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3671 Impact of an Individualized Pain Plan (IPP) for Adults with Sickle Cell Disease Experiencing a Vaso-Occlusive Episode (VOE) on Patient Satisfaction and ED Provider Confidence in Treating Pain

Program: Oral and Poster Abstracts
Session: 901. Health Services and Quality Improvement - Non-Malignant Conditions: Poster II
Hematology Disease Topics & Pathways:
Research, Sickle Cell Disease, adult, Clinical Practice (Health Services and Quality), Clinical Research, health outcomes research, Hemoglobinopathies, Diseases, Study Population, Human
Sunday, December 10, 2023, 6:00 PM-8:00 PM

Rita V Masese, MD, MSc1*, Lauren Siewny, MD2*, Siera Gollan, PhD3*, Jeffrey A. Glassberg, MD4, Victor R. Gordeuk, MD5, Jane S Hankins, MD, MS6, Cathy Melvin, PhD, MPH7*, Liliana Preiss8*, Paula Jean Tanabe, PhD, RN, FAEN, FAAN9, Marsha Treadwell, PhD10 and Allison A. King, MD, PhD, MPH11

1School of Nursing, Duke University, Durham, NC
2Department of Emergency Medicine, Duke University Hospital, Durham, NC
3Center for Blood Disorders, Medical College of Georgia, Augusta, GA
4Department of Emergency Medicine, Icahn School of Medicine at Mount Sinai, New York, NY
5Sickle Cell Center, University of Illinois at Chicago, Chicago, IL
6St. Jude Children's Research Hospital, Memphis, TN
7Department of Public Health Sciences, Division of Health Behavior and Health Promotion, Medical University of South Carolina, Charleston, SC
8RTI International, Durham, NC
9Duke University, Durham, NC
10Department of Pediatrics, Division of Hematology, University of California San Francisco Benioff Children's Hospital, Oakland, CA
11School of Medicine, Washington University, Saint Louis, MO


The leading cause of Emergency Department (ED) visits among individuals with sickle cell disease (SCD) is acute pain vaso-occlusive episodes (VOE’s). NHLBI guidelines recommend treatment with individualized pain plans (IPP’s). To facilitate the uptake of IPP’s, the National Heart Lung and Blood Institute funded eight centers across the US to participate in the Sickle Cell Disease Implementation Consortium (SCDIC). We report findings from one of the consortium’s implementation projects: An Individualized Pain Plan with Patient and Provider Access for Emergency Department Care of Sickle Cell Disease (ALIGN).

In ALIGN, the SCD specialist developed individualized pain plans (IPPs) for ED providers via the electronic health record (EHR) and patients via their patient portal in a phone app. We assessed changes in patient satisfaction with ED care and ED provider comfort in managing VOE after a recent visit between baseline and after IPP implementation for ED providers and patients. We hypothesized an improvement of 0.5 standard deviations in patient satisfaction from baseline to after the implementation of IPPs. We also assessed patient and provider willingness to use IPPs in the EHR and patient portal.


Patients and providers were enrolled from the eight SCDIC sites; six sites had IPPs already available in the EHR for ED providers, and none had IPPs available in the patient portal. Patients were eligible if they were 18-45 years old, had SCD, had access to a cell phone, had an ED VOE visit 90 days before enrollment, and had an ED VOE visit to the study site’s ED within one year. Provider inclusion criteria were ED physicians, nurse practitioners, and physician’s assistants with access to the EHR. The SCD specialist wrote the IPP after patient enrollment. Patients completed surveys at baseline about an ED visit within the last 90 days and again after enrollment, within 96 hours after an ED visit for VOE. The surveys collected data on patient-perceived quality of care and satisfaction with the ED. Providers completed surveys at baseline and after managing an enrolled patient in the ED. The surveys collected data on provider comfort in managing VOE. Both patients and providers answered questions about their likelihood of using IPPs. Descriptive statistics were utilized to examine sociodemographic characteristics and summarize patient and provider satisfaction.


One hundred fifty-nine patients completed the baseline and follow-up survey. Almost all were African American (95.4%), female (64.7%), and had Hb SS/Sβ0 genotype (71.9%). Majority (57.6%) reported they were quite a bit or very much satisfied with the care they received at baseline. There was no difference in satisfaction at baseline vs post IPP implementation (P=0.3). About 77.2% of patients responded either very much or quite a bit when asked how much the ED doctors and nurses believed they had very bad SCD pain after implementing IPPs compared with 65.4% at baseline (p=0.02). Most (64.1%) patients were more or extremely likely to show the doctor their pain plan when they returned to the ED.

One hundred thirty-five providers completed the baseline and at least one follow-up survey. There was no difference is provider comfortability in their ability to manage the acute VOE post IPP implementation compared to baseline (p=0.6). More than half (62.2%) could see the pain plan in the EHR and 52.38% found the IPPs extremely easy to use. Almost all (97.6%) ED providers ordered the opioids as suggested in the IPPs. Almost all (94.7%) reported they intended to use the IPPs most or all the time.


In this implementation science protocol, all eight sites successfully implemented IPPs in the EHR for ED providers and patients in their patient portal. Both patients and ED providers enthusiastically endorsed the use of IPP’s, which can help guide management of VOE in any ED, regardless of the center.

Disclosures: Gordeuk: Takeda: Consultancy; Emmaus: Consultancy, Research Funding; CSL-Behring: Consultancy; Novartis: Research Funding; Modus Therapeutics: Consultancy; GBT/Pfizer: Consultancy, Research Funding; Incyte: Research Funding; Forma: Consultancy, Research Funding. Treadwell: Wolters Kluwer Health: Patents & Royalties; Pfizer/Global Blood Therapeutics: Consultancy.

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