Identifying patient values impacting the decision whether to participate in early phase clinical cancer trials: a systematic review

Background For many patients with advanced cancer, the decision whether to participate in early phase clinical trials or not is complex. The decision-making process requires an in-depth discussion of patient values. We therefore aimed to synthesize and describe patient values that may affect early phase clinical trial participation. Methods We conducted a systematic search in seven electronic databases on patient values in relation to patients’ decisions to participate in early phase clinical cancer trials. Results From 3072 retrieved articles, eleven quantitative and five qualitative studies fulfilled our inclusion criteria. We extracted ten patient values that can contribute to patients’ decisions. Overall, patients who seek trial participation usually report hope, trust, quantity of life, altruism, perseverance, faith and/or risk tolerance as important values. Quality of life and humanity are main values of patients who refuse trial participation. Autonomy and social adherence can be reported by both trial seekers or refusers, dependent upon how they are manifested in a patient. Conclusions We identified patient values that frequently play a role in the decision-making process. In the setting of discussing early phase clinical trial participation with patients, healthcare professionals need to be aware of these values. This analysis supports the importance of individual exploration of values. Patients that become aware of their values, e.g. by means of interventions focused on clarifying their values, could feel more empowered to choose. Subsequently, healthcare professionals could improve their support in a patients’ decision-making process and reduce the chance of decisional conflict

Cosmic shear bispectrum from second-order perturbations in General Relativity

Future lensing surveys will be nearly full-sky and reach an unprecedented depth, probing scales closer and closer to the Hubble radius. This motivates the study of the cosmic shear beyond the small-angle approximation and including general relativistic corrections that are usually suppressed on sub-Hubble scales. The complete expression of the reduced cosmic shear at second order including all relativistic effects was derived in [1]. In the present paper we compute the resulting cosmic shear bispectrum when all these effects are properly taken into account and we compare it to primordial non-Gaussianity of the local type. The new general relativistic effects are generically smaller than the standard non-linear couplings. However, their relative importance increases at small multipoles and for small redshifts of the sources. The dominant effect among these non standard corrections is due to the inhomogeneity of the source redshift. In the squeezed limit, its amplitude can become of the order of the standard couplings when the redshift of the sources is below 0.5. Moreover, while the standard non-linear couplings depend on the angle between the short and long mode, the relativistic corrections do not and overlap almost totally with local type non-Gaussianity. We find that they can contaminate the search for a primordial local signal by f_NL>10.Comment: 41 pages, 8 figures, some modifications in the analysis of the redshift dependence in section 5, 1 new figur

Linguistic metaconcepts can improve grammatical understanding in L1 education evidence from a Dutch quasi-experimental study

This is the final version. Available on open access from Public Library of Science via the DOI in this recordData Availability: All relevant data are within the paper and its Supporting Information files. Data can also be found on the OSF repository at: DOI 10.17605/OSF.IO/EGKJD (https://osf.io/egkjd/?view_only=None).This mixed-method quasi-experimental study examined whether metaconceptual grammar teaching impacts on (a) students’ L1 grammatical understanding, (b) their ‘blind’ use of grammatical concepts and (c) their preference of using explicit grammatical concepts over everyday concepts in explaining grammatical problems. Previous research, involving single group pre-postintervention designs, found positive effects for metaconceptual interventions on secondary school students’ grammatical reasoning ability, although a negative side effect seemed to be that some students started using grammatical concepts ‘blindly’ (i.e., in an inaccurate way). While there are thus important clues that metaconceptual grammar teaching may lead to increased grammatical understanding, there is a great need for more robust empirical research. The current study, involving 196 Dutch 14-year old pre-university students, is a methodological improvement of previous work, adopting a switching replications design. Bayesian multivariate analyses indicate medium to large effects from the metaconceptual intervention on students’ grammatical understanding. The study found a similar effect of the intervention on students’ ability to use explicit grammatical concepts over everyday concepts in tackling grammatical problems. No evidence for increased ‘blind’ concept use as a negative byproduct of the intervention was found. Additional qualitative analyses of in-intervention tasks provided further evidence for the effectiveness of metaconceptual interventions, and seemed to indicate that cases of blind concept use, rather than being a negative side effect, might actually be part of a gradual process of students’ growing understanding of grammatical (meta)concepts. We discuss these findings in relation to previous work and conclude that linguistic metaconcepts can improve L1 grammatical understanding.Netherlands Organisation of Scientific Research (NWO

Realizing better doctor-patient dialogue about choices in palliative care and early phase clinical trial participation: towards an online value clarification tool (OnVaCT)

Background: Patients with advanced cancer for whom standard systemic treatment is no longer available may be offered participation in early phase clinical trials. In the decision making process, both medical-technical information and patient values and preferences are important. Since patients report decisional conflict after deciding on participation in these trials, improving the decision making process is essential. We aim to develop and evaluate an Online Value Clarification Tool (OnVaCT) to assist patients in clarifying their values around this end-of-life decision. This improved sharing of values is hypothesized to support medical oncologists in tailoring their information to individual patients’ needs and, consequently, to support patients in taking decisions in line with their values and reduce decisional conflict. Methods: In the first part, patients’ values and preferences and medical oncologists’ views hereupon will be explored in interviews and focus groups to build a first prototype OnVaCT using digital communication (serious gaming). Next, we will test feasibility during think aloud sessions, to deliver a ready-to-implement OnVaCT. In the second part, the OnVaCT, with accompanied training module, will be evaluated in a pre-test (12–18 months before implementation) post-test (12–18 months after implementation) study in three major Dutch cancer centres. We will include 276 patients (> 18 years) with advanced cancer for whom standard systemic therapy is no longer available, and who are referred for participation in early phase clinical trials. The first consultation will be recorded to analyse patient-physician communication regarding the discussion of patients’ values and the decision making process. Three weeks afterwards, decisional conflict will be measured. Discussion: This project aims to support the discussion of patient values when considering participation in early phase clinical trials. By including patients before their first appointment with the medical oncologist and record

Prediction of disease severity in multiple acyl-CoA dehydrogenase deficiency: A retrospective and laboratory cohort study

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