0
RN 8 (29.7)) 19 (70.4) 2.9 (0.73) 0
Missing 1 (14.3) 6 (85.7) 2.7 (0.76) 0
A lack of insurance, or being under insured does not affect my ability to provide good care. 10 (9.3) 97 (90.7) 3.4 (0.72) 4
MD 9 (15.0) 51 (85.0) 3.4 (0.82) 3
PA 0 (0.0) 14 (100.0) 3.7 (0.47) 0
RN 1 (3.7) 26 (96.3) 3.4 (0.58) 0
Missing 0 (0.0) 6 (100.0) 3.5 (0.55) 1
The workflow in our ED is conducive to proving high quality care for sickle cell pain crises. 33 (30.8) 74 (69.2) 2.8 (0.75) 4
MD 15 (25.0) 45 (75.0) 2.9 (0.77) 3
PA 5 (35.7) 9 (64.3) 2.7 (0.61) 0
RN 11 (40.7) 16 (59.3) 2.7 (0.81) 0
Missing 2 (33.3) 4 (66.7) 2.7 (0.52) 1

Missing, participants who provided no response to the survey item; N, total number.

https://doi.org/10.1371/journal.pone.0216414.t002

Participants had varied responses about the types of pain management and analgesic they
offered. Variation in pain management was attributed to a lack of standardized protocols and
individualized pain plans in the ED. The healthcare system associated with Hospital A had a
“Dilaudid free” (Hydromorphone free) policy that acted as a barrier to care by limiting or
delaying access to pain medications. One participant remarked, “I mean some of the Dilaudid
free EDs it just it ends up, I think you can still prescribe it but it’s just very difficult and like the
nurse has to get special approval. But if you’re in, you know, someone’s demanding Dilaudid and
they’re in one of our facilities that has a Dilaudid free ED then we’re just delaying their treatment
of pain.” (Participant 1, Hospital A, MD)
Participants used a multidisciplinary approach to managing SCD patients, including relying
on clinical notes and care plans crafted by the patient’s hematologists or pain specialists. Par-
ticipants reported reaching out to the specialist if patients were not responding to standard
therapy. However, most of the patients presented over the weekends and at night making it
difficult for the participants to contact their hematologist or primary care physician. Inade-
quate communication with primary care providers also limited the participants’ ability to
establish follow-up appointments for their patients. Lack of follow-up appointments with pri-
mary care physicians and hematologists perpetuated a cycle of patients receiving their care pri-
marily in the ED.
Participants expressed concerns that patients may be drug seeking, and reported that that
perception influenced the care they provided. They were aware of how stigmatizing thoughts

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 The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care

Fig 1. Survey identified barriers to care in the emergency department.

https://doi.org/10.1371/journal.pone.0216414.g001

impacted the care they provided. Participants from Hospital A used language commonly asso-
ciated with bias and negative attitudes, such as “frequent flyers’ and “sickler.” One participant
mentioned a discrepancy in the treatment of SCD pain compared to pain caused by other ill-
nesses, revealing that providers may be more willing to offer opioids to patients with cancer or
other co-morbidities than to patients with SCD.

“I’ve had patients where you know I’m like I’m going to go see such and such which may be
known to most of the staff that’s in the ER and I’ve heard the commentary of I just can’t stand
them or you know just something derogatory. There’s one patient in particular I can think of
who’s actually extremely polite but does present very, very, very often and I can just recall a
few people telling me just how much they’re aggravated by that patient and I think people for-
get, just as nurses, that we have to examine ourselves and regulate our own biases before we
go into the rooms because it’s not really my position to judge but I think that’s often forgotten.”
(Participant 10, Hospital C, RN)

Facilitators to care. Reported facilitators to providing care included: 1) individualized

pain plans 2) comfort prescribing opioids, and 3) electronic medical records.
Individualized care and pain plans drafted by the patients’ hematologist or primary care
provider with instructions for nurses on what opioid dosages to administer to the patient facil-
itated care delivery in the ED. Participants were able to determine if their patients were stable
enough for discharge or required hospital admission based on their patients’ response to their
care plan. Individualized care plans also mitigated biases in instances where patients requested
for high dosages of opioids since the patient’s request could be confirmed by their individual-
ized care plan.

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 The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care

Table 3. Adherence to NHLBI recommendations and opioid prescribing patterns.

Items N (%)
Does your ED have a protocol for treating sickle cell pain?
Yes 77
(69.4)
No 24
(21.6)
Don’t know 10 (9.0)
Does your ED use individualized dosing protocols to treat sickle cell pain?
Yes 56
(50.4)
No 36
(32.4)
Don’t know 18
(16.2)
Prefer not to answer 1 (0.9)
Are you aware of the NHLBI recommendations for the treatment of VOC?
Yes 36
(32.4)
No 74
(66.7)
Prefer not to respond 1 (0.9)
Upon discharge from the ED for sickle cell pain, do you prescribe Scheduled-II medications (i.e.
opioid analgesics) to patients who request them?
Yes 38
(34.9)
No 60
(55.0)
I have never taken care of a SCD patient 2 (1.8)
I have never been asked by an SCD patient for opioid analgesics for their pain management 6 (5.5)
Prefer not to respond 3 (2.7)
Missing, n 2

Missing, participants who provided no response to the survey item; N, total number.
NHLBI, National Heart, Lung and Blood Institute

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“It sets expectations too. I think if having patient expectations saying like I know this is my
care plan, I know that I’m not going to get an eyebrow raised if I ask for 3 milligrams of Dilau-
did because it’s in my care plan that 3 milligrams of Dilaudid is my dose. So I think that set-
ting expectations with patients through care plans is extra helpful.” (Participant 3 Hospital A,
PA)

Participants reported comfort prescribing and administering opioids as a facilitator to care.

Comfort prescribing opioids was attributed to prior experience treating SCD patients and if
there was a consistent record of usage of high doses of opioids in prior ED visits.
All participants reported that electronic medical records equipped them with vital knowl-
edge about their patients’ history, including care plans, recent visits and medications lists.
Information in electronic medical records also enabled providers to assess patient adherence
to treatment and medical appointments.
Recommendations to improve care. Recommendations to improve care of SCD patients
included: 1) comprehensive SCD care; 2) standardized care; 3) increased knowledge and
empathy; and 4) community resources.

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 The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care

Participants, particularly those who worked in a non-comprehensive SCD center (Hospital

A), reported that more centralized comprehensive SCD care could improve SCD patient
outcomes.
Participants advocated for the development of standardized protocols for pain manage-
ment. They urged that a protocol would ensure consistency of care, especially in ED settings
that are learning institutions with high rates of clinician turnover.
Several participants recommended that care of SCD could be improved by more knowledge
and understanding of the disease. They reported that improved knowledge of the disease could
increase empathy and mitigate stigma and bias towards patients.

“I think honestly just understanding and just the nature of the disease I mean we're all aware
of what it is, what it causes and everything but kind of like I said, most of us don't have sickle
cell so we don't fully grasp. . ..” (Participant 13, Hospital B, ED Nurse)

ED providers thought that SCD patients could benefit from additional resources, including
social support and alternative pain management. Participants also recommended the involve-
ment of psychologist and social workers.

“I would say you could make a huge difference with a very small frequent flier population by
having almost like multiple resources available to them so a lot of times they’re not necessarily
coming in just for sickle cell pain crisis. They have social issues, they have you know family
issues, they have psychiatric issues, they have substance abuse issues. I think it’s a small per-
centage of the overall local sickle cell population that we’re seeing over and over and over and
over again so I think if you could focus some kind of multidisciplinary efforts on those patients,
psychiatry, social work, physical therapy, substance abuse counseling; if you could get all that
together in a local spot and plug these people in I think you could probably make a big differ-
ence.” (Participant 5, Hospital A, MD)

Discussion
We conducted focus groups and surveys with ED providers in North Carolina to determine
barriers and facilitators to care of individuals with SCD in the ED setting. ED healthcare pro-
viders encounter several challenges as they provide care to SCD individuals. Our qualitative
data provided context that helped explain our survey results. We were surprised at the strong
endorsement of systems supports, including having adequate knowledge and training (98.2%),
administrative support in the ED (98%) and even good nursing staff ratios (80.6%), and not
surprised at the high endorsement of overcrowding as a barrier to care described in both sur-
veys (64.86%) and focus groups. There was discordance between the survey responses indicat-
ing good nursing staff ratios (80.6%) and comments made during the focus groups about how
difficult it was for nurses to administer opioids every 20 minutes. These findings suggest a
need to improve ED systems to facilitate care of persons with SCD. Strategies to improve SCD
care in the ED include creation of dedicated spaces such as infusion clinics or short-stay units
for management of acute SCD complications [10,11].
Approximately 70% of the survey participants reported lack of awareness of the NHLBI rec-
ommendations for ED SCD management. However, majority of the interview participants
were aware that the guidelines existed but admitted being uniformed on what the guidelines
entailed revealing a gap between implementation and actual utilization of the guidelines. In
addition to standardized guidelines, participants in the interviews advocated for the use of
individualized pain protocols drafted by the patients’ primary care physicians or

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 The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care

hematologists. The guidelines and protocols would ensure optimum pain management and
facilitate decision making concerning ED or inpatient management of SCD complications. In
accordance with previous literature, participants in this study indicated that the use of elec-
tronic medical records and individualized protocols facilitated SCD care, particularly if the
patient was affiliated with the hospital the ED provider worked in [12–17]. However, access to
electronic health records of patients unaffiliated with the hospital proves to be a daunting task
in the United States due to interoperability challenges among hospitals using different elec-
tronic medical record softwares and administrative requirements set by the Health Insurance
Portability and Accountability Act (HIPAA) that need to be met prior to data sharing [18–20].
Stigma was another significant barrier noted in our study. Phrases such as ‘frequent flier’ or
‘drug seeker’ featured prominently in the interviews. The most common barriers related to
stigma that were noted in the survey included patient behavior (67.57%), the opioid epidemic
(67.57%), concern about addiction (49.55%), stigma around SCD (41.44%), implicit bias
(39.64%) and provider attitudes (38.74%). The current opioid epidemic in the United States,
which contributed to 70, 237 drug overdose deaths in 2017, impacts SCD stigma [21,22]. Pain
is the leading cause of hospital visits in SCD [23]. Other than opioids, very few effective treat-
ments exist for SCD pain management. As a result, SCD patients are often stigmatized as
“drug seeking” [23]. Stigma leads to delays in treatment delivery, under-dosing of opioids and
poor SCD pain management [23–25]. A proposed strategy to mitigate stigma noted in the
interviews was to improve provider knowledge and empathy. Studies exploring stigma in
healthcare settings highlight provider training in cultural competency, communication, and
the use of self-assessments and patient rating instruments as probable solutions to improve
provider knowledge and mitigate stigma towards SCD patients [24,25]. However, to our
knowledge, there is no validated measure to assess and address stigma towards SCD patients
presenting in the ED. Interventions specifically targeting ED provider attitudes towards these
patients are warranted [26].
Finally, a major barrier to care provision in our study noted in both the surveys and inter-
views was the inability to establish follow-up appointment with a hematologist or a primary
care physician. Inability to establish follow-up appointments was attributed to lack of aware-
ness on how to contact outpatient clinics, time constraints and high ED patient volumes. To
facilitate contact between the ED and outpatient clinics, Hospital A had an electronic appoint-
ment software that enabled ED providers set up follow-up visits with primary care physicians
and hematologists. However, majority of the focus group participants from Hospital A
reported difficulty with the software or reported time constraints and high patient volumes,
which led to poor utilization of the software: this finding has also been noted in previous litera-
ture that examined the use of electronic appointment softwares [27,28]. A study on a website
referral system by Murnik et al revealed that in spite of proper utilization of appointment soft-
ware, patient adherence to follow up appointments was still poor indicating the need for more
effective methods for establishing linkages to primary care physicians [28]. Interview partici-
pants proposed that assistance from social workers or case-managers could be used to establish
follow-up appointments, ensure care coordination among various providers, and offer assis-
tance to other patient concerns such as transportation to clinics and psychosocial support. Pre-
vious studies demonstrate that effective linkages to outpatient services using case managers
leads to reduced utilization of the ED, better retention in care and improved disease outcomes
[29,30].
Our study has several limitations. The interviews were conducted in three academic teach-
ing hospitals in a suburban and urban setting in central North Carolina and may not be repre-
sentative of other hospitals and geographic regions in North Carolina. The interviews were
also conducted primarily with physicians and nurses in the ED. Our sampling limits the

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 The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care

generalizability of these findings to other healthcare providers with different specializations,

though the main focus of our study was the ED. Despite these limitations, we were able to
achieve thematic saturation implying the possibility of having missed other factors in the inter-
views is minimal. Our study also included surveys that were distributed to health facilities all
over North Carolina expanding the scope of data.

Conclusion
The primary barriers to care were overcrowding and concerns about addiction. Suggested
solutions to improving care included: the use of the NHLBI guidelines; including individual-
ized pain protocols; use of electronic medical records; and strategies to improve provider
knowledge and mitigate stigma. Further research is needed to implement specific strategies to
address these issues and assess their effectiveness in improving care to persons with SCD in
the ED.

Supporting information
S1 File. Focus group and interview guide.
(PDF)
S2 File. Survey guide.
(PDF)

Acknowledgments
We would like to thank all the study participants who took time from their busy work sched-
ules to fill out the surveys and take part in the interviews.

Author Contributions
Conceptualization: Nirmish Shah, Paula Tanabe.
Data curation: Nirmish Shah, Paula Tanabe.
Formal analysis: Rita Vanessa Masese, Dominique Bulgin, Christian Douglas, Nirmish Shah,
Paula Tanabe.
Funding acquisition: Nirmish Shah, Paula Tanabe.
Investigation: Nirmish Shah, Paula Tanabe.
Methodology: Christian Douglas, Nirmish Shah, Paula Tanabe.
Project administration: Nirmish Shah, Paula Tanabe.
Resources: Nirmish Shah, Paula Tanabe.
Software: Rita Vanessa Masese, Dominique Bulgin, Christian Douglas, Paula Tanabe.
Supervision: Nirmish Shah, Paula Tanabe.
Validation: Rita Vanessa Masese, Dominique Bulgin, Christian Douglas, Paula Tanabe.
Visualization: Rita Vanessa Masese, Christian Douglas, Paula Tanabe.
Writing – original draft: Rita Vanessa Masese, Dominique Bulgin, Nirmish Shah, Paula
Tanabe.
Writing – review & editing: Nirmish Shah, Paula Tanabe.

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 The emergency department providers’ perspective on the barriers and facilitators to sickle cell disease care

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