If the neonatal screening program is to be expanded, parents would prefer for information about the program be given during pregnancy. In addition, they preferred an opt-out consent approach, on condition that screening was for the purpose of preventing irreversible harm. Parental opinion was divided on this issue if the aim of screening were to be widened.

Aims: Information about risk factors and preventive measures given before conception is estimated to prevent 15–35% of adverse pregnancy outcomes. We aimed to identify women’s motives for not responding to an invitation for preconception counseling (PCC) from their general practitioner. Methods: A purposive sample of 11 women who did not respond to an invitation for PCC and who became pregnant within 1 year was interviewed. Results: Three key themes influencing nonresponse emerged from the data: perceived knowledge, perceived lack of risk and a misunderstanding of the aim of PCC. Conclusion: For successful future implementation of PCC, a more tailored approach may be necessary for certain (groups of) women, addressing the reasons why women do not consider themselves part of the target group for PCC.

Background: Advances in genomics will open up opportunities in the fields of genetic testing, early diagnosis and disease treatment. While neonatal screening is the field of application par excellencefor these developments, the debate on its potential benefits and drawbacks is mainly theoretically driven and based on the opinions of professionals. Methods: We conducted a qualitative study of the perceptions, preferences and needs of parents (and parents to be) with respect to expansion of the neonatal screening programme. Seven focus group discussions were conducted. Using disease scenarios, 4 examples of conditions amenable to neonatal screening were discussed in depth. All focus group discussions were audio taped and content analysed. Results: Participants thought that the medical benefits of screening were very important for the child. Assuming the availability of effective early medical treatment, almost 100% would be willing to participate in a screening programme. If such treatment were absent, their potential willingness would be much lower. Conclusions: The divergence in attitudes and preferences we found in this study reflected the complexity inherent in any consideration of screening for additional conditions. To implement such options successfully and to direct applied research in genomics, it is important to develop a better understanding of the thinking of target groups, namely parents.

The Child Health Questionnaire (CHQ)-87-item child and adolescent self-report (CF87) is an increasingly used health-related quality-of-life instrument for measuring the self-perceived physical and psychosocial well-being of children aged 10 years and older. The aims of this study were to evaluate structure, reliability and validity of the Dutch version of the CHQ-CF87 among adolescents in the general Dutch population. Thus, the study extends the data on the psychometric properties of the instrument and reports on the underlying structure and the applicability of the summary score measures, both of which were not reported in previously published studies. Questionnaires were sent to a random sample of 1696 adolescents aged 12-15 years, the response rate was 78%. The mean age of the resulting sample was 14 years and approximately half were boys. A large majority (95.2%) of the subjects were born in The Netherlands, 21% reported a chronic health condition. Results demonstrated good internal consistency of items and scales, and discriminant and concurrent validity. Factor analysis at scale level supported the measurement model of the CHQ for the secondary factors of physical health and psychosocial health. Factor analysis at item level yielded somewhat less univocal results. It is concluded that further evaluation of the CHQ-CF is recommended. Meanwhile, the results, together with the results of earlier studies, suggest that the instrument can be used in pediatric outcome studies, provided practitioners and researchers are aware of the reported limitations.

Based on this initial evaluation, the questionnaire seems feasible and valid for use with children in the age range 8-18 years.