Burden of disease, treatment utilization, and the impact on education and employment in patients with sickle cell disease: A comparative analysis of high‐ and low‐ to middle‐income countries for the international Sickle Cell World Assessment Survey

Osunkwo, Ifeyinwa; James, John S; Rassi, Fuad El; Nero, Alecia; Minniti, Caterina P.; Trimnell, Cassandra; Paulose, Jincy; Ramscar, Nicholas; Bailey, Tom; Rajkovic‐Hooley, Olivera; Andemariam, Biree

doi:10.1002/ajh.26576

Cited by 7 publications

(2 citation statements)

References 28 publications

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“…In this premise, yoga can play a vital role as it is found to be beneficial in regulating emotions, encouraging coping behaviors, and enabling better stress management. [ 16 ] The same survey also reported that SCD has a significant impact on patients’ lives, with most patients reporting and experiencing fatigue, difficulty sleeping, and a reduced ability to work or attend school. Yoga practices, especially those that involve meditation and deep relaxation techniques (DRTs) like mind sound resonance technique (MSRT) and Yoga Nidra , have been shown to significantly improve sleep quality and fatigue levels.…”

Section: Introductionmentioning

confidence: 98%

Yoga Module Development and Validation for Sickle Cell Disease

Zaidi,

Mithila,

Mavathur

et al. 2023

International Journal of Yoga

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Introduction: Sickle cell disease (SCD) is a genetic blood disorder that affects the shape and function of red blood cells (RBCs), which can lead to several health problems affecting the quality of life. SCD can be treated with certain expensive treatments such as RBC transfusion, hydroxyurea, stem cell transplantation, gene therapy, or bone marrow transplant. However, some of the most common symptoms such as pain, anxiety, and stress can also be alleviated with alternative therapies like yoga. In light of this, there is a need for the development of a specific yoga module (YM) for SCD that can complement the current therapies. Objective: To develop and validate a YM for SCD. Methodology: Concise literature reports on yoga practices used for varied symptoms/comorbidities associated with SCD were compiled and presented to focus groups. Based on the presented report and personal experience, the focus group created a preliminary version of the module. The preliminary module was further refined based on content validity ratio (CVR) following module validation by 33 yoga experts. Results: One hour ten minutes module developed by the focus group had in total 27 practices including, loosening exercises, asanas, pranayama, relaxation techniques, and meditation. After validation by the experts, 21 practices with a CVR ≥ 0.33 were retained. The predominant reason for excluding 12 practices was intensity, which may have some adverse effect on sickle cell comorbidities. Conclusion: The module developed is the first validated module for SCD.

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Section: Introductionmentioning

confidence: 98%

Yoga Module Development and Validation for Sickle Cell Disease

Zaidi,

Mithila,

Mavathur

et al. 2023

International Journal of Yoga

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“…The unemployment rates in adults with SCD vary from 25% to 60%. 13 More individuals in the United States report a negative impact of SCD on their employment/schooling compared with other high- and middle-income countries, 14 and employment status in SCD is associated with decreased health care use. 15 , 16 The indirect costs associated with SCD have been studied largely in single-center studies, are often model-based, and are usually limited to adults and children.…”

Section: Introductionmentioning

confidence: 99%

Burden of employment loss and absenteeism in adults and caregivers of children with sickle cell disease

Gordon,

Welkie,

Quaye

et al. 2024

Blood Advances

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Sickle cell disease (SCD) is a genetic disorder affecting 100,000 people with estimated annual medical costs of $3 billion in the US; however, the economic impact on patients is not well described. We aimed to examine the indirect economic burden and to test the hypothesis that socioeconomic status and greater social vulnerability risks are associated with increased absenteeism and employment loss. We surveyed adults and caregivers of children with SCD at five US centers during 2014-2021. Logistic regression models were used to examine associations of employment loss and missed days of work with demographics and social determinants. Indirect costs were estimated by multiplying self-reported missed days of work and job loss by 2022 average wages by state of participating institution. Of the 244 participants, 10.3% reported employment loss in the last 5 years, and 17.5% reported missing 10 or more days of work. Adults had three times more employment loss compared to caregivers of children with SCD (OR 3.18, 95%CI 1.12-9.01) but fewer missed days of work (OR 0.24, 95%CI 0.11-0.0.51). Participants who did not live with a partner reported increased employment loss (OR 4.70, 95%CI 1.04-21.17) and more missed days of work (OR 4.58, 95%CI 1.04-20.15). The estimated annual indirect economic burden was $2,266,873 ($9,290 per participant). Adults with SCD and caregivers of children with SCD commonly report employment loss and missed days of work with important risk factors. The high indirect economic burden suggests that future economic evaluation of SCD should include SCD-related indirect economic burden.

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