Sixty percent of patients with sickle cell disease say they “very much” or “quite a bit” avoid going to the ED during a pain attack because of a previous bad experience.1
Researchers gathered input from 51 patients with sickle cell disease regarding the care they receive in EDs. Many reported experiencing stigma because of providers’ suspicions of drug-seeking behavior. Half said they waited at least two hours for treatment. In terms of how sickle cell disease is managed in the ED setting, “there is a lot of attention on it, but there is still a lot of need for education overall,” says Paula Tanabe, PhD, RN, FAEN, FAAN, one of the study’s authors. Tanabe is vice dean for research at Duke University.
In many EDs, sickle cell pain episodes continue to be managed poorly. “There is still a lot of concern about opioid addiction and a mindset that patients don’t have real pain. Timely and adequate pain medication is still the No. 1 problem,” Tanabe says.
The hope is that with rapid and aggressive treatment, pain can be controlled enough to allow for discharge. “That can result in a lower hospital admission rate, which is good for the patient, good for the hospital, and good for costs,” Tanabe says.
Previous research showed ED nurses could safely administer high-dose opioids for sickle cell disease pain.2 The National Heart, Lung, and Blood Institute (NHLBI) guidelines for sickle cell disease recommend using individualized opioid dosing to treat acute pain in the ED.3 Hematologists or sickle cell disease specialists enter the individualized dosage in the electronic health record. “That’s not always possible, as not everybody has these great support programs with hematologists to write these protocols,” Tanabe says.
An alternative approach is weight-based treatment, with redosing occurring in 30 minutes.3 Tanabe and colleagues are conducting a randomized, controlled trial using the same protocols in six different EDs.4 They are testing both approaches, safety outcomes, hospital admission, and repeat ED visits or readmissions within seven days.
Previously, this research group published a pilot study at two EDs using the same protocol.5 Patients who received individualized dosing reported a greater reduction in pain than those who received a weight-based protocol, without safety concerns.
Posting dosage information in the electronic health record allows patients to walk into any ED with a treatment plan already in place. “This time, it will look real. In the past, physicians would write a letter and give it to the ED, and was sometimes disbelieved,” Tanabe says.
Tanabe and colleagues are studying the success of this approach in eight EDs.6 “This is an important trial that could dramatically change the way vaso-occlusive episodes are treated in the ED,” Tanabe offers.
With multiple trials underway, there is momentum to improve ED care of sickle cell disease. “We’re going to have a lot of data coming out to hopefully strengthen the evidence base around individualized dosing,” Tanabe says. The changing mindset also is reflected in a 2019 Emergency Nurses Association resolution, which called for disseminating treatment recommendations and other educational resources nationally to all EDs. (Read the resolution here.) “Fifteen years ago, that never would have passed,” Tanabe says. “It does show that attitudes are shifting.”
However, delays caused by poor management still happen. “There are still places that are incorrectly triaging patients so they end up in a lower category,” Tanabe reports.
In overcrowded EDs, that means a long wait to see a provider and delays in receiving pain medication. “That triage nurse has so much power. If you don’t get that right, the patient’s pain treatment can be very delayed,” Tanabe underscores.
Putting patients in the right triage category still comes down to the individual ED and the individual triage nurse. If they are wrong, the sickle cell disease patient sits in the waiting room for hours. “If the ED is super crowded, they may sit there anyway, which is a whole other problem,” Tanabe laments.
The NHLBI guidelines recommend the first dose of pain medication should be given within 60 minutes of arrival.3 “If anybody was going to try to improve, I would say look at your triage scores,” Tanabe suggests. “That is a good place to start.”
- Crego N, Masese R, Bonnabeau E, et al. Patient perspectives of sickle cell management in the emergency department. Crit Care Nurs Q 2021;44:160-174.
- Tanabe P, Martinovich Z, Buckley B, et al. Safety of an ED high-dose opioid protocol for sickle cell disease pain. J Emerg Nurs 2015;41:227-235.
- Yawn BP, Buchanan GR, Afenyi-Annan AN, et al. Management of sickle cell disease: Summary of the 2014 evidence-based report by expert panel members. JAMA 2014;312:1033-1048.
- Ibemere SO, Dubbs SB, Barnhart HX, et al. Trial design of comparing patient-specific versus weight-based protocols to treat vaso-occlusive episodes in sickle cell disease (COMPARE-VOE). Contemp Clin Trials 2021;101:106252.
- Tanabe P, Silva S, Bosworth HB, et al. A randomized controlled trial comparing two vaso-occlusive episode (VOE) protocols in sickle cell disease (SCD). Am J Hematol 2018;93:159-168.
- Tanabe P. A comparison of individualized vs. weight based protocols to treat vaso-occlusive episodes in sickle cell disease (COMPARE VOE).