Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States.

Sickle cell disease (SCD) is the most common inherited blood disorder in both Jamaica and the United States and is characterized by poor quality of life and debilitating complications, with the hallmark symptom being pain caused by acute and chronic conditions. Individuals with SCD often experience stigma due to their disease status, opioid use, and race. This study sought to understand the influence of perceived stigma and demographic/clinical characteristics on quality of life in adults with SCD in Jamaica (n = 50) and the United States (n = 50). Participants completed interviewer-administered surveys including demographic/clinical characteristics; the Measure of Sickle Cell Stigma (MoSCS); and the Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me). A set of general linear models for each country was built to examine the influence of explanatory variables on the quality of life outcomes. Overall, stigma scores were low for both countries, with the exception of the MoSCS disclosure concerns and expected discrimination subscales, where scores averaged medium and high, respectively. In both countries, being employed was associated with better quality of life; and reports of stigma (internalized stigma and expected discrimination) was associated with worse quality of life. These findings have several implications for healthcare providers caring for individuals with SCD, policy makers, and researchers. Specifically, findings can be used to advocate for improved access to mental health care for individuals with SCD and inform stigma reduction intervention approaches in SCD.

Assessment of Interrater Reliability of the Emergency Severity Index After Implementation in Emergency Departments in Jamaica Using a Learning Collaborative Approach.

INTRODUCTION: In 2016, the Ministry of Health in Jamaica selected the Emergency Severity Index as the triage tool to be used nationally. This study evaluated the effectiveness of this approach by assessing the interrater reliability among new users trained with minimal resources by 2 experienced trainers, 1 local and 1 international. METHODS: A retrospective case series review was conducted within an online learning collaborative framework. After completion of the training, the participants from each of the 19 clinical sites were asked to submit 2 triage cases per month for blinded review by the expert trainers. The triage categories assigned by each reviewer were compared with those assigned by the newly trained Emergency Severity Index providers. A weighted kappa value was calculated to assess the degree of agreement between the sites and the expert trainers. RESULTS: A total of 166 cases were received over the study period. Participation in the learning collaborative was consistently below 50%. The interrater reliability between the expert trainers (κ = 0.48) as well as between each scorer and each accident and emergency department site (κSF = 0.33, κPT = 0.26) was low, although there was improvement over the study period. Incomplete triage documentation limited raters' ability to assign triage categories and assess interrater reliability. DISCUSSION: Despite a rigorous implementation process, the interrater reliability of the Emergency Severity Index skills of Jamaican emergency nurses and doctors when compared with that of the 2 experts was poor. Several areas were identified for strengthening. Considerations for the implementation of the Emergency Severity Index in countries outside of the US were also discussed.