Growth attenuation therapy for children with severe physical and cognitive disability: Practice and perspectives of New Zealand paediatricians.

AIM: There are currently no clinical guidelines concerning the administration of growth attenuation therapy (GAT) for children (regardless of gender) with both severe physical and cognitive disability in New Zealand (NZ). This survey aimed to explore the attitudes of paediatricians towards GAT and the frequency of requests and initiation of GAT in NZ. METHODS: An online survey of paediatricians in NZ was undertaken. Questions covered both clinical experience with GAT and attitudes towards it. RESULTS: Overall, the response rate was 55% (173/317) with 162 complete responses; 25% of respondents (41/166) reported enquiries about GAT. Five had personally prescribed GAT; in total, six NZ children have undergone GAT. A total of 77% of respondents either believed GAT is appropriate or were neutral on the subject. The majority of responders (59%) believed ethical approval should be obtained as part of preparation for GAT. CONCLUSIONS: This is the first study to investigate attitudes and practices of NZ paediatricians regarding GAT for severely disabled children. Results indicate a range of views but suggest that family requests for GAT do occur and that the majority of paediatricians are not opposed to GAT in the appropriate ethical and clinical context. The development of practice guidelines for GAT may lead to a more informed decision-making process about GAT for families and paediatricians.

Growth Attenuation Therapy.

The "Ashley treatment" has provoked much debate and remains ethically controversial. Given that more children are being referred for such treatment, there remains a need to provide advice to clinicians and ethics committees regarding how to respond to such requests. This article contends that there is one particularly important gap in the existing literature about growth attenuation therapy (GAT) (one aspect of the Ashley treatment): the views of parents of children with profound cognitive impairment (PCI) remain significantly underrepresented. The article attempts to redress this balance by analyzing published accounts both from parents of children who have received GAT and from parents who oppose treatment. Using these accounts, important points are illuminated regarding how parents characterize benefits and harms, and their responsibilities as surrogate decisionmakers. This analysis could contribute to decisionmaking about future requests for GAT and might also have wider relevance to healthcare decisionmaking for children with PCI.

Non-invasive Prenatal Testing: The Problem with "Fast Cars".

Prenatal screening and its technological counterpart, prenatal diagnosis (PND), have been the subject of extensive debate since their inception, particularly given PND's inextricable links with abortion. Despite this, prenatal screening policy and practice has evolved over the last few decades and is now well established. However, a new permutation of prenatal testing, first performed in 2011 and subject to rapid commercialisation, potentially heralds a new era. This article provides an introduction to non-invasive prenatal testing and outlines some of the ethical and legal issues associated with the early clinical integration of this rapidly evolving technology.

Parents' experiences of newborn screening for genetic susceptibility to type 1 diabetes.

Advances in genomic medicine have lead to debate about the potential inclusion of genetic tests for susceptibility to common complex disorders in newborn screening programmes. Empirical evidence concerning psychosocial reactions to genetic testing is a crucial component of both ethical debate and policy development, but while there has been much speculation concerning the possible psychosocial impact of screening newborns for genetic susceptibilities, there remains a paucity of data. The aim of the study reported here is to provide some of this missing empirical evidence, using type 1 diabetes as an example of a common disorder with multiple significant genetic contributors to its aetiology. Semi-structured interviews were conducted with 11 parents of babies who had received increased risk results in a study that involved newborn screening for genetic susceptibility to type 1 diabetes. Interpretative phenomenological analysis was used to evaluate the data. The interview data suggest that the probabilistic nature of results of genetic susceptibility tests impacts upon all aspects of parents' psychosocial reactions, resulting in a complex and dynamic process quite different to that described in relation to current newborn screening programmes. While parents generally reported fairly minor levels of concern in response to news of their child's increased genetic risk, these worries frequently recurred, and perception of risk also varied and fluctuated over time. Both individual and contextual factors appeared to interact with the inherent uncertainty of the test result to contribute to the dynamic nature of parental reactions, and their behavioural responses. The implications of these findings for future research and for the debate concerning potential expansion of newborn screening are discussed.

Newborn Vitamin K Prophylaxis: A Historical Perspective to Understand Modern Barriers to Uptake.

Since its initial discovery almost a century ago, vitamin K has been labeled as both lifesaving and malignancy causing. This has led to debate of not only its use in general but also regarding its appropriate dose and route. In this article, we review through a historical lens the past 90 years of newborn vitamin K from its discovery through to its modern use of preventing vitamin K deficiency bleeding (VKDB). Although researchers in surveillance studies have shown considerable reductions in VKDB following intramuscular vitamin K prophylaxis, ongoing barriers to the universal uptake of vitamin K prophylaxis remain. Reviewing the history of newborn vitamin K provides an opportunity for a greater understanding of the current barriers to uptake that we face. Although at times difficult, improving this understanding may allow us to address contentious issues related to parental and health professional beliefs and values as well as improve overall communication. The ultimate goal is to improve and maintain the uptake of vitamin K to prevent VKDB in newborns.

Newborn vitamin K prophylaxis: an analysis of information resources for parents and professionals.

AIMS: Vitamin K prophylaxis represents one of the first healthcare decisions families make for their newborn. Information resources are an important component of this process. This study aimed to identify and analyse written information about vitamin K. METHODS: Resources concerning vitamin K prophylaxis for both parents and health professionals were accessed through tertiary hospitals in New Zealand and Australia, midwives associated with Queen Mary Maternity Centre (Dunedin, New Zealand), antenatal class providers in the Dunedin, New Zealand area, and an online search of Australian and New Zealand government and hospital websites, as well as the Centre for Disease Control (CDC) in the US. These materials were assessed with regard to coverage of information relevant to vitamin K prophylaxis, whether a statement of the recommended option was included, and information concerning parental choice. RESULTS: In Australia, the majority of centres use the Australian Government National Health and Medical Research Council (NHMRC) resource. In New Zealand, eight different resources are in use. There was variation between resources in all aspects, including use of different incidence rates for vitamin K deficiency bleeding (VKDB). No New Zealand resources were available in languages other than English. The resources for health professionals also varied, and the two available New Zealand consensus statements (Ministry of Health and College of Midwives) differed in terms of their main recommendation. CONCLUSIONS: Many different information resources are available regarding vitamin K prophylaxis in New Zealand. Standardisation of such information would be more equitable and would facilitate easier review of content and translation into multiple languages.