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 characteristics, 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 prescribing 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 disagree/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 collected 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 extensive training in qualitative research methods. The study utilized a semi-structured interview 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 facilitators 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 compensation 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 11^TM software was used to code, organize and manage qualitative data. Codes were developed deductively from topics in the interview guide and inductively from the content 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 portions 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.

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)

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. Participants 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. Inadequate communication with primary care providers also limited the participants’ ability to establish follow-up appointments for their patients. Lack of follow-up appointments with primary care physicians and hematologists perpetuated a cycle of patients receiving their care primarily 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 impacted the care they provided. Participants from Hospital A used language commonly associated 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 illnesses, 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 forget, 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 facilitated 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 individualized care plan.

“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 Dilaudid because it’s in my care plan that 3 milligrams of Dilaudid is my dose. So I think that setting 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 knowledge 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.

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 management. 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 involvement 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 percentage 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 difference.” (Participant 5, Hospital A, MD)