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.
