Trusted Resources: Evidence & Education
Scientific literature and patient education texts
Acute Care Utilization at End of Life in Sickle Cell Disease: Highlighting the Need for a Palliative Approach
source: Journal of Palliative Medicine
year: 2019
authors: Johnston EE, Adesina OO, Alvarez E, Amato H, Paulukonis S, Nichols A, Chamberlain LJ, Bhatia S
summary/abstract:Background:
People with sickle cell disease (SCD) have a life expectancy of <50 years, so understanding their end-of-life care is critical.
Objective:
We aimed to determine where individuals with SCD were dying and their patterns of care in the year preceding death to highlight end-of-life research priorities and possible opportunities for intervention.
Design:
Using the California SCD Data Collection Program database (containing administrative data, vital records, and Medicaid claims), we examined people with SCD who died between 2006 and 2015 (cases) at age <80 years and examined their hospital and emergency department (ED) utilization in their last year of life. Comparators included living controls with SCD matched 1:1 based on age, analysis year, insurance, and income.
Results:
We identified 486 people with SCD (cases) who died at a median age of 45 years (SD: 16 years). Most died in the hospital (63%) and ED (15%). In their last year of life, people with SCD were hospitalized for an average of 42 days (SD: 49 days) over five admissions. Inpatient admissions and ED visits were stable throughout the year until the month before death when acute care utilization sharply increased. In their last year of life, cases had more hospitalizations than controls, but similar ED utilization.
Conclusions:
People with SCD are dying acutely at a young age and most die in the hospital and the ED. Since clinicians caring for people with SCD currently cannot predict which acute events may be life-threatening, a comprehensive palliative approach to people with SCD must extend beyond chronic pain management and psychosocial support to include advance care planning.
DOI: 10.1089/jpm.2018.0649
read more
Related Content
-
The Role of Pain Rehabilitation in an Adolescent Sickle Cell Disease Population: A Case SeriesSickle cell disease is an inherited hemo...
-
Trends in Sickle Cell Disease – Related Mortality in the United States, 1979 to 2017Study objective: We provide an updated ...
-
Toronto Neuroscientist Getting Closer to Tailored Treatments for Chronic PainDaily tasks most people don't think too ...
-
APS Scientific Meeting 2019The American Pain Society will hold its ...
-
The ‘Voice of Lagos’ is silent: Entertainer Tosyn Bucknor dies at 37Nigerians are paying tribute t...
-
Sickle cell trait may not increase the risk of deathPeople who carry a gene for sickle cell ...
-
Hospitals See No Link Between US Opioid Crisis and Patients’ Use of Treatment, Study ReportsThe U.S. opioid epidemic is not linked t...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.