BackgroundCanadian policies regarding the implementation and public coverage of non-invasive prenatal testing (NIPT) are heterogeneous and shifting, with NIPT being publicly covered for high-risk pregnancies in some provinces, but not others. Such a diverse and evolving policy landscape provides fertile ground for examining the preferences of pregnant women, their partners, and health professionals regarding the implementation and coverage of NIPT by the public healthcare system, as well as the factors influencing their preferences, which is what the present study does.MethodsIn this paper, we report the results of three-large scale Canadian surveys, in which 882 pregnant women, 395 partners of pregnant women, and 184 healthcare professionals participated.ResultsThe paper focuses on preferences regarding how and when NIPT should be used, as well as the factors influencing these preferences, and how coverage for NIPT should be provided. These are correlated with respondents’ levels of knowledge about Down syndrome and testing technologies and with their stated intended use of NIPT results.ConclusionSalient is the marked difference between the preferences of prospective parents and those of healthcare professionals, which has potential implications for Canadian policy regarding NIPT implementation and insurance coverage.Electronic supplementary materialThe online version of this article (10.1186/s12884-018-2153-y) contains supplementary material, which is available to authorized users.

Objective: This study sought to assess Canadian pregnant women's and their partners' preferences for information about non-invasive prenatal testing (NIPT). Methods: Pregnant women and their partners across Canada were surveyed as part of the Personalized Genomics for prenatal Aneuploidy Screening Using maternal blood (PEGASUS) study. Results: A total of 882 pregnant women and 395 partners participated. Women preferred being informed by a physician (77.2%). They preferred getting information ahead of time, except for information about resources for families with Down syndrome, which they preferred getting with test results. More than half thought that written consent is important (63.7%) and could decide whether to do NIPT on the day they received the information (54.9%). Women preferred to be informed of results by telephone (43.7%) or in person (28%), but they preferred in person if they were considered at high risk for Down syndrome on the basis of the results (76%). The partner was the person whose input was considered most important (62.6%). Partners' preferences were similar, except that partners tended to want information later (at the time of the test or with the results) and felt that their opinion was not considered as highly by health professionals. Conclusion: Canadian women want information about NIPT early, in person, by a knowledgeable physician. Partners also want to be informed and involved in the decision-making process. Résumé Objectif : Cette étude visait à déterminer les préférences des femmes enceintes et de leur partenaire quant à la communication de renseignements relatifs au test prénatal non effractif (TPNE). Méthodologie : Des femmes enceintes et leurs partenaires canadiens ont été sondés dans le cadre de l'étude PEGASUS (Génomique personnalisée pour le dépistage prénatal de l'aneuploïdie à l'aide du sang maternel). Résultats : Au total, 882 femmes enceintes et 395 partenaires ont répondu au sondage. Selon ce dernier, les femmes préfèrent que les renseignements viennent d'un médecin (77,2 %), et préfèrent les recevoir à l'avance, sauf ceux sur les ressources destinées aux familles touchées par le syndrome de Down, qu'elles aiment mieux obtenir avec les résultats du test. Plus de la moitié des répondantes estiment que l'obtention d'un consentement écrit est importante (63,7 %) ou être en mesure de prendre une décision relative au TPNE le jour même où elles reçoivent les renseignements (54,9 %). Les femmes aiment également mieux recevoir les résultats du test par téléphone (43,7 %) ou en personne (28 %), mais préfèrent les recevoir en personne s'ils font état d'un risque élevé de syndrome

Background: Noninvasive prenatal testing is a recent technology that provides some genetic information about the fetus through the analysis of cell-free fetal DNA circulating in maternal blood. We aimed to identify the benefits, challenges and guiding ethical principles most relevant to the clinical integration of noninvasive prenatal testing in Canada, according to experts throughout the country. Methods: We conducted a 3-round Delphi study involving Canadian experts of contemporary discussions about the ethical and societal implications of prenatal testing and genomic technologies. In round 1, we asked participants to identify clinical benefits and challenges related to the implementation of noninvasive prenatal testing in Canada, and the ethical principles they think should guide it. In round 2, we asked participants to select the most important elements stated by their peers. In round 3, participants were informed of the aggregated results from round 2, and invited to revise or confirm their selection. Results: Round 1 had a participation rate of 20.2%, and involved 61 participants. Subsequent rounds 2 and 3 had retention rates of 95.1% (n = 58) and 84.5% (n = 49), respectively. Through these discussions, we identified 3 lists of benefits (n = 10), challenges (n = 27), and ethical principles (n = 16) prioritized by Canadian experts as being most relevant to the implementation of noninvasive prenatal testing in Canada. Interpretation: Although multiple and diverse potential issues were identified, Canadian experts agreed on 2 sets of requirements for the responsible implementation of noninvasive prenatal testing in Canada. Interdisciplinary appraisals may be instrumental to responsible policy-making related to the implementation of noninvasive prenatal testing in Canada.

Background: Hemodialysis patients have faced unique challenges during the COVID-19 pandemic. They face high risk of death if infected, and have unavoidable exposure to others when they come to hospital three times weekly for their life-saving treatments. The objective of this study was to gain a better understanding of the scope and magnitude of the impacts of the pandemic on the lived experience of patients receiving in-center hemodialysis. Methods: We conducted semi-structured interviews with 22 patients who were undergoing dialysis treatments in five hemodialysis centers in Montreal from Nov 2020 to May 2021. Interviews were transcribed and then analyzed using thematic content analysis. Results: Most participants reported no negative impacts of the COVID-19 pandemic on their hemodialysis care. Several patients had negative feelings related to forced changes in their dialysis schedules, and this was especially pronounced for indigenous patients in a shared living situation. Some patients were concerned about contracting COVID-19, especially during public transportation, while others expressed confidence that the physical distancing and screening measures implemented at the hospital would protect them and their loved ones. Some participants reported that masks negatively impacted their interactions with healthcare workers, and for many others, the pandemic was associated with feelings of loneliness. Finally, some respondents reported some positive impacts of the pandemic, including use of telemedicine, and creating a sense of solidarity. Conclusion: Patients undergoing hemodialysis reported no negative impacts on their medical care, but faced significant disruptions in their routines and social interactions due to the COVID-19 pandemic. Nevertheless, they showed great resilience in their ability to adapt to the new reality of their hemodialysis treatments. We also show that studies focused on understanding the lived experiences of indigenous patients and patients from different ethnic backgrounds are needed in order reduce inequities in care during public health emergencies.

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Background: Chemotherapy and/or radiotherapy treatments may cause premature ovarian failure and irreversible loss of fertility. In the context of childhood cancers, it is now acknowledged that possible negative effects of therapies on future reproductive autonomy are a major concern. While a few options are open to post-pubertal patients, the only immediate option currently open to pre-pubertal girls is cryopreservation of ovarian tissue and subsequent transplantation. The aim of the study was to address a current gap in knowledge regarding the offer of fertility preservation by Ovarian Tissue Cryopreservation (OTC) for prepubescent girls with cancer, and to explore current practices and attitudes of Canadian, French and Moroccan pediatric heme oncologists. The comparative perspective is relevant since legal frameworks surrounding fertility preservation and funding offered by the healthcare system vary greatly. Methods: An online survey was sent to the 45 pediatric oncology centers in Canada, France and Morocco. Results: A total of 39 centers responded (86.6%). OTC is offered by almost all pediatric heme oncologists in France (98%), very few in Canada (5%), and none in Morocco (0%). For pediatric hematologists/oncologists who do not propose fertility preservation in Canada, the reasons are: the technique is still experimental (54%), it is not available locally (26%) and cost of the technique for the family (14%). 97% of Canadian and 100% of Moroccan pediatric hematologists/oncologists think OTC should be funded by the healthcare system as it is in France and in the province of Quebec in Canada. Conclusions: The results of this study show tremendous diversity in the provision of OTC across countries, whereby its offer is correlated with legislation and funding. We argue that the current reality, in which this technology is often not offered to families, raises ethical issues related to justice and equity of access, as well as informed consent and future reproductive autonomy.

Background Kidney transplantation is the best treatment for patients with end‐stage renal disease. The decision to accept a kidney from a deceased donor can be a difficult one, especially when organs from high KDPI (>85%) donors are offered. This study aims to capture the perspectives of transplant nephrologists (TNs) on the decision‐making process when an organ is offered. Methods Fifteen Canadian TNs took part in semi‐structured interviews between December 2017 and April 2018. The interviews were digitally recorded, transcribed, and analyzed using the thematic analysis method. Results The decision to accept a deceased‐donor kidney offer is a medical one for the participants. However, transplant candidates could be involved when the offered kidney is from a donor with a KDPI >85% or increased infectious risk donor. The TNs’ past experience, comprehensive data on the donor, and education of the transplant candidate could facilitate the decision‐making process. A decision aid could also facilitate the decision‐making process, but different concerns should be addressed. Conclusion Although accepting a deceased‐donor organ offer is often viewed as an opportunity for shared decision‐making, participants in this study viewed the decision to accept or refuse an offer as a medical decision with little room for patient participation.

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