Prevalence, Determinants and Impact of Haemoglobin Phenotype Misdiagnosis Among Parents of Children Living with Sickle Cell Disease in Nigeria

Aim:Nigeria has the highest number of children with sickle cell disease (SCD) with a consistent prevalence of 2 to 3% despite increased awareness and widespread premarital screening. In our practice, we observed that complaints of haemoglobin phenotype misdiagnosis are common among parents of children living with SCD. The present study was thus carried out to identify the prevalence, determinants, as well as the perceived impacts of haemoglobin phenotype misdiagnosis in Lagos, Nigeria. Materials and Methods:This study included the parents of children with SCD aged below 18 years. Interviewer administered questionnaires were used to obtain relevant biodata, sociodemographic data and an assessment of the perceived impact from both caregivers and their children, between May and July 2019.Results:Fifty-nine (32.4%) out of the 182 parents recruited had a previous haemoglobin phenotype misdiagnosis. Misdiagnosis was significantly more in individuals in the upper social class and those that had their tests performed in private laboratories. Clinical, psychosocial and economic impacts of having an affected child with SCD were reported.Conclusion:The frequency of wrong haemoglobin phenotype diagnosis is alarmingly rampant amongst the parents of children with SCD. This is potentially devastating to these families and to society; hence, the government needs to act by auditing and enforcing regulatory oversight of laboratories as well as instituting a nationwide new-born screening programme to replace the existing widespread use of haemoglobin electrophoresis for the diagnosis of SCD.