Authors (including presenting author) :
Lam WYW, Cheung YL, Kong TY, Hau WL, Luk HM
Affiliation :
Department of Clinical Genetics, Hong Kong Children’s Hospital
Introduction :
Glucose-6-Phosphate Dehydrogenase (G6PD) deficiency is endemic in Hong Kong, and around 5% of male newborn are affected. Neonatal Screening Programme of G6PD deficiency via umbilical cord blood samples provides screening services for babies born in hospitals under the Hospital Authority. Comprehensive counselling is conducted by nursing staff, at bedside or via phone, to mothers once their babies are screened positive. Further phone enquiries with concerns about G6PD deficiency are regularly received from mothers and their family members. In this regard, a Service Enhancement Programme (SEP) of face-to-face (FTF) counselling was introduced to enhance families’ understanding of G6PD deficiency from July 2023 to June 2024.
Objectives :
• To enhance knowledge of parents and other caregivers on G6PD deficiency
• To evaluate the effectiveness of a face-to-face counselling on families’ understanding of G6PD deficiency
Methodology :
In addition to routine phone counselling following a positive G6PD result, parents and other caregivers (e.g. grandparents and domestic helpers) were invited to a designated G6PD deficiency clinic for FTF counselling on a family basis. Each session lasted 30-45 minutes and included an interactive Q&A session with visual element, providing a more in-depth explanation of G6PD deficiency, its mode of inheritance, recurrence risk and precautious measures.
Result & Outcome :
Totally, 110 families attended the SEP. Families’ understanding of G6PD deficiency was assessed before and after the counselling, through a set of identical questions on basic knowledge of G6PD deficiency. The satisfaction (scoring scale of 1-6) towards the SEP was also evaluated with aspects of counselling (content, duration, presentation skill), location of clinic and overall satisfaction.
Families scored above 80% increased from 55% to 79% afterwards. They expressed satisfaction with the FTF counselling. Their satisfaction on the content, duration and presentation skill rated an average of 5.2 out of 6.
Through the SEP, the families’ understanding of G6PD deficiency could be enhanced. The overall satisfaction score could imply that the SEP was acceptable among families with newly screened-positive G6PD deficiency babies. This evaluation of the SEP could act as a reference for future improvement of the counselling services of G6PD deficiency.
