Exploring barriers and strategies for hydroxyurea uptake using the CFIR–ERIC framework: A qualitative study of sickle cell disease in India

Problem Considered: Hydroxyurea therapy is the cornerstone in treating sickle cell disease (SCD).However, the adherence to hydroxyurea by individuals with SCD is limited, owing to several barriers at multiple levels.Given these challenges, our study sought to elucidate the factors influencing hydroxyurea utilisation through interviews with healthcare providers, individuals living with SCD, and their families.Methods: The study was undertaken in four districts of India with a high prevalence of SCD.Qualitative data was collected from local healthcare providers, individuals with SCD, and their parents.The determinants were categorised using a CFIR-20 and strategies to improve uptake of hydroxyurea were developed using CFIR-ERIC matching tools in consultation with stakeholders.Results: The study covered a total of 132 individuals with SCD and 18 healthcare personnel.The main barriers to hydroxyurea uptake were: (i) limited awareness and misconceptions about SCD and hydroxyurea among patients and caregivers; (ii) concerns among healthcare providers about side effects and lack of paediatric formulations; (iii) myths, stigma, and reliance on traditional healers; (iv) limited accessibility to healthcare facilities, with high out-of-pocket costs; and (v) overburdened healthcare staff with inadequate time for counselling.Conclusions: Limited awareness among healthcare providers and individuals with SCD, along with challenges related to the affordability and accessibility of healthcare facilities, as well as the absence of paediatric formulations of hydroxyurea, hindered the uptake of hydroxyurea therapy in individuals with SCD.Strategies to improve the uptake of hydroxyurea therapy include community awareness, continued medical education for healthcare practitioners, J o u r n a l P r e -p r o o f providing incentives to treating doctors and involvement of private practitioners for in treatment.

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Journal
Clinical Epidemiology and Global Health
Published
2025-10-18
DOI
https://doi.org/10.1016/j.cegh.2025.102205
Primary Topic
Hemoglobinopathies and Related Disorders
Type
article
Field-Weighted Citation Impact
0.00

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article

Exploring barriers and strategies for hydroxyurea uptake using the CFIR–ERIC framework: A qualitative study of sickle cell disease in India

Naveen Khargekar, Manisha Rajan Madkaikar, Anindita Banerjee, Raj Gajbhiye et al.
Clinical Epidemiology and Global Health
Hemoglobinopathies and Related Disorders
article

Exploring barriers and strategies for hydroxyurea uptake using the CFIR–ERIC framework: A qualitative study of sickle cell disease in India

Naveen Khargekar, Manisha Rajan Madkaikar, Anindita Banerjee, Raj Gajbhiye, Nithin Rajamani, Vandana Mullakkal Venugopalan
article en

Abstract

Problem Considered: Hydroxyurea therapy is the cornerstone in treating sickle cell disease (SCD).However, the adherence to hydroxyurea by individuals with SCD is limited, owing to several barriers at multiple levels.Given these challenges, our study sought to elucidate the factors influencing hydroxyurea utilisation through interviews with healthcare providers, individuals living with SCD, and their families.Methods: The study was undertaken in four districts of India with a high prevalence of SCD.Qualitative data was collected from local healthcare providers, individuals with SCD, and their parents.The determinants were categorised using a CFIR-20 and strategies to improve uptake of hydroxyurea were developed using CFIR-ERIC matching tools in consultation with stakeholders.Results: The study covered a total of 132 individuals with SCD and 18 healthcare personnel.The main barriers to hydroxyurea uptake were: (i) limited awareness and misconceptions about SCD and hydroxyurea among patients and caregivers; (ii) concerns among healthcare providers about side effects and lack of paediatric formulations; (iii) myths, stigma, and reliance on traditional healers; (iv) limited accessibility to healthcare facilities, with high out-of-pocket costs; and (v) overburdened healthcare staff with inadequate time for counselling.Conclusions: Limited awareness among healthcare providers and individuals with SCD, along with challenges related to the affordability and accessibility of healthcare facilities, as well as the absence of paediatric formulations of hydroxyurea, hindered the uptake of hydroxyurea therapy in individuals with SCD.Strategies to improve the uptake of hydroxyurea therapy include community awareness, continued medical education for healthcare practitioners, J o u r n a l P r e -p r o o f providing incentives to treating doctors and involvement of private practitioners for in treatment.

Clinical Epidemiology and Global HealthVol. 36
Regional Medical Research Centre (IN), ICMR - National Institute of Immunohaemotology (IN)
Indian Council of Medical Research
Openalex Percentile: Top 59%
Hemoglobinopathies and Related Disorders
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