Sickle cell and the burden of disease in England
File(s)
Author(s)
AlJuburi, Ghida
Type
Thesis
Abstract
Background
Sickle cell disorders (SCD) are the most common inherited blood disorders in England. Without
prompt diagnosis and proper treatment, they can be a serious source of morbidity and
mortality. Sickle cell diseases affect mainly black minority and ethnic populations, and have so
far received relatively low priority from a health policy perspective. Antenatal and newborn
screening, the development of minimum standards, antibiotic prophylaxis, comprehensive
immunisations, and preventive diagnostic tests have positively influenced SCD management.
There remains an unclear picture as to the trends and health care utilization of patients with
SCD in England.
Aims
This study looks at the burden of disease in England by assessing hospital admissions,
readmissions and related costs. It also aims to identify gaps in care and prevention which may
identify possible contributors to avoidable admissions.
Findings
Using Hospital Episode Statistics (HES) data, trends for SCD hospital admissions in England
showed a rise in 50% of hospital admissions over a 10 year period. The most deprived areas
had a higher rate of readmission and in-patient mortality among those with SCD. Adolescents
had a higher rate of readmission possibly identifying a gap in health care access. Local findings
in a high prevalence area showed that the majority of admissions were for a short length of stay
and 74% of patients accounted for multiple admissions. A patient focus group and
questionnaire both identified potential gaps in care and prevention.
Conclusion
Through the use of 6 studies which showed the SCD admission rates in England, the
readmission rates, local admissions, costs associated with admission and patient perspectives in
both care and prevention, there is a clearer picture as to the trends and health care utilization of
patients with SCD in England. The studies suggest that ascertaining the prevalence of at-risk
groups in England as well as addressing inequalities in health care access among minority
groups and areas of high disease prevalence can further aid in disease management. Shifting
diagnostic and follow-up care from acute care facilities to primary care facilities and promoting
preventive care measures and adherence to standards and guidelines may possibly decrease the
cost burden, reduce avoidable hospital admissions and increase the timeliness and effectiveness
of disease management. Investing in training and education of primary care physicians for sickle
cell diseases may also improve quality of care.
Sickle cell disorders (SCD) are the most common inherited blood disorders in England. Without
prompt diagnosis and proper treatment, they can be a serious source of morbidity and
mortality. Sickle cell diseases affect mainly black minority and ethnic populations, and have so
far received relatively low priority from a health policy perspective. Antenatal and newborn
screening, the development of minimum standards, antibiotic prophylaxis, comprehensive
immunisations, and preventive diagnostic tests have positively influenced SCD management.
There remains an unclear picture as to the trends and health care utilization of patients with
SCD in England.
Aims
This study looks at the burden of disease in England by assessing hospital admissions,
readmissions and related costs. It also aims to identify gaps in care and prevention which may
identify possible contributors to avoidable admissions.
Findings
Using Hospital Episode Statistics (HES) data, trends for SCD hospital admissions in England
showed a rise in 50% of hospital admissions over a 10 year period. The most deprived areas
had a higher rate of readmission and in-patient mortality among those with SCD. Adolescents
had a higher rate of readmission possibly identifying a gap in health care access. Local findings
in a high prevalence area showed that the majority of admissions were for a short length of stay
and 74% of patients accounted for multiple admissions. A patient focus group and
questionnaire both identified potential gaps in care and prevention.
Conclusion
Through the use of 6 studies which showed the SCD admission rates in England, the
readmission rates, local admissions, costs associated with admission and patient perspectives in
both care and prevention, there is a clearer picture as to the trends and health care utilization of
patients with SCD in England. The studies suggest that ascertaining the prevalence of at-risk
groups in England as well as addressing inequalities in health care access among minority
groups and areas of high disease prevalence can further aid in disease management. Shifting
diagnostic and follow-up care from acute care facilities to primary care facilities and promoting
preventive care measures and adherence to standards and guidelines may possibly decrease the
cost burden, reduce avoidable hospital admissions and increase the timeliness and effectiveness
of disease management. Investing in training and education of primary care physicians for sickle
cell diseases may also improve quality of care.
Version
Open Access
Date Issued
2014-09
Date Awarded
2015-11
Copyright Statement
Attribution NoDerivatives 4.0 International Licence (CC BY-ND)
Advisor
Majeed, Azeem
Publisher Department
School of Public Health
Publisher Institution
Imperial College London
Qualification Level
Doctoral
Qualification Name
Doctor of Philosophy (PhD)