Knowledge of sickle cell in a screened population

Abstract

The aim of this study is to begin to assess the awareness and knowledge of sickle-cell amongst carriers and non-carriers in a screened population of primarily African-Caribbean descent. A structured questionnaire containing 10 multiple-choice knowledge questions on sickle-cell was administered by community interviewers of African-Caribbean descent who did not know the respondents' haemoglobinopathy status. The survey took place in Leicester between the advent of selective screening at ante-natal clinics for sickle-cell in 1989 and the appointment of a haemoglobinopathy counsellor in 1993. One hundred and four people whose blood had been tested recently for sickle-cell (50 consecutive carriers and 54 non-carriers tested after the start date of the project) were identified as subjects for interview. Responses were obtained from 24 carriers (two of whom, it transpired, had sickle-cell anaemia) and 31 noncarriers. No significant differences in levels of sickle-cell awareness were found between carriers and non-carriers. Patterns of inheritance and the range of ethnic groups who carry the sickle-cell trait were least understood. Ethically there are grave problems in screening without systematic counselling, but little haemoglobinopathy counselling is undertaken by generic health professionals in the absence of haemoglobinopathy counsellors. There is considerable demand for leaflets and further counselling, though it is felt unlikely that screening in itself contributes much to raising levels of knowledge.