Health care provider attitudes toward patients with acute vaso-occlusive crisis due to sickle cell disease: development of a scale (original) (raw)
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Patient Preference and Adherence, 2023
There is little research on care-seeking preferences during active pain crises for sickle cell disease (SCD) patients and their caregivers. The objective of this study was to identify relevant, patient or caregiver narratives of the pain crisis experience, to understand the factors that contribute to care-seeking during a pain crisis, and to identify preferences when making care-seeking decisions during a pain crisis. Patients and Methods: Qualitative semi-structured interviews were conducted with Canadian residents with a self-reported SCD diagnosis, who were either ≥18 years of age or an adolescent between the ages of 12-18. Interviews were hosted virtually, audiorecorded, and transcribed verbatim. Results: A total of 23 individuals participated (74% female; 26% male), including six adolescents with parent dyads and 11 adults. Almost all (N = 21, 91.3%) participants were Black/African American. Participants mentioned many factors that influenced careseeking decisions, mainly the symptom and pain experience; institutional factors (waiting time, the presence of and adherence to treatment guidelines, and the empathy or racial bias felt from medical staff); and subject-level factors (age and a flexibility in daily responsibilities). Conclusion: This study identified important institutional and subject-level considerations involved in care-seeking decisions. Most importantly, this study highlights the racial stigma faced by many patients when care-seeking in the ER and the lack of care protocol implemented, which hinders care-seeking in a dedicated medical facility. From the patient perspective, these are clear gaps to fill to encourage patients to seek and receive the care they deserve.
Journal of the …, 2007
Financial support: This project was funded by an NIH grant: Pain in Sickle Cell Epidemiology Study 1 RO1 HL064122-01. Background: Sickle cell disease (SCD) patients can receive their ambulatory care from either SCD specialists (caregivers with sickle cell-only clinics) or nonspecialized care centers. Patient satisfaction, an important factor that may influence compliance and outcome, can differ between the two groups because of the perceived quality of care, outcomes or practice style. Methods: We administered a patient satisfaction survey to 308 participants in an SCD prospective cohort study. Of the 308 patients, 133 (43.2%) received the majority of their SCD care at specialized centers, 152 (49.3%) received their care from nonspecialized centers and 26 (7.5) did not provide information. The satisfaction surveys measured general satisfaction (GS), technical quality (TQ), interpersonal manner (IM), communication (CM), financial aspects (FA), time spent with doctor (TA), and accessibility and convenience (AC). Patients reported their levels of satisfaction using a five-point Likert scale. We compared unadjusted group means, as well as means adjusted for potential confounders such as martal status, on patient satisfaction between specialized and nonspecialized centers. Results: SCD patients who received their care from specialized centers had significantly higher mean satisfaction scores, compared to those who received their care from nonspecialized centers: GS 4.00(±0.93) vs. 3.66 (± 01.16, p=0.0326), TQ 3.98 (± 0.77) vs. 3.65 (± 0.91, p=0.0058), AC 3.83 (± 0.79) vs. 3.51 (± 1.02, p=0.01 42) , FA 3.88 (± 0.96) vs. 3.49 (± 1.25, p=0.01 20). There were no statistically significant group differences in IM, TA and CM. Conclusion: SCD patients who received most of their SCD care from specialized centers had somewhat higher satisfaction scores in some areas when compared with patients who received their care from nonspecialized centers.
Journal of Hematology, 2021
Background While pain is the hallmark of sickle cell disease (SCD), healthcare personnel are often ill-equipped to adequately treat patients who present in vaso-occlusive crisis (VOC). Although symptom severity varies from individual to individual, SCD is characterized by intervallic pain as a result of oxygen deprivation in tissues and organs. Regardless of pain severity, SCD patients are often viewed as drug seekers by healthcare personnel who have concerns regarding patients’ dependence on opioids which may lead to addiction. The objective was to assess the types and amount of opioids used to treat VOC in comparison to Centers for Disease Control opioid prescription guidelines. Methods Literature search was conducted using CINAHL, PubMed, the Cochrane Library, Web of Science and hand search. Data were analyzed from 1999 to 2018. Randomized trials, observational, and case studies involved hospitalized adults with SCD who were prescribed opioids to treat VOC. Quality assessment was...
Improving Emergency Providers’ Attitudes Toward Sickle Cell Patients in Pain
Journal of Pain and Symptom Management, 2016
Background-Provider biases and negative attitudes are recognized barriers to optimal pain management in sickle cell disease, particularly in the emergency department (ED). Measures-This prospective cohort measures pre-and post-intervention provider attitudes towards patients with sickle pain crises using a validated survey instrument. Intervention-ED providers viewed an eight-minute online video that illustrated challenges in sickle cell pain management, perspectives of patients and providers as well as misconceptions and stereotypes of which to be wary. Outcomes-Ninety-six ED providers were enrolled. Negative attitude scoring decreased, with a mean difference-11.5 from baseline, and positive attitudes improved, with a mean difference +10. Endorsement of red-flag behaviors similarly decreased (mean difference-12.8). Results were statistically significant and sustained on repeat testing three months post-intervention. Conclusions/Lessons Learned-Brief video-based educational interventions can improve emergency provider attitudes towards patients with sickle pain crises, potentially curtailing pain crises early, improving health outcomes and patient satisfaction scores.
Pain medicine (Malden, Mass.), 2018
Recurrent vaso-occlusive pain episodes, the most common complication of sickle cell disease (SCD), cause frequent health care utilization. Studies exploring associations between patient activation and acute health care utilization for pain are lacking. We tested the hypothesis that increased activation and self-efficacy are associated with decreased health care utilization for pain in SCD. In this cross-sectional study of adults with SCD at a tertiary medical center, we collected demographics, SCD phenotype, Patient Activation Measure levels, and self-efficacy scores using structured questionnaires. We reviewed charts to obtain disease-modifying therapy and acute health care utilization, defined as emergency room visits and hospitalizations, for vaso-occlusive pain episodes. Negative binomial regression analyses were used to test the hypothesis. We surveyed 67 adults with SCD. The median age was 27.0 years, 53.7% were female, and 95.5% were African American. Median health care utili...
Improving Care for Sickle Cell Pain Crisis Using a Multidisciplinary Approach
Pediatrics, 2019
OBJECTIVES: Frequent hospitalizations for sickle cell disease (SCD) vaso-occlusive crises (VOCs) are associated with school absenteeism, emotional distress, and financial hardships. Our goal was to decrease hospital days for VOC admissions by 40% over a 5-year period. METHODS: From October 2011 to September 2016, a multidisciplinary quality-improvement project was conducted with a plan-do-study-act methodology. Five key drivers were identified and 9 interventions implemented. Interventions included individualized home pain plans, emergency department and inpatient order sets, an inpatient daily schedule, psychoeducation, and a biofeedback program. High users (≥4 admissions per year) received an individualized SCD plan and assigned mental health provider. We expanded the high-use group to include at-risk patients (3 admissions per year). Data were analyzed for patients ages 0 to 21 years admitted for VOC. Hospital days were the primary measure; the 30-day readmission rate was the bal...
Journal of Primary Care & Community Health, 2016
Background: Sickle cell disease (SCD) is a complex chronic disease requiring multidisciplinary care that involves primary care physicians (PCPs) working with a hematologist or SCD specialists. However, PCPs often lack access to SCD specialists and are unaware of SCD guidelines or efficacious treatment. Methods: We partnered with Community Care of North Carolina (CCNC) to identify assigned PCPs for SCD patients with Medicaid across North Carolina. CCNC network administrators distributed a web-based questionnaire for completion. The questionnaire involved 12 self-reported items on a yes-no or a 1 to 5 Likert-type scale that assessed PCP attitudes toward SCD care, awareness of recent guidelines, and comanaging hydroxyurea. Results: Of the 53 PCPs who completed the electronic survey, 73% felt they were comfortable with the number of SCD patients in their practice. Most PCPs reported having infrequent communications with an SCD specialist (67%) and most were also not aware of the 2014 SC...