Knowledge Shortfalls Among Parents of Children with Sickle Cell Disease

Substantial shortfalls in knowledge exist among parents of children with sickle cell disease (SCD) related to pneumococcal infection prophylaxis (PIP), according to recent findings, pointing to a need for greater spread of awareness of PIP in clinics for SCD.¹

These findings resulted from a recent cross-sectional study looking at the different viewpoints, perceptions, and awareness of parents with children that have SCD. This research was specifically related to the use of PIP, the methods by which parents procure phenoxymethylpenicillin, and their actions and views regarding PIP.

Caregivers of children were acknowledged by the investigators of this study as having complex sets of perceptions regarding pneumococcal vaccination and penicillin V prophylaxis.^2,3

The research on this topic was led by Elom Doe, from the Department of Pharmacy Practice at Kwame Nkrumah University of Science and Technology’s Faculty of Pharmacy and Pharmaceutical Sciences in Kumasi, Ghana.

“According to literature reviews, studies on (pneumococcal conjugate vaccine) and antibiotic prophylaxis among parents and caregivers of SCD patients have yet to be thoroughly examined in Ghana, which warrants more research,” Doe and colleagues wrote. “Therefore, the present study sought to document caregivers’ knowledge, attitude, and practice of PCV and penicillin V prophylaxis among children living with SCD.”

The research team used a cross-sectional quantitative study design, seeking to collect data from parents and caregivers of pediatric patients that had diagnosed SCD and were given care at a specialized pediatric sickle cell clinic found in the Komfo Anokye Teaching Hospital (KATH) in Ghana.

KATH is a 1200-bed tertiary health center which serves as a referral center for 13 of the 16 regions in Ghana, hosting one of their largest specialist pediatric clinics for SCD. Those diagnosed with SCD are allowed into the clinic at early ages and they are treated with a unique regimen.

Caregivers that came from diverse backgrounds, though there were referrals from several suburbs and other areas in the region, and these made up the study population. The investigators used a minimum sample size of 197 subjects, conducting their work from May – July 2022, with consecutive sampling happening in the clinic days.

The research team focused on subjects with hemoglobin SC (HbSC), hemoglobin SS (HbSS), or Hemoglobin S-Beta thalassemia (HBSβThal), which they confirmed using DNA tests or electrophoresis with family studies. The team included children who were in the age range of 2 – 12 years and had daily care provided by their biological parents or those they lived with.

A structured questionnaire was implemented, with 27 inquiries covering sociodemographic data, knowledge regarding phenoxymethylpenicillin, pneumococcal vaccine, and pneumococcal disease, vaccine preferences, perceptions related to prevention of infections, adherence to phenoxymethylpenicillin, views regarding pneumococcal disease and its prophylaxis, and the act of obtaining phenoxymethylpenicillin.

Further questions by the investigators were created for study participants with inquiries related to pneumococcal disease and its prophylaxis following the survey’s completion.

Overall, the research team reported that 12% of the subjects were shown to be aware of the preventive effects of vaccination against pneumococcal disease. They noted that only 4% were found to have prior knowledge of PCV vaccines, adding that 96% were shown to be familiar with phenoxymethylpenicillin tablets and 40% knew about the tablets’ preventive properties.

Almost all of the study’s participants, at 98%, were found by the team to have expressed a preference for vaccines over the tablets.

While phenoxymethylpenicillin is covered by Ghana’s national insurance, the study showed that 87% of those who responded had gotten tablets from sources outside the hospital through the use of cash. The team found that 12% had sourced the tablets from the hospital facility, using insurance or using cash payment.

Additionally, the investigators concluded that around 38% of the subjects reported having discontinued tablet-based treatment as a result of several different factors. These included financial issues, intentional cessation, noncompliance among the children, and running out of their medication.

“Therefore, there is a need for education and awareness creation on pneumococcal infection and its prophylaxis, including the use of the vaccine (PIP) in sickle cell clinics to ensure optimum clinical and health outcomes, as well as an overall reduction in morbidity and mortality related to pneumococci infections in SCD patients,” the investigators wrote.

1. ^{Doe E, Nguah SB, Mensah KB, Buabeng KO. Caregivers’ knowledge, attitude, and perception toward pneumococcal infection prophylaxis in pediatric sickle cell disease patients in Kumasi, Ghana. Health Sci Rep. 2023;6(11):e1665. Published 2023 Oct 31. doi:10.1002/hsr2.1665.}
2. ^{Rouusounides A, Papaevangelou V, Hadjipanayis A, et al. Descriptive study on parents’ knowledge, attitudes and practices on antibiotic use and misuse in children with upper respiratory tract infections in Cyprus. Int J Environ Res Public Health. 2011; 8(8): 3246-3262. doi:10.3390/IJERPH8083246.}
3. ^{Voo JYH, Lean QY, Ming LC, Md. Hanafiah NH, Al-Worafi YM, Ibrahim B. Vaccine knowledge, awareness and hesitancy: a cross sectional survey among parents residing at Sandakan District, Sabah. Vaccines. 2021; 9(11):1348. doi:10.3390/VACCINES9111348.}