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Updated: Feb 24, 2026
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Cross-Cultural Adaptation, Reliability and Validity of MOS Short Form Health Survey (SF-36) in Sickle Cell Disease
Shaily B Surti1, Shubhangi Patel1, Yogita Sharma2
1Department of Community Medicine, Parul Institute of Medical Sciences and Research, Parul University, Vadodara, India.
Purpose:
Patient-reported outcomes are critical for chronic illnesses like sickle cell disease (SCD), as its clinical manifestation is symptom-based and subjective. In order to conduct this assessment, valid and reliable self-reported tools are required. There is a lack of evidence for the reliability and validity assessment of even generic quality of life tools such as SF-36 in SCD patients. Hence, this study was conducted to address this knowledge gap.
Methods:
This study utilised cross-sectional data from 125 SCD patients selected for a multi-centric study conducted across five SCD-endemic districts. Cross-cultural adaptation and translation of the tool were done in the local languages of these districts. Statistical analyses for floor and ceiling effects, item-internal consistency, interscale correlations and internal consistency were performed.
Results:
Role Limitations due to Physical Problems and Social Functioning are the most affected and least affected areas of SCD patients' lives, respectively. Item internal consistency was established for all subscales except General Mental Health, which recorded the highest distribution of responses. For subscale Vitality, Energy and Fatigue, only Cronbach's α coefficient value (0.69) was marginally less than the cutoff.
Conclusion:
Item level and scale level findings found SF-36 to be a reliable and valid tool to use in SCD patients in India. Further research with an adequate sample size is recommended to report conclusive evidence for other local languages.
