European survey on knowledge and attitudes of public health professionals on public health genomics: pilot study

Background: During the past decade a debate has arisen on the possible utility of genomic science for public health purposes. Within this context, a survey is being conducted to assess attitudes of European public health (PH) professionals belonging to European Public Health Association (EUPHA) network regarding their role in the implementation of public health genomics (PHG), and their knowledge and attitudes regarding genetic testing and the delivery of genetic services. Methods: A pilot on-line survey was conducted on professionals from Sapienza University of Rome and the Vrije University of Amsterdam. The survey tool is composed of 5 sections: Personal details, Professional activity, Knowledge on genetic testing and delivery of genetic services, Attitudes on genetic testing and delivery of genetic services, Attitudes on the role of PH professionals in PHG. Results: 34 people responded to the questionnaire, mostly medical doctors (61.8%). No respondents correctly identified all evidence-based applications of genetic testing. More than one third of respondents agreed that it would be more important to invest resources in the social and environmental causes of ill health than in genetic testing. Nearly 70% thought that PHG needs to be grounded on evidence of effectiveness, a lower rate agreed ii should be grounded on cost-effectiveness. The rate of agreement with the proposed roles of PH professionals in PHG was very high. Conclusion: This pilot study showed a positive attitude but the need to improve knowledge of PH professionals on PHG. It provided useful input for the implementation of the survey to all members of the EUPHA network

Genomics knowledge and attitudes among European public health professionals. Results of a cross-sectional survey

Background The international public health (PH) community is debating the opportunity to incorporate genomic technologies into PH practice. A survey was conducted to assess attitudes of the European Public Health Association (EUPHA) members towards their role in the implementation of public health genomics (PHG), and their knowledge and attitudes towards genetic testing and the delivery of genetic services. Methods EUPHA members were invited via monthly newsletter and e-mail to take part in an online survey from February 2017 to January 2018. A descriptive analysis of knowledge and attitudes was conducted, along with a univariate and multivariate analysis of their determinants. Results Five hundred and two people completed the questionnaire, 17.9% were involved in PHG activities. Only 28.9% correctly identified all medical conditions for which there is (or not) evidence for implementing genetic testing; over 60% thought that investing in genomics may divert economic resources from social and environmental determinants of health. The majority agreed that PH professionals may play different roles in incorporating genomics into their activities. Better knowledge was associated with positive attitudes towards the use of genetic testing and the delivery of genetic services in PH (OR = 1.48; 95% CI 1.01–2.18). Conclusions Our study revealed quite positive attitudes, but also a need to increase awareness on genomics among European PH professionals. Those directly involved in PHG activities tend to have a more positive attitude and better knowledge; however, gaps are also evident in this group, suggesting the need to harmonize practice and encourage greater exchange of knowledge among professionals

Identification of delivery models for the provision of predictive genetic testing in Europe: protocol for a multicentre qualitative study and a systematic review of the literature

Introduction: The appropriate application of genomic technologies in healthcare is surrounded by many concerns. In particular, there is a lack of evidence on what constitutes an optimal genetic service delivery model, which depends on the type of genetic test and healthcare context considered. The present project aims to identify, classify, and evaluate delivery models for the provision of predictive genetic testing in Europe and in selected Anglophone extra-European countries (the USA, Canada, Australia, and New Zealand). It also sets out to survey the European public health community’s readiness to incorporate public health genomics into their practice. Materials and equipment: The project consists of (i) a systematic review of published literature and selected country websites, (ii) structured interviews with health experts on the genetic service delivery models in their respective countries, and (iii) a survey of European Public Health Association (EUPHA) members’ knowledge and attitudes toward genomics applications in clinical practice. The inclusion criteria for the systematic review are that articles be published in the period 2000–2015; be in English or Italian; and be from European countries or from Canada, the USA, Australia, or New Zealand. Additional policy documents will be retrieved from represented countries’ government-affiliated websites. The results of the research will be disseminated through the EUPHA network, the Italian Network for Genomics in Public Health (GENISAP), and seminars and workshops. Expected impact of the study on public health: The transfer of genomic technologies from research to clinical application is influenced not only by several factors inherent to research goals and delivery of healthcare but also by external and commercial interests that may cause the premature introduction of genetic tests in the public and private sectors. Furthermore, current genetic services are delivered without a standardized set of process and outcome measures, which makes the evaluation of healthcare services difficult. The present study will identify and classify delivery models and, subsequently, establish which are appropriate for the provision of predictive genetic testing in Europe by comparing sets of process and outcome measures. In this way, the study will provide a basis for future recommendations to decision makers involved in the financing, delivery, and consumption of genetic services

Transfer As a Component of the Transition of Adolescents with Sickle Cell Disease to Adult Care: Adolescent, Adult and Parent Perspectives

Purpose: There are no empirical studies which assess the transfer needs/concerns of adolescents and young adults with sickle cell disease (SCD) and their primary caretakers. The overall purpose of this research was to determine the issues, concerns, and expectations of adolescents, young adults and primary caretakers with regard to transfer to adult care. Methods: Participants were recruited from clinics and programs participating in the Duke/UNC Comprehensive Sickle Cell Program. Using a cross-sectional survey design, young adults (n = 60), adolescents (n = 36) and primary caretakers (n = 25) were administered the Sickle Cell Transfer Questionnaire (SCTQ). Results: Adolescents and young adults with SCD were primarily concerned about how they would pay for medical care and how they would be treated by adult providers. Caretakers were concerned about their teens leaving pediatric care and assuming responsibility for medical care. All three groups reported mixed emotions about leaving pediatric care. There was consensus among the respondents regarding the need for transfer programs and what they should offer. Bivariate analysis revealed that age, education level, and disease severity were statistically significant co-factors influencing the feelings, concerns and opinions of the study participants. Conclusion: Future longitudinal experimental research is needed to corroborate the results of this study and to assess the effectiveness of transition-related intervention programs for adolescents with SCD and their families

P4‐655: Addressing Ad Health Disparities Through A Cultural Lens

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/153187/1/alzjjalz201909021.pd

Professionalization theory, medical specialists and the concept of "national patterns of specialization"

Studies comparing particular medical specialties in different national settings have not appeared in the sociology of the professions literature. Consequently, little is known about how local contexts actually affect the professionalization process and medical specialization. Are certain determinants of specialization active in some countries and not in others? Can some determinants be said to be always active? Two recent independent studies of medical geneticists in, respectively, the UK and Canada present a unique opportunity to reflect on earlier social-theoretical discussions concerning the determinants of medical specialization in the context of country-specific organizational frameworks. Placed side-by-side, the two studies lend support to earlier research that emphasize, first, conceptual and technological innovations in medicine as driving specialty formation, and, second, the dominant position of physicians in the resulting division of medical labour. Beyond this, however, each study throws highlight on local influences as being important with respect to particular courses of action or inaction at the national and regional level. In the end, what appear to be coherent sets of diagnostic and counselling services from a unitary, global perspective can also be viewed as loose networks of resource dependencies, personnel, and organizations which can be re-configured within local health care delivery systems