Global geographic differences in healthcare utilization for sickle cell disease pain crises in the CASiRe cohort

Strunk, Crawford; Tartaglione, Immacolata; Piccone, Connie M.; Colombatti, Raffaella; Andemariam, Biree; Manwani, Deepa; Smith, Ashya; Haile, Haikel; Kim, Esther; Wilson, Samuel; Asare, Eugenia Vicky; Rivers, Angela; Farooq, Fatimah; Urbonya, Rebekah; Boruchov, Donna; Boatemaa, Gifty Dankwah; Perrotta, Silverio; Ekem, Ivy; Sainati, Laura; Rao, Sudha Ramachandra; Zempsky, William T.; Sey, Fredericka; Antwi‐Boasiako, Charles; Segbefia, Catherine; Inusa, Baba; Campbell, Andrew

doi:10.1016/j.bcmd.2021.102612

Cited by 7 publications

(2 citation statements)

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“…Despite SCD being one of the most frequent monogenic diseases in Europe ( 1 ), we found only one paper on HRQOL, which was conducted in the United Kingdom and focused only on the validity of ASCQ-Me measures ( 59 ). A possible reason for such scarcity could be that in hospital-centered health systems like the European systems, clinicians’ choices are more guided by clinical and hematological parameters rather than by systematic HRQOL evaluation ( 3 , 119 ). Moreover, many European patients with SCD are immigrants from low-income countries.…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective

2022

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BackgroundSickle cell disease (SCD) and thalassemia are inherited blood disorders, which can lead to life-threatening events and chronic organ damage. Recent advances in treatments have increased life expectancy, and hemoglobinopathies have become chronic illnesses with social and emotional impairments. Thus, health-related quality of life (HRQOL) assessment has a fundamental role in disease management and treatment, and generic and disease-specific questionnaires are reliable and validated measures to estimate disease burden. The heterogeneous distribution of treatment opportunities worldwide influences physical, social, and emotional disease perception.ObjectivesTo review publications concerning HRQOL for SCD and thalassemia in different areas of the world in order to gather a global perspective of questionnaires used and outcomes evaluated.MethodsA systematic review of the literature was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The Medline databases were searched on 29 September 2021. Inclusion criteria were as follows: (1) studies of HRQOL assessment in SCD and thalassemia patients by using the PROMIS, the SF-36, the SCSES, the PedsQL-SCD, the PedsQOL generic core scale, the ASCQ-Me, and the TranQoL; and (2) every article type, including non-English studies. We excluded studies that were not limited to SCD or thalassemia and studies that were not specific to hemoglobinopathies, and not consistent with the topic of HRQOL assessment. We did not include the gray literature. A total of 102 out of 124 articles from PubMed, Cochrane Library, and Google Scholar were eligible for inclusion (66 SCD articles and 36 thalassemia articles). The quality of studies was assessed through Critical Appraisal tools for use in JBI Systematic Reviews. Data extraction was conducted using a standardized data collection form (authors, year and country of publication, study design, age and number of patients, HRQOL questionnaires, questionnaire language, and clinical outcomes).ResultsThe evaluation of HRQOL was conducted on all continents, but differences in the worldwide frequency of HRQOL assessment were observed. HRQOL of SCD patients was less investigated in Europe. HRQOL of thalassemia patients was less investigated in South-East Asia and Africa. Generic HRQOL questionnaires (PROMIS, SF-36, and PedsQL) were frequently adopted, while disease-specific ones (ASCQ-Me, SCSES for SCD, and TranQoL for thalassemia) were less used. Translation into local languages has been often performed.ConclusionHealth-related quality of life is a complex outcome that has been increasingly incorporated in clinical research and clinical practice worldwide, although with regional differences. Disease-specific outcomes (pain for SCD and transfusion burden for thalassemia) and healthcare system characteristics, particularly in low-income countries, have an impact on HRQOL and should be considered in healthcare plans.

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Section: Discussionmentioning

confidence: 99%

Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective

2022

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“…As per the recent reports, gross living wage per month in Ghana is $257, while the minimum wage has remained $2, for past two decades (21). In a study conducted by the Consortium for the Advancement of Sickle Cell Research, SCD patients in Ghana visited emergency or outpatient departments more frequently for their pain episodes (annualized mean 2.01) compared to SCD patients in the US, United Kingdom (UK), and Italy (22). In a country like Ghana with high levels of poverty, frequent hospitalization and other healthcare expenditures associated with SCD, can impose a huge economic burden on the affected families and healthcare facilities.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of Treatment Patterns, Healthcare Resource Utilization and Cost of Illness for Sickle Cell Disease in Ghana: A Private Medical Insurance Claims Database Study

Marfo

Dei‐Adomakoh

Segbefia

et al. 2022

Preprint

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Background Sickle cell disease (SCD) is a major public health concern in sub-Saharan Africa, accounting for nearly 75% of the global disease burden. The current analysis evaluated patient characteristics, treatment patterns, healthcare resource utilization and associated costs in patients with SCD, based on a Private Medical Insurance Database in Ghana. Methods This retrospective longitudinal cohort study was conducted using a e-claims database from Ghana (01 January 2015 to 31 March 2021). Patients were stratified by age (0 month to < 2 years, ≥ 2 years to ˂6 years, ≥ 6 years to < 12 years, ≥ 12 years to < 16 years; ≥16 years) and vaso-occlusive crisis (VOC) (< 1, ≥ 1 to < 3, and ≥ 3 per year). Results The study included 2,863 patients (mean age: 20.1 years; Min age: 0; Max age: 83; females 56.1%). Overall, 52.2% (n = 1,495) of SCD patients were ≥ 16 years and 17.0% (n = 486) were in the ≥ 2 to ˂6-years age group. The majority of patients aged ≥ 16 years (62.5%) in the database did not have reported VOC episodes while 35.9% of patients had 1 to 3 VOC episodes per year during the follow-up period. Consultation-based prevalence of SCD was 0.5% [95% confidence interval (CI): 0%-1.3%] − 1.4% [CI: 0.6%-2.2%]. Malaria, upper respiratory tract infection (URTI) and sepsis were the common complications of SCD. Analgesics were the most frequently prescribed medications followed by anti-infectives, hematinics, and antimalarials. SCD patients had median cost incurred for consultation/hospital services of $11.3 (Interquartile range [IQR] $6.2 - $27.2). For patients with VOC, maximum median cost was incurred for medications ($10.9 [IQR $5.0-$32.6]). Overall median healthcare cost was highest for individuals with ≥ 3 VOCs per year ($166.8 [IQR $70.3-$223.5]). Conclusion SCD imposes a significant healthcare burden in Ghana, especially in patients with VOC. There is a need for reimbursed treatment options that could reduce the long-term burden associated with SCD and VOC.

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Exploring barriers to sickle cell disease care in a lower-middle income country – A qualitative exploration of the Tharu perspective in rural Nepal

Liu,

Benson,

Liang

et al. 2023

Clinical Epidemiology and Global Health

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Global geographic differences in healthcare utilization for sickle cell disease pain crises in the CASiRe cohort

Cited by 7 publications

References 34 publications

Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective

Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective

Evaluation of Treatment Patterns, Healthcare Resource Utilization and Cost of Illness for Sickle Cell Disease in Ghana: A Private Medical Insurance Claims Database Study

Exploring barriers to sickle cell disease care in a lower-middle income country – A qualitative exploration of the Tharu perspective in rural Nepal

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