Inadequate community knowledge about sickle cell disease among the Indian tribal population: a formative assessment in a multicentric intervention study

Trans R Soc Trop Med Hyg. 2021 Dec 2;115(12):1434-1444. doi: 10.1093/trstmh/trab075.

Abstract

Background: Sickle cell disease (SCD) is a serious public health problem, with >300 000 affected births worldwide each year. About 73% of the SCD-affected people in India belong to the tribal population. The Government of India is planning to implement a programme for SCD and hence people's knowledge of SCD is crucial. This paper reports the SCD-related knowledge among the Indian tribal population.

Methods: As part of a formative assessment before an intervention, data were collected from 9837 adults from 24 primary health centre areas of six states. Each community's knowledge of SCD was elicited through an interviewer-administered pretested questionnaire. Univariate and multivariate analyses were conducted.

Results: Overall, 32.1% (CI 31.2 to 33.1%) of participants had heard of SCD, 7.9% (CI: 7.3 to 8.4%) knew that SCD is hereditary, 19.4% (CI: 18.7 to 20.3%) knew that a blood test can diagnose SCD and 23.9% (CI: 23.1 to 24.8%) knew that SCD is treatable. Only 13.1% (CI: 12.4 to 13.8%) knew that SCD can be prevented. No more than 16% knew about any SCD symptoms. Multiple logistic regression revealed some predictors of basic knowledge (i.e. had heard of SCD).

Conclusions: There is a gross inadequacy of knowledge about SCD in the Indian tribal population. This study warrants implementing a health education programme as a part of the SCD programme.

Keywords: beliefs; health education; indigenous communities; knowledge; sickle cell disease; tribal.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Anemia, Sickle Cell*
  • Educational Status
  • Health Education
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Surveys and Questionnaires