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Adequacy and pitfalls of G6PD deficiency counseling in Hong Kong
1Department of Health, 2/F Cheung Sha Wan Jockey Club Clinic, Kowloon, Hong Kong, China.
Insights
Telephone counseling effectively informed parents about Glucose-6-Phosphate-Dehydrogenase (G6PD) deficiency, with most families accepting the diagnosis and continuing with future pregnancies. While less personal than in-person sessions, phone support remains a practical choice for G6PD deficiency counseling.
Area of Science:
- Medical Genetics
- Public Health
- Genetic Counseling
Background:
- Glucose-6-Phosphate-Dehydrogenase (G6PD) deficiency is prevalent in Hong Kong, affecting 4.5% of males and 0.36% of females.
- A territory-wide neonatal screening program for G6PD deficiency has been in place since 1984.
- Due to resource limitations, telephone counseling is utilized for parents of G6PD-deficient infants.
Purpose of the Study:
- To evaluate the effectiveness of telephone counseling for G6PD deficiency from parents' perspectives.
- To assess parental awareness, perception, and attitude towards G6PD deficiency and telephone counseling.
- To determine the impact of G6PD deficiency on parental decisions regarding future reproduction.
Main Methods:
- A study involving over 300 parents of G6PD-deficient babies.
- Telephone interviews using a questionnaire to gather data on understanding, attitudes, and reproductive decisions.
- Analysis of parental responses regarding G6PD deficiency and counseling effectiveness.
Main Results:
- Over 90% of counseled cases attended recommended maternal and child health centers.
- Most parents accepted the G6PD deficiency diagnosis and it did not influence their future pregnancy decisions.
- Telephone counseling, despite lacking personal connection, effectively reached the target population.
Conclusions:
- Telephone counseling is an effective method for delivering G6PD deficiency information and support in Hong Kong.
- The study found that G6PD deficiency diagnosis did not negatively impact parents' reproductive choices.
- While face-to-face counseling offers a more personal connection, telephone counseling remains a viable and effective option due to its practicality.
Abstract:
Glucose-6-Phosphate-Dehydrogenase (G6PD) deficiency is common in Hong Kong with an incidence of 4.5% in male and 0.36% in female (Lo et al. 1996).The Neonatal Screening Unit of Clinical Genetic Service started its territory-wide neonatal screening program for G6PD deficiency and congenital hypothyroidism in 1984 (Lam et al, 1986). Because of insufficient manpower and resource, we have been giving health counseling on the phone to parents of G6PD deficient babies and then refer them to nearby maternal and child health centres for monitoring of jaundice. The disease, mode of inheritance, recurrence risk and the precaution against certain medicines (Chan 1996) and chemicals are explained. The purpose (Lam, 1994) is to reassure the parents that their G6PD deficient babies can be as normal as everyone and that they can have normal life. Nevertheless, it has not been established whether telephone counseling has any effect on the affected family in the form of psychological trauma (Marteau, 1989; Fyro, 1987; Li et al, 1996) or significant influence on the decision on future reproduction. This study tried to evaluate the service from the parents' point of view by 1) gathering information on parents' awareness and perception of G6PD deficiency, 2) determination of parents' attitude towards the telephone counseling, and 3) finding out the effect of G6PD deficiency on parents' decision on future reproduction. Over 300 parents were contacted by telephone, and were asked to respond to questions on a questionnaire . The telephone interview focused on parents' understanding of G6PD deficiency, their attitude towards this disease and the possible effect on future reproduction decision. Results showed that over 90% of cases that we had counseled attended the maternal and child health centres. Most of them accepted the presence of G6PD deficiency in their family which did not affect their decision on future pregnancy. Telephone counseling failed to establish a helping relationship with the parent as face to face counseling was more personal. The findings revealed that though telephone counseling had its shortcoming it served the target group effectively. Telephone counseling is still the method of choice for the G6PD deficiency counseling in this locality.