Children, adolescent and young adult (CAYA) males with cancer are at an increased risk for infertility, if their treatment adversely impacts reproductive organ function. Future fertility is a primary concern of patients and their families. Variations in clinical practice are barriers to the timely implementation of fertility preserving interventions. The PanCareLIFE consortium in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) reviewed the current literature and developed a clinical practice guideline (CPG) for fertility preservation in male CAYA cancer patients diagnosed before age 25 years, including guidance on risk assessment and available fertility preservation methods. The GRADE (Grading of Recommendations Assessment, Development and Evaluation) methodology was used to grade the evidence and recommendations. Recognizing the need for global consensus, this CPG used existing evidence and international expertise to develop transparent, easy-touse and rigorously-developed recommendations that can facilitate the care of CAYA males with cancer at risk of fertility impairment and enhance their quality of life.
BackgroundResearch in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement.DiscussionWhile empirical and normative-ethical research projects have quality criteria in their own right, we focus on the specific quality criteria for EE research. We develop a tentative list of quality criteria – a “road map” – tailored to interdisciplinary research in EE, to guide assessments of research quality. These quality criteria fall into the categories of primary research question, theoretical framework and methods, relevance, interdisciplinary research practice and research ethics and scientific ethos.SummaryEE research is an important and innovative development in bioethics. However, a lack of standards has led to concerns about and even rejection of EE by various scholars. Our suggested orientation list of criteria, presented in the form of reflective questions, cannot be considered definitive, but serves as a tool to provoke systematic reflection during the planning and composition of an EE research study. These criteria need to be tested in different EE research settings and further refined.
Extremely preterm infants born before a gestational age (GA) of 25 weeks are in a prognostic gray zone, 1 which means that outcomes are poor but not hopeless and that life-sustaining treatments are not obligatory. Treatment decisions are value-laden and challenging 2 and ought to be shared between parents and physicians while imperatively aligned with parental preferences. 3,4 When counseling parents, physicians commonly present numerical outcome estimates 5 and may assume that parents derive their preferences from them. However, it is unknown whether probabilistic data affect parents' choices in prognostic gray zones. 6 Here, we hypothesized that better or worse neonatal outcome estimates do not affect expectant mothers' preferences for life-sustaining treatments.
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