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Importance: Individuals with sickle cell disease (SCD) have reduced life expectancy; however, there are limited data available on lifetime income in patients with SCD. Objective: To estimate life expectancy, quality-adjusted life expectancy, and income differences between a US cohort of patients with SCD and an age-, sex-, and race/ethnicity-matched cohort without SCD. Design, Setting, and Participants: Cohort simulation modeling was used to (1) build a prevalent SCD cohort and a matched non-SCD cohort, (2) identify utility weights for quality-adjusted life expectancy, (3) calculate average expected annual personal income, and (4) model life expectancy, quality-adjusted life expectancy, and lifetime incomes for SCD and matched non-SCD cohorts. Data sources included the Centers for Disease Control and Prevention, National Newborn Screening Information System, and published literature. The target population was individuals with SCD, the time horizon was lifetime, and the perspective was societal. Model data were collected from November 29, 2017, to March 21, 2018, and the analysis was performed from April 28 to December 3, 2018. Main Outcomes and Measures: Life expectancy, quality-adjusted life expectancy, and projected lifetime income. Results: The estimated prevalent population for the SCD cohort was 87 328 (95% uncertainty interval, 79 344-101 398); 998 were male and 952 were female. Projected life expectancy for the SCD cohort was 54 years vs 76 years for the matched non-SCD cohort; quality-adjusted life expectancy was 33 years vs 67 years, respectively. Projected lifetime income was $1 227 000 for an individual with SCD and $1 922 000 for a matched individual without SCD, reflecting a lost income of $695 000 owing to the 22-year difference in life expectancy. One study limitation is that the higher estimates of life expectancy yielded conservative estimates of lost life-years and income. The analysis only considered the value of lost personal income owing to premature mortality and did not consider direct medical costs or other societal costs associated with excess morbidity (eg, lost workdays for disability, time spent in the hospital). The model was most sensitive to changes in income levels and mortality rates. Conclusions and Relevance: In this simulated cohort modeling study, SCD had societal consequences beyond medical costs in terms of reduced life expectancy, quality-adjusted life expectancy, and lifetime earnings. These results underscore the need for disease-modifying therapies to improve the underlying morbidity and mortality associated with SCD. Abstract source

Objective: To compare adverse pregnancy outcomes between women with sickle cell trait (SCT) and women with normal hemoglobin. Study Design: A retrospective cohort study of women who delivered within Kaiser Permanente Northern California between 2006 and 2013. Using hemoglobin electrophoretic profiles, we defined women with hemoglobin AS (HbAS) as having SCT and those with hemoglobin AA (HbAA) as having normal hemoglobin. Outcomes were pregnancy-induced hypertension (PIH), small for gestational age (SGA), gestational diabetes (GDM), and preterm delivery (PTD). Demographic and pregnancy outcome variations were assessed in bivariate analyses. Multivariable logistic regression modeling was used to estimate odds ratios for the association between primary outcomes and selected characteristics. Results: Of 31,840 eligible women, 868 (2.7%) had SCT. Women with SCT were more likely to have PIH (15.6% vs. 12.2%, p value = 0.003) and SGA (8.3% vs. 6.1%, p value = 0.008), less likely to have GDM (6.8% vs. 9.8%, p value = 0.003) and had similar PTD prevalence (8.1% vs. 7.6%, p value = 0.600). In multivariable analyses, SCT was not an independent predictor of these outcomes. Racial/ethnic minorities had higher adjusted odds of PIH, SGA, and GDM. Conclusion: SCT alone does not appear to be associated with adverse pregnancy outcomes. Race/ethnicity is a risk factor for adverse pregnancy outcomes. Abstract source

Objective: To understand spirituality/religiosity as experienced by people with sickle cell disease, and its influence on coping with the disease. Method: A qualitative, descriptive, and exploratory study conducted in the State of Bahia. Twenty-nine respondents participated in semi-structured interviews. Content analysis was used to analyze the empirical material. Results: Individuals with sickle cell disease experience spirituality/religiosity motivated by their hope for a miracle, and fear of death; among their rites are: reading religious materials, individual and group prayer, and attendance at worship services. The effects on their health include: comfort by means of coping by comparing two evils, anxiety relief, social support, and lifestyle changes; however, spirituality/religiosity may be impaired. Final Considerations: This study demonstrates the need to qualify health professionals to address spiritual issues of these individuals during illness, with the aims of diagnosing suffering and anguish, and providing care, comfort and strengthening of the spiritual bonds of these individuals. Abstract source

One of the best feelings in the world is cutting a hospital bracelet. Cutting a hospital bracelet can symbolize a fresh start. You’ve been discharged from the hospital. You are feeling like the best version of yourself — happy, relaxed, optimistic, and ready to prove that sickle cell can’t keep you down. However, sometimes I feel like hospital bracelets are cut prematurely. I was admitted to the hospital Sept. 13 because of a vaso-occlusive crisis. I had pain in my arms, my back, and my legs. I was taking oral morphine, dihydrocodeine, and acetaminophen every four hours.  Related story

Caregivers are responsible for the physical care and emotional support of those unable to care for themselves due to illness, injury, or disability (a condition that affects major life activities). The challenges of caring for a loved one with a chronic disease, like sickle cell disease (SCD), can be isolating and overwhelming. Life as you know it ends, and you begin to spend all of your time and energy caring for your loved one. For many, however, caregiving is also a rewarding experience, bringing family members closer together. Learn the Effect Sickle Cell Disease Has on Family Members & Caregivers Below we share short vignettes (or snippets) from real-life stories of two caregivers of young adults with SCD, as well as the perspective of a young adult with SCD and the effect his condition had on his caregivers. Their experiences help shine a light on the: • Role of caregivers • Effect SCD has on a caregiver’s life • Struggles and challenges faced by caregivers • Ways caregivers have overcome challenges in order to keep their family safe and healthy Abstract source