El-Hait, Sana' Adel Saqf; (1993) Sickle cell anaemia in Kuwait. Parents knowledge about the genetic transmission, their reproductive practices and their attitudes towards screening. Masters thesis (M.Sc), UCL (University College London).

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Abstract

Objectives: To determine the quality of knowledge about the genetic transmission of sickle cell disease (SCD) among parents of affected children, to describe their reproductive behaviour and to ascertain their attitudes towards screening. Design: Cross sectional study in July - August 1990. Setting: The haematology unit of the paediatric department of Sabah Hospital in Kuwait. Subjects: 52 families, responded as couples (51.4%), mothers (37.2%) and fathers (11.4%), aged 24 - 55 years. Consanguinity (first cousin) among them was 61.6% (30.8%). Results: Knowledge about the disease genetic transmissio: 50% of parents scored "good" knowledge, 27% scored fair, and 23% low knowledge. 90% knew it is inherited, 59% knew it is transmitted from both parents, 70% were aware of the presence of a carrier in their children, only 42% knew that the risk persists in each pregnancy, 92% thought there is an increased risk of cousins' marriages. Mass media was a source of information in only 27%, and 23% knew about a relative affected before they have had planned for the affected child. Reproductive behaviour: Mean number of pregnancies before diagnosis of the first affected child was 3.7 (SD 2.5), and after diagnosis 2 (SD 1.8). Parents' decision was influenced by the family size rather than by their socio-economic conditions or by their knowledge about the disease. Mean number of children among those who intend to have more children in spite of SCD diagnosis was 3.7 (SD 1.6), and among those who did not intend to have more 5.6 (SD 2). Only 9.6% stopped further pregnancies because of diagnosis of an affected child. The 40% who used contraceptive measures wanted to space pregnancies and not to limit the family size. - Attitudes The best age for information transfer (by 72%) about the genetic transmission was 15 years. All the 70% who were aware of the presence of a carrier among their children would advise their children to disclose about it to their partners in the future. 96% wanted to screen before marriage. Divorce rate because of the disease 5.7% compared to 1.7% among Kuwaiti population. Almost all 96% voted for neonatal screening. 73% would choose prenatal diagnosis if it were available in Kuwait, but only 31% would terminate an affected foetus. o Conclusion: Although some parents of SCD patients in Kuwait were rather knowledgeable about the genetic transmission, parents still need to be well informed about it, especially on the issues like the risk concept, the meaning of the recessive inheritance and the carrier mating. Their reproductive behaviour could have been modified had they been well counselled, and social conflicts especially in the presence of consanguinity could have been avoided. Their high desire for screening would be supported by establishing genetic programmes in Kuwait, making use of the new technology in choosing preventive measures against the disease.

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