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Haemophilia management programme: Transformation during COVID-19
Haseena Sait1, Shruti M Sajjan1, Shubha R Phadke1
1Department of Medical Genetics, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, Uttar Pradesh, India.
Insights
The COVID-19 lockdown in India disrupted care for individuals with haemophilia, reducing hospital visits and factor use. This highlights the urgent need for home treatment and primary prophylaxis for haemophilia patients.
Area of Science:
- Hematology
- Public Health
- Epidemiology
Background:
- Haemophilia is a serious bleeding disorder impacting quality of life.
- Management in India relies on on-demand factor treatment.
- The COVID-19 pandemic posed significant challenges to patient care.
Purpose of the Study:
- To assess the impact of the COVID-19 lockdown on haemophilia patient care in India.
- To analyze trends in hospital visits, factor utilization, and complications.
- To describe challenges in managing haemophilia during the pandemic.
Main Methods:
- Retrospective study comparing pre-COVID (Oct 2019-Mar 2020) and COVID-19 periods (Apr-Sep 2020).
- Analysis of patient visits, hospital admissions, and coagulant factor (VIII, IX, VIIa) utilization.
- Case descriptions of unusual complications and management challenges.
Main Results:
- Patient visits and admissions significantly decreased during the COVID-19 period.
- Factor utilization reduced, with no use for elective surgeries.
- Eight deaths occurred due to delayed treatment, and management of severe bleeds was challenging.
Conclusions:
- The pandemic underscored the necessity of on-demand home treatment with coagulant factors.
- It also emphasized the need for primary prophylaxis, particularly for young haemophilia patients.
- Improved home-based care models are crucial for haemophilia management during health crises.
Background & Objectives:
Haemophilia is a debilitating bleeding disorder with significant comorbidities affecting the quality of life. In India, the management of these individuals is still limited to on-demand institutional treatment with coagulant factors. In this study, we highlighted the problems faced by these patients in the COVID-19 period due to nationwide lockdown.
Methods:
A retrospective study was done to ascertain the trend in the number of patients with haemophilia A and B visiting the hospital, those succumbing to haemophilic complications and indications for factor requirement in the pre-COVID (October 2019-March 2020) and during the COVID-19 period (April-September 2020). Representative cases with unusual complications were described along with significant challenges faced in providing standard care of treatment to these individuals due to the COVID-19 pandemic.
Results:
A total of 818 and 162 individuals with haemophilia A and B, respectively, were registered with the department. The overall number of patient visits to the hospital significantly reduced from an average of 6.9 outpatient department (OPD) visits per patient in the pre-COVID-19 period to an average of 3.9 OPD visits per patient and admissions reduced to 50 per cent during the COVID-19 period. This led to a reduction in utilization of factors VIII and IX except VIIa for haemophilia with inhibitors. There was no factor utilization for elective surgeries during the COVID-19 period. A total of eight patients succumbed to haemophilia-related complications during the COVID-19 period due to delay in reaching the hospital. The challenges faced in the management of three cases with musculoskeletal bleeds, one case with scrotal haematoma and one with haemothorax during the COVID-19 period were also highlighted.
Interpretation & Conclusions:
COVID-19 pandemic has unveiled the need for on-demand home treatment with coagulant factors and has also brought to light the existing need for primary prophylaxis, especially for younger individuals with haemophilia.
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