Article
Pediatrics
Reyes Boceta, Olga Martinez-Casares, Marta Albert
Summary: This study analyzed the ethical and legal situation of consent by minors and found that the MacArthur Competence Assessment Tool could be appropriate for assessing the informed consent competence of minors aged 9-12 years old.
ANALES DE PEDIATRIA
(2021)
Article
Psychiatry
Abhijit Nadkarni, Sheena Wood, Ankur Garg, Danielle Fernandes, Ethel D'Souza, Urvita Bhatia
Summary: The study found that the video-supplemented informed consent process was not superior to the traditional paper-based informed consent process in any domain. Further research is needed to identify contextually relevant best practices for the informed consent process, especially in settings with participants having limited education and in research involving people with mental health or substance use problems.
ASIAN JOURNAL OF PSYCHIATRY
(2021)
Article
Surgery
Jasmine Panton, Brendin R. Beaulieu-Jones, Jayson S. Marwaha, Alison P. Woods, Drashko Nakikj, Nils Gehlenborg, Gabriel A. Brat
Summary: This study investigated how surgeons assess and communicate risks in surgery, with a focus on the role of risk calculators. The results showed that non-clinical factors, such as health and risk literacy, affect how surgeons evaluate and communicate risks, which differs from traditional risk calculators. The study also highlighted the misalignment between surgeons' perception of risk communication and patient priorities.
AMERICAN JOURNAL OF SURGERY
(2023)
Article
Psychiatry
Timo Istace
Summary: This article discusses the possibility of communicating with patients suffering from impaired consciousness in order to obtain their informed consent. It first presents the current state-of-the-art in neuroimaging research that shows the potential for communication with some of these patients. It then explores how obtaining informed consent from these patients is possible, considering the specificities and limitations of communication via neuroimaging. Lastly, it analyzes the ethical and legal considerations that need to be addressed before introducing neuroimaging as a means to obtain informed consent, and examines the concept of supported decision-making and its relevance to the use of neurotechnology in supporting minimally conscious patients' ability to make decisions about their own medical treatment.
FRONTIERS IN PSYCHIATRY
(2022)
Review
Ethics
Nina Kilkku, Arja Halkoaho
Summary: Background research on genomics and biobank activities is increasing internationally. In mental health research, concerns about participants' vulnerability and capacity for informed consent can impact recruitment. This study focuses on nurses' perspectives on informed consent practices in genomic research on mental health, highlighting themes such as consent capacity, emotional responses to participation, and factors influencing decisions to participate.
Article
Surgery
David Fischkoff, Kenneth Prager, Joyeeta Dastidar, Lydia Dugdale, Gerald Neuberg, Samantha Nemeth, Katherine Fischkoff
Summary: The issue of proceeding with medical intervention over a patient's objection is common but lacks ethical guidelines. A retrospective study on consultations for treatment over objection found that logistical barriers and imminent harm to the patient were key factors in determining whether to proceed against the objection.
JOURNAL OF THE AMERICAN COLLEGE OF SURGEONS
(2021)
Article
Hospitality, Leisure, Sport & Tourism
Katherine A. Tamminen, A. Bundon, B. Smith, M. H. McDonough, Z. A. Poucher, M. Atkinson
Summary: This paper aims to provide guidance for researchers in the sport and exercise sciences on engaging in open qualitative research practices, with nine core values identified as considerations. Specific considerations are provided for researchers in areas such as types of data and participant consent. These considerations are intended to help qualitative researchers make informed decisions and plan for implementation of open science practices.
QUALITATIVE RESEARCH IN SPORT EXERCISE AND HEALTH
(2021)
Article
Ethics
Scott Y. H. Kim, Noah C. Berens
Summary: The debate over whether the assessment of decision-making capacity (DMC) should be risk sensitive, meaning the threshold for DMC should vary with risk, has been going on for almost five decades. Some find it intuitive and commonsense that DMC assessments should be risk sensitive. Others argue that this idea is paternalistic or incoherent, and that the riskiness of a decision should increase the scrutiny in evaluating DMC, not the threshold for DMC. In response to these concerns, we provide a comprehensive account of how risk-sensitive DMC is coherent, avoids paternalism, and best fulfills the epistemic goal of DMC evaluations.
HASTINGS CENTER REPORT
(2023)
Article
Multidisciplinary Sciences
Ammal M. Metwally, Hala A. Amer, Hend I. Salama, Safaa I. Abd El Hady, Raefa R. Alam, Ahmed Aboulghate, Hanan A. Mohamed, Hanan M. Badran, Amal A. Saadallah, Marwa M. El-Sonbaty, Eman Eltahlawy, Walaa Saad, Amira Mohsen, Ghada A. Abdel-Latif, Asmaa M. Fathy, Amal I. Hassanain, Abdelmoneim Eldali
Summary: The study found that there is significant variation in IC implementation across different healthcare facilities in Egypt. The top three purposes of current IC practices include helping patient/guardian decide, documenting patient's/guardian's decision, and having shared decision. The perceived purposes for IC practices in the future include informing the patient/guardian, ensuring patient/guardian understand, and documenting patients/guardians decisions.
Article
Clinical Neurology
Sandra R. Dewar, Huibrie C. Pieters, Itzhak Fried
Summary: The process of consenting to surgery for drug-resistant temporal lobe epilepsy is a significant treatment milestone for patients, involving understanding and overcoming risks, family-centered decision-making, and building decisional confidence. Despite challenges, patients often express satisfaction with the information provided during the surgical visit, highlighting the importance of informed consent as a systematic, structured interdisciplinary process over time.
FRONTIERS IN NEUROLOGY
(2021)
Review
Education, Scientific Disciplines
Victoria J. Clemett, Mary Raleigh
Summary: The study evaluated the validity and reliability of approaches to assessing clinical decision-making skills of nurses, finding that multi-level rubric and checklist approaches were effective in practice and simulation settings. Written and case study examinations were also effective, but students tended to rate themselves higher in self-assessment. The best approach for final year students was recommended to be multiple low-stakes assessments in practice environments using a multi-level observational rubric, with expert practice assessors undergoing regular training and peer review for reliability.
NURSE EDUCATION TODAY
(2021)
Article
Ethics
Kyoko Tanaka, Maoko Hayakawa, Makiko Mori, Naoko Maeda, Masako Nagata, Keizo Horibe
Summary: The study examines the difficulties in explaining disease and obtaining informed consent for adolescent cancer patients. A questionnaire survey was conducted with physicians who have been treating adolescent cancer patients for at least five years. The results show the challenges in explaining the disease and treatment to patients and parents, as well as the correlation between difficulties in obtaining informed consent and patient's refusal of medical treatment.
BMC MEDICAL ETHICS
(2023)
Review
Nursing
Joy Kloester, Suzanne Willey, Helen Hall, Gabrielle Brand
Summary: This review of 13 studies found that midwives have a strong desire to facilitate women's informed decision-making, but there are multiple barriers in actual practice, including lack of specific knowledge and training, fear of blame and litigation, structural constraints, and multidisciplinary philosophical disparities.
Review
Medicine, General & Internal
Gabriele Mandarelli, Florenzo Iannone, Stefano Ferracuti, Ignazio Grattagliano, Marcello Benevento, Biagio Solarino, Davide Ferorelli, Roberto Catanesi
Summary: The study reviewed the literature on biological agents and found that there were no specific studies addressing the issue of informed consent in patients receiving biological agents. However, the association between biological agents and serious infections or malignancies needs to be disclosed in the informed consent process, and ethical and clinical issues related to experimenting with new agents with potential serious adverse effects deserve attention.
EUROPEAN JOURNAL OF CLINICAL INVESTIGATION
(2022)
Article
Clinical Neurology
Norio Sugawara, Norio Yasui-Furukori, Sonoko Yamada, Mei Aoki, Yoshitaka Takeuchi, Kensuke Miyazaki, Kazutaka Shimoda
Summary: This study evaluates the decision-making capacity of older institutionalized patients with schizophrenia and determines its association with cognitive impairment. The understanding summary scores are positively correlated with attention and verbal fluency, and negatively correlated with age and duration of illness. Appreciation and reasoning scores are negatively correlated with age. Age, sex, and verbal fluency are associated with understanding scores. Psychiatric assessment and involvement in the treatment process are necessary.
NEUROPSYCHIATRIC DISEASE AND TREATMENT
(2022)
Article
Immunology
Maartje Blom, Robbert G. M. Bredius, Marleen E. Jansen, Gert Weijman, Evelien A. Kemper, Clementien L. Vermont, Iris H. I. M. Hollink, Willem A. Dik, Joris M. van Montfrans, Marielle E. van Gijn, Stefanie S. Henriet, Koen J. van Aerde, Wouter Koole, Arjan C. Lankester, Eugenie H. B. M. Dekkers, Peter C. J. Schielen, Martine C. de Vries, Lidewij Henneman, Mirjam van der Burg
Summary: The majority of parents expressed support for NBS for SCID from both a public health and personal perspective, with emphasis on the emotional impact of an abnormal screening result. The study highlights the importance of uniform follow-up protocols and adequate information provision to address (long-term) stress and anxiety experienced by parents during and after referral. Moving towards universal SCID screening for all infants requires a close partnership of stakeholders, immunologists, geneticists, and pediatricians-immunologists in different countries.
JOURNAL OF CLINICAL IMMUNOLOGY
(2021)
Review
Peripheral Vascular Disease
Eva L. van der Linden, Brandon N. Couwenhoven, Erik J. A. J. Beune, Joost G. Daams, Bert-Jan H. van den Born, Charles Agyemang
Summary: The study found differences in hypertension awareness, treatment, and control levels between ethnic minority populations (EMPs) and European host populations (EHPs). African origin populations were more likely to be aware and treated for hypertension, but less likely to have their blood pressure controlled. South Asian populations were more likely to be aware of hypertension, but had similar treatment and control rates compared to EHPs.
JOURNAL OF HYPERTENSION
(2021)
Article
Oncology
Mirjam Vreugdenhil, Marjolijn D. Akkermans, Rachel P. L. van Swelm, Coby M. Laarakkers, Euphemia C. A. M. Houdijk, Boudewijn Bakker, Agnes Clement-de Boers, Danielle C. M. van der Kaay, Martine C. de Vries, M. Claire Woltering, Dick Mul, Johannes B. van Goudoever, Frank Brus
Summary: This study investigated the relationship between hepcidin concentrations and iron status in children with type 1 diabetes, finding that hepcidin levels were significantly higher in patients with functional iron deficiency compared to those with absolute iron deficiency, but did not differ from those with normal iron status. Multiple hepcidin measurements over time may be more useful in assessing functional iron deficiency in children with type 1 diabetes.
PEDIATRIC HEMATOLOGY AND ONCOLOGY
(2021)
Review
Pediatrics
R. O. Wijngaarde, I. Hein, J. Daams, J. B. Van Goudoever, D. T. Ubbink
Summary: Based on the United Nations Conventions on the Rights of the Child, children have the right to participate in matters concerning their wellbeing. Studies have shown that chronically and/or critically ill children can benefit from decision support tools to enhance their involvement in pediatric shared decision-making, leading to increased knowledge and satisfaction, and reduced decisional conflicts.
EUROPEAN JOURNAL OF PEDIATRICS
(2021)
Review
Psychiatry
Marilon van Doorn, Laurens A. Nijhuis, Mees D. Egeler, Joost G. Daams, Arne Popma, Therese van Amelsvoort, Carla McEnery, John F. Gleeson, Ferko G. Ory, Kate A. Avis, Emma Ruigt, Monique W. M. Jaspers, Mario Alvarez-Jimenez, Dorien H. Nieman
Summary: Recent research on indicated online preventive interventions for youth aged 12-25 experiencing early stages of mental health complaints showed promising results in reducing various mental health issues and increasing positive mental health indicators. Online interventions with a combination of clinical and peer moderation appeared to have the most stable and highest effect sizes. However, methodological shortcomings and a lack of transdiagnostic approaches were identified in the included studies.
FRONTIERS IN PSYCHIATRY
(2021)
Review
Computer Science, Information Systems
Leonie Westerbeek, Kimberley J. Ploegmakers, Gert-Jan De Bruijn, Annemiek J. Linn, Julia C. M. van Weert, Joost G. Daams, Nathalie van der Velde, Henk C. van Weert, Ameen Abu-Hanna, Stephanie Medlock
Summary: This systematic literature review provides an overview of barriers and facilitators for the acceptance of medication-related CDSS among clinicians, categorized within the HOT-fit model. The most frequently reported factors relate to the usefulness and relevance of information, as well as the ease of use and efficacy of the system. These results can serve as a foundation for future studies in developing medication-related CDSS.
INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS
(2021)
Review
Health Care Sciences & Services
Margarita Ravinskaya, Jos H. Verbeek, Miranda Langendam, Joost G. Daams, Carel T. J. Hulshof, Ira Madan, Suzanne M. M. Verstappen, Marije Hagendijk, Regina Kunz, Jan L. Hoving
Summary: This study aimed to investigate how work participation outcomes are measured in randomized controlled trials internationally and across disciplines. A total of 269 trials reporting on 435 work participation outcomes from 2014 to 2019 were identified, with outcomes grouped into four main categories: employment status, absence from work, at-work productivity loss, and employability. Extensive variability existed in the measurement methods and instruments used across all categories, highlighting the need for a Core Outcome Set for work participation.
JOURNAL OF CLINICAL EPIDEMIOLOGY
(2022)
Article
Pediatrics
Maria C. den Boer, Mirjam Houtlosser, Ruben S. G. M. Witlox, Henriette A. van Zanten, Martine C. de Vries, Arjan B. te Pas
Summary: This study explores parental experiences with and perceptions of consent for delivery room (DR) studies. Most parents considered being approached for DR studies as valuable, attributed to appropriate timing and communication, compassion, and non-obtrusive investigators. Parents generally decided to accept or decline study participation based on perceived risk. There was no consensus among parents on deferred consent for DR studies running at the NICU, but deferred consent was considered appropriate for observational studies. Parental misunderstanding of various aspects of DR studies was common. Understanding parental perceptions of consent for DR studies can help improve parental consent procedures.
Article
Environmental Sciences
Merlijn Meynen, Cristina Colonnesi, Marielle E. Abrahamse, Irma Hein, Geert-Jan J. M. Stams, Ramon J. L. L. Lindauer
Summary: The study examined the impact of parental mind-mindedness on the outcomes of Parent-Child Interaction Therapy (PCIT). Results showed that parents with medium-high level of mind-mindedness displayed more improvement in parenting skills and better outcomes in PCIT.
INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
(2022)
Article
Orthopedics
Bert van de Wijdeven, Bart Visser, Joost Daams, Paul P. F. M. Kuijer
Summary: Work-related musculoskeletal disorders (WMSDs) are an important topic in occupational health. This study conducted a scoping review to identify and categorize interventions for individual working practice (IWP) aimed at reducing exposure to physical ergonomic risk factors. Ultimately, eight overarching categories of interventions for IWP were identified, providing a starting point for the development and evaluation of effective interventions to prevent WMSDs.
BMC MUSCULOSKELETAL DISORDERS
(2023)
Article
Cardiac & Cardiovascular Systems
Wouter B. van Dijk, Ewoud Schuit, Rieke van der Graaf, Rolf H. H. Groenwold, Sara Laurijssen, Barbara Casadei, Marco Roffi, Seye Abimbola, Martine C. de Vries, Diederick E. Grobbee
Summary: This study evaluated the feasibility of implementing ESC guidelines on general cardiology in 102 countries and found that compliance varied based on the country's income level. High-income countries had better compliance, while low-income countries had lower compliance, largely due to lack of reimbursement and financial barriers.
EUROPEAN HEART JOURNAL
(2023)
Article
Psychology, Clinical
Lieke H. Kooij, Thimo M. van der Pol, Joost G. Daams, Irma M. Hein, Ramon J. L. Lindauer
Summary: This study aims to extract common elements from evidence-based trauma therapies for children and adolescents. A diverse group of Dutch trauma therapists used an existing and modified Delphi method to create a common element list. The study found a substantial overlap of techniques and mechanisms across the five evidence-based trauma therapies, indicating strong similarities between the therapies. These identified elements provide a basis for research and clinical practice in tailored trauma therapies for individual children and their support systems.
EUROPEAN JOURNAL OF PSYCHOTRAUMATOLOGY
(2022)
Review
Pediatrics
Kim Kamphorst, Emmy Van Daele, Arine M. Vlieger, Joost G. Daams, Jan Knol, Ruurd M. van Elburg
Summary: This systematic review found that the use of antibiotics in early life might increase the risk of gastrointestinal disorders later in childhood in term born children, particularly in inflammatory bowel disease and coeliac disease. Moderate evidence was also found for eosinophilic esophagitis, while no association was found with functional constipation in the first year.
BMJ PAEDIATRICS OPEN
(2021)
Article
Pediatrics
Marije A. Brouwer, Els L. M. Maeckelberghe, Agnes van der Heide, Irma M. Hein, Eduard A. A. E. Verhagen
Summary: This study examines the barriers that parents experience in the communication of bad news, providing practical insights on how to improve the communication process to better meet the needs of parents. It highlights the importance of timely communication and practical aspects in breaking bad news to parents.
ARCHIVES OF DISEASE IN CHILDHOOD
(2021)