Mental health problems among children and youths are common and have numerous negative consequences for young people and their social network. Therewith, these problems pose a social issue. GPs... Show moreMental health problems among children and youths are common and have numerous negative consequences for young people and their social network. Therewith, these problems pose a social issue. GPs play an important role in early detection and management of these problems. Insight into their clinical decision- making and, as a result, way of working would be helpful to develop methods for providing children and youths with the help they need. Previous literature suggest many doctors(-to-be), of whom some are or will become GPs, have (lived) experience related to mental health problems themselves. Previous studies also suggest having (lived) experience influences GPs’ clinical decision-making, and consequently their way of working. It would have clinical benefits for GPs and patients to explore this process. This thesis is constructed of four different articles, each contributing to answering the main question: ‘How do GPs decide on child and youth mental health problems and what is the influence of their(lived) experience regarding these problems on this decision?’ Article 1: How do GPs make decisions regarding mental health problems in children and youths? For answering this subquestion, a mixed methods design was used: interviews among 14 and an online survey among 15 GPs. GPs were asked about their clinical decision-making process on children and youths with mental health problems using three vignettes describing children and youths with mental health problems representative of clinical practice. The findings suggest GPs differ with regards to their decision- making regarding child and youth mental health problems, and that their decision-making is influenced by factors related to 1) the GP, for example if the GP approaches the problem somatically or psychosocially, if the GP considers themself competent enough to solve the problem with regards to their interest in and knowledge about youth mental health care, 2) the child and its social context, for example if the child or youth has psychiatric (co)morbidity, if the problem is likely to solve itself and if the problem could be assessed as being complex and 3) the GPs’ collaboration with other youth care providers, for example if GPs have existing collaboration agreements with these youth care providers and how they view their collaboration. Article 2: Can GPs’ decisions on child and youth mental health problems be supported by means of a decision-support method?For answering this subquestion, a literature search was conducted to retrieve studies that involved clinical decision support methods for GPs’ clinical decision-making related to mental health problems among children and youths. This systematic review yielded 25 studies on 18 clinical decision-support methods, divided into computer-based methods (such as MyGRaCE), telecommunication methods (such as CAP PC) and methods with a combination of components related to computer-based methods and telecommunication methods (such as Collaborative care for depression intervention). The article provides insight into (possible) beneficial clinical implications of clinical decision-support methods. These methods could give more insight into possible mental health problems, they could provide structured information which can be used by the GP and/or parents during their next consultation with the child or youth, and they could also decrease time and costs spent by the primary care practice and the GP. There are also less beneficial clinical implications, such as an inability for some computer-based methods to be used in emergency situations, when time is short, problems for children and youths when using computer-based methods because of their mental status, and impediment to discuss certain topics freely because the decision-support method gives too much direction to the consultation. The article describes certain considerations for GPs when choosing a decision-support method, which may indirectly have a positive impact on the implementation of such methods into general practice. For example, the GP can take into account their way of working, user flexibility of the method for the GP, the child/youth and their parent(s) with regards to understandability and ease of use, if the GP already uses a clinical decision-support method, if the GP already has collaboration agreements with youth care providers, as well as their own attitude and knowledge regarding mental health problems among children and youths.Article 3: Do doctors-to-be, among whom future GPs, have (lived) experience regarding mental health problems? Study focused on preclinical medical students.For answering this subquestion, self-report questionnaires were sent to 1311 preclinical medical students of Leiden University Medical Center to measure burnout-, depression- and anxiety-related symptoms. The article concludes that symptoms related to mental health problems are common among preclinical medical students. Burnout-related symptoms were found in 46%, depression-related symptoms in 27% and anxiety- related symptoms in 29% of preclinical medical students. Burnout-related symptoms among preclinical medical students were correlated with a sleep duration of less than 6 hours per night, low happiness and a high need for recovery after a day of study. Depression- and anxiety-related symptoms were mainly correlated with low optimism, low happiness, and a high need for recovery after a day of study. These findings suggest preclinical medical students are at risk to develop mental health problems, which can inspire universities to come up with preventive interventions.Article 4: Do doctors-to-be, among whom future GPs, have (lived) experience regarding mental health problems? Study focused on medical interns.For answering this subquestion, self-report questionnaires were sent to 709 medical interns of the same institution mentioned in article 3 to measure burnout-related symptoms. Burnout-related symptoms were found in 30% of medical interns. Burnout-related symptoms among medical interns were related to low dedication with regards to work, a high work pace and quantity, a high need for recovery after a day of work and low optimism. These correlates could be used to prevent mental health problems among medical interns by making adjustments to the medical curriculum. The articles of this thesis suggest GPs’ decision-making on mental health problems in children and youths is multifactorial and consists of objective and subjective components. Furthermore, decision-making seems to differ between GPs, which may be an explanation why there are a variety of clinical decision support methods. Some clinical decision support methods have been implemented in the context of research into general practice, like MyGRaCE, CHICA, Mobiletype, Youth StepCare, consultation-liason method(between GPs and psychiatrists), telepsychiatry consultation practice and the MC3 Program. A clinical implication is GPs can choose a decision-support method which match their personal style of clinical decision-making. However, the validity, trustworthiness and usability of available methods need to be further explored. A clinical implication with regards to medical students’ mental health comprises universities provide accessible proactive mental support to preclinical medical interns and medical interns, because many do not seek help themselves. Furthermore, universities could stimulate a stigma-reducing educational environment, for example in collaboration with the department of (Child- and Adolescent) Psychiatry. Therefore, medical students could be equipped with effective strategies to cope with mental health problems. Also, they might be made aware of their vulnerability, so that they may know their subjectivity and use their personal experiences in practice. The results of this thesis invite more (longitudinal) research on the diagnostic precision, predictive value and cost-efficiency of clinical decision-support methods. Furthermore, more research is needed on the prevalence of mental health problems among graduated doctors, like GPs, and possible effects of these problems on their way of working, their decision-making and their contacts with patients. Strengths of this thesis include exploration of a relatively unknown research area, namely GPs’ clinical decision-making regarding mental health problems among children and youths. Therefore, this thesis used multiple research methodologies and it used a practical scope. This thesis also contains several limitations, such as inclusion of a small GP population, as well as self-selection bias in the studies on preclinical medical students, medical interns and GPs. Finally, interpretation of the results of this thesis was impeded because the research has been conducted in one university, because cause and effect of results could not always be disentangled and because of low statistical power. Because having mental health problems may influence GPs’ clinical decision-making, one could explore how (future) doctors work, study and relax. Therefore, it is recommended to strive for educating balanced doctors: persons who, in collaboration with their colleagues, are – through reflection – aware of their needs and wants between professional boundaries. Show less
BackgroundSince 2007 all pregnant women in the Netherlands are offered the second-trimester anomaly scan (SAS) in a nationwide prenatal screening program. This study aims to assess the level of... Show moreBackgroundSince 2007 all pregnant women in the Netherlands are offered the second-trimester anomaly scan (SAS) in a nationwide prenatal screening program. This study aims to assess the level of informed choice of women opting for the SAS and to evaluate the presence of routinization 16 years after its implementation. It further explores decisional conflict and women’s decision making.MethodsThis prospective national survey study consisted of an online questionnaire which was completed after prenatal counseling and before undergoing the SAS. Informed choice was measured by the adapted multidimensional measure of informed choice (MMIC) and was defined in case women were classified as value-consistent, if their decision for the SAS was deliberated and made with sufficient knowledge.ResultsA total of 894/1167 (76.6%) women completed the questionnaire. Overall, 54.8% made an informed choice, 89.6% had good knowledge, 59.8% had deliberated their choice and 92.7% held a positive attitude towards the SAS. Women with low educational attainment (p=0.004) or respondents of non-Western descent (p=0.038) were less likely to make an informed choice. Decisional conflict was low, with a significantly lower decisional conflict score in women that made an informed choice (p<0.001). Most respondents (97.9%) did not perceive pressure to undergo the SAS.ConclusionsOur study showed a relatively low rate of informed choice for the SAS, due to absence of deliberation. Therefore, some routinization seem to be present in the Netherlands. However, most women had sufficient knowledge, did not perceive pressure and experienced low decisional conflict. Show less
Seghers, P.A.L.; Alibhai, S.M.H.; Battisti, N.M.L.; Kanesvaran, R.; Extermann, M.; O'Donovan, A.; ... ; O'Hanlon, S. 2023
Most cancers occur in older people and the burden in this age group is increasing. Over the past two decades the evidence on how best to treat this population has increased rapidly. However,... Show moreMost cancers occur in older people and the burden in this age group is increasing. Over the past two decades the evidence on how best to treat this population has increased rapidly. However, implementation of new best practices has been slow and needs involvement of policymakers. This perspective paper explains why older people with cancer have different needs than the wider population. An overview is given of the recommended approach for older people with cancer and its benefits on clinical outcomes and cost-effectiveness. In older patients, the geriatric assessment (GA) is the gold standard to measure level of fitness and to determine treatment tolerability. The GA, with multiple domains of physical health, functional status, psychological health and socio-environmental factors, prevents initiation of inappropriate oncologic treatment and recommends geriatric interventions to optimize the patient's general health and thus resilience for receiving treatments. Multiple studies have proven its benefits such as reduced toxicity, better quality of life, better patient-centred communication and lower healthcare use. Although GA might require investment of time and resources, this is relatively small compared to the improved outcomes, possible cost-savings and compared to the large cost of oncologic treatments as a whole. Show less
The societal toll and human misery associated with mental health disorders is well established. Nonetheless, only about one in five minors with mental health difficulties access adequate... Show moreThe societal toll and human misery associated with mental health disorders is well established. Nonetheless, only about one in five minors with mental health difficulties access adequate professional support. Care pathways and procedures have to facilitate timely recognition and adequate evaluation of patients’ needs to navigate those who can benefit towards ‘the right service in the right place, at the right time, and delivered by the right person’ - a meaningful Chinese proverb often used by authors from the field of healthcare. To reach this meaningful goal, professionals should be able to ‘look’ at a patient and ‘see’ patients’ needs. This by relying on their sufficient knowledge to recognize a probable mental health need, their skills and experience to enquire further, known methods to reliably assess strengths and weaknesses, and readily available resources to translate what they see into an adequate support or management plan. In this PhD thesis we present a series of studies aimed to fill gaps in empirical knowledge on this topic of recognition, assessment, and referral of youth with mental health problems at the interface of primary care and mental healthcare. The results of the studies could inform clinicians on the status quo considering recognition and referral of minors with mental health problems. Moreover, the findings could serve policy and curriculum makers, thereby improving effective practices in child and adolescent mental healthcare. Show less
Heuvel, L. van den; Hoefsloot, W.; Post, B.; Meinders, M.J.; Bloem, B.R.; Stiggelbout, A.M.; Til, J.A. van 2022
Background: In Parkinson's disease (PD), several disease-modifying treatments are being tested in (pre-)clinical trials. To successfully implement such treatments, it is important to have insight... Show moreBackground: In Parkinson's disease (PD), several disease-modifying treatments are being tested in (pre-)clinical trials. To successfully implement such treatments, it is important to have insight into factors influencing the professionals' decision to start disease-modifying treatments in persons who are in the prodromal stage of PD.Objective: We aim to identify factors that professionals deem important in deciding to a start disease-modifying treatment in the prodromal stage of PD.Methods: We used a discrete choice experiment (DCE) to elicit preferences of neurologists and last-year neurology residents regarding treatment in the prodromal phase of PD. The DCE contained 16 hypothetical choice sets in which participants were asked to choose between two treatment options. The presented attributes included treatment effect, risk of severe side-effects, risk of mild side-effects, route of administration, and annual costs.Results: We included 64 neurologists and 18 last year neurology residents. Participants attached most importance to treatment effect and to the risk of severe side-effects. Participants indicated that they would discuss one of the presented treatments in daily practice more often in persons with a high risk of being in the prodromal phase compared to those with a moderate risk. Other important factors for deciding to start treatment included the amount of evidence supporting the putative treatment effect, the preferences of the person in the prodromal phase, and the life expectancy.Conclusion: This study provides important insights in factors that influence decision making by professionals about starting treatment in the prodromal phase of PD. Show less
Objective: To study the experiences, considerations, and motivations of patients with endometriosis in the decision-making process for deep endometriosis (DE) treatment options.Design: Qualitative... Show moreObjective: To study the experiences, considerations, and motivations of patients with endometriosis in the decision-making process for deep endometriosis (DE) treatment options.Design: Qualitative study using semi-structured in-depth focus group methodology.Setting: University medical center.Patient(s): A total of 19 Dutch women diagnosed with DE between 27 and 47 years of age.Intervention(s): Not applicable.Main Outcome Measure(s): Focus group topics were disease impact and motives for treatment, expectations of the treatment process, and important factors in the decision process.Result(s): Women reported that pain, fertility, and strong fear of complications are important decisive factors in the treatment process. The goal of conceiving a child is considered important, however, sometimes doctors emphasize this topic too much. It emerged that complication counseling is frequently about surgical complications, whereas side effects of hormonal treatments are neglected. Shared decisionmaking and information about treatment options, complications, and side effects are not always optimal, making it difficult to make a well-considered choice. Despitenegative experiences encountered after surgery, the positive effect of surgery ensures that mostwomendonot regret their choice.Conclusion(s): In the treatment decision process for patients with DE, pain is almost always the most important decisive factor. The wish to conceive and strong fear of complications can change this choice. Doctors should understand the importance of fertility for the majority of women, but, also, if this is not considered paramount, respect that view. To improve shared decision making, exploration of treatment goals, training of healthcare providers, and better patient information provision are desirable. (C) 2020 by American Society for Reproductive Medicine. Show less
Voorend, C.G.N.; Berkhout-Byrne, N.C.; Meuleman, Y.; Mooijaart, S.P.; Bos, W.J.W.; Buren, M. van 2021
Background Older patients with end-stage kidney disease (ESKD) often live with unidentified frailty and multimorbidity. Despite guideline recommendations, geriatric assessment is not part of... Show moreBackground Older patients with end-stage kidney disease (ESKD) often live with unidentified frailty and multimorbidity. Despite guideline recommendations, geriatric assessment is not part of standard clinical care, resulting in a missed opportunity to enhance (clinical) outcomes including quality of life in these patients. To develop routine geriatric assessment programs for patients approaching ESKD, it is crucial to understand patients' and professionals' experiences with and perspectives about the benefits, facilitators and barriers for geriatric assessment.MethodsIn this qualitative study, semi-structured focus group discussions were conducted with ESKD patients, caregivers and professionals. Participants were purposively sampled from three Dutch hospital-based study- and routine care initiatives involving geriatric assessment for (pre-)ESKD care. Transcripts were analysed inductively using thematic analysis.ResultsIn six focus-groups, participants (n=47) demonstrated four major themes: (1) Perceived characteristics of the older (pre)ESKD patient group. Patients and professionals recognized increased vulnerability and (cognitive) comorbidity, which is often unrelated to calendar age. Both believed that often patients are in need of additional support in various geriatric domains. (2) Experiences with geriatric assessment. Patients regarded the content and the time spent on the geriatric assessment predominantly positive. Professionals emphasized that assessment creates awareness among the whole treatment team for cognitive and social problems, shifting the focus from mainly somatic to multidimensional problems. Outcomes of geriatric assessment were observed to enhance a dialogue on suitability of treatment options, (re)adjust treatment and provide/seek additional (social) support. (3) Barriers and facilitators for implementation of geriatric assessment in routine care. Discussed barriers included lack of communication about goals and interpretation of geriatric assessment, burden for patients, illiteracy, and organizational aspects. Major facilitators are good multidisciplinary cooperation, involvement of geriatrics and multidisciplinary team meetings. (4) Desired characteristics of a suitable geriatric assessment concerned the scope and use of tests and timing of assessment.ConclusionsPatients and professionals were positive about using geriatric assessment in routine nephrology care. Implementation seems achievable, once barriers are overcome and facilitators are endorsed. Geriatric assessment in routine care appears promising to improve (clinical) outcomes in patients approaching ESKD. Show less
Popat, S.; Navani, N.; Kerr, K.M.; Smit, E.F.; Batchelor, T.J.P.; Schil, P. van; ... ; McDonald, F. 2020
Non-small cell lung cancer (NSCLC) accounts for approximately one in five cancer-related deaths, and management requires increasingly complex decision making by health care professionals. Many... Show moreNon-small cell lung cancer (NSCLC) accounts for approximately one in five cancer-related deaths, and management requires increasingly complex decision making by health care professionals. Many centers have therefore adopted a multidisciplinary approach to patient care, using the expertise of various specialists to provide the best evidence-based, personalized treatment. However, increasingly complex disease staging, as well as expanded biomarker testing and multimodality management algorithms with novel therapeutics, have driven the need for multifaceted, collaborative decision making to optimally guide the overall treatment process. To keep up with the rapidly evolving treatment landscape, national-level guidelines have been introduced to standardize patient pathways and ensure prompt diagnosis and treatment. Such strategies depend on efficient and effective communication between relevant multidisciplinary team members and have both improved adherence to treatment guidelines and extended patient survival. This article highlights the value of a multidisciplinary approach to diagnosis and staging, treatment decision making, and adverse event management in NSCLC.Implications for Practice This review highlights the value of a multidisciplinary approach to the diagnosis and staging of non-small cell lung cancer (NSCLC) and makes practical suggestions as to how multidisciplinary teams (MDTs) can be best deployed at individual stages of the disease to improve patient outcomes and effectively manage common adverse events. The authors discuss how a collaborative approach, appropriately leveraging the diverse expertise of NSCLC MDT members (including specialist radiation and medical oncologists, chest physicians, pathologists, pulmonologists, surgeons, and nursing staff) can continue to ensure optimal per-patient decision making as treatment options become ever more specialized in the era of biomarker-driven therapeutic strategies. Show less
Background Molecular tumor boards (MTBs) provide rational, genomics-driven, patient-tailored treatment recommendations. Worldwide, MTBs differ in terms of scope, composition, methods, and... Show moreBackground Molecular tumor boards (MTBs) provide rational, genomics-driven, patient-tailored treatment recommendations. Worldwide, MTBs differ in terms of scope, composition, methods, and recommendations. This study aimed to assess differences in methods and agreement in treatment recommendations among MTBs from tertiary cancer referral centers in The Netherlands.Materials and Methods MTBs from all tertiary cancer referral centers in The Netherlands were invited to participate. A survey assessing scope, value, logistics, composition, decision-making method, reporting, and registration of the MTBs was completed through on-site interviews with members from each MTB. Targeted therapy recommendations were compared using 10 anonymized cases. Participating MTBs were asked to provide a treatment recommendation in accordance with their own methods. Agreement was based on which molecular alteration(s) was considered actionable with the next line of targeted therapy.Results Interviews with 24 members of eight MTBs revealed that all participating MTBs focused on rare or complex mutational cancer profiles, operated independently of cancer type-specific multidisciplinary teams, and consisted of at least (thoracic and/or medical) oncologists, pathologists, and clinical scientists in molecular pathology. Differences were the types of cancer discussed and the methods used to achieve a recommendation. Nevertheless, agreement among MTB recommendations, based on identified actionable molecular alteration(s), was high for the 10 evaluated cases (86%).Conclusion MTBs associated with tertiary cancer referral centers in The Netherlands are similar in setup and reach a high agreement in recommendations for rare or complex mutational cancer profiles. We propose a "Dutch MTB model" for an optimal, collaborative, and nationally aligned MTB workflow.Implications for Practice Interpretation of genomic analyses for optimal choice of target therapy for patients with cancer is becoming increasingly complex. A molecular tumor board (MTB) supports oncologists in rationalizing therapy options. However, there is no consensus on the most optimal setup for an MTB, which can affect the quality of recommendations. This study reveals that the eight MTBs associated with tertiary cancer referral centers in The Netherlands are similar in setup and reach a high agreement in recommendations for rare or complex mutational profiles. The Dutch MTB model is based on a collaborative and nationally aligned workflow with interinstitutional collaboration and data sharing. Show less
Both prosociality in group context and morality are important aspects of social life and living together with others in society. In both situations, understanding the cognitive processes underlying... Show moreBoth prosociality in group context and morality are important aspects of social life and living together with others in society. In both situations, understanding the cognitive processes underlying the decisions is argued to be a crucial step in designing evidence-based interventions addressing not only choice outcomes, but the driving forces of the choices as well. Using fine-grained and unobtrusive measure of cognitive processes in the decision process, eye tracking is applied in the investigation of cognitive processes in this dissertation. Chapter 2 investigated active ignorance to others’ group membership. Chapter 3 presented two eye tracking studies, in which the cognitive processes of prosociality in intergroup contexts were investigated. Chapter 4 reported a study investigating the cognitive processes underlying moral decisions, speaking to the theoretical debate in moral decision making, advocating a choice discriminability perspective over the dual process theory of moral judgment. The work demonstrates the merit of further illuminating the inner workings of the “black box” of decision making, by using process-tracking techniques to gain insights about decision processes that would have been difficult to achieve when only using choices. Moreover, the work presented here makes a methodological contribution by developing a standardizable and incentivized moral dilemma task Show less
What influences decision-makers to attack another country when on the brink of war? The main aim of this study is to detect a causal mechanism underlying the decision to attack another country when... Show moreWhat influences decision-makers to attack another country when on the brink of war? The main aim of this study is to detect a causal mechanism underlying the decision to attack another country when on the brink of war, and whether or not this mechanism differs between regime-types. It investigates whether or not regime-type, the nature of the conflict, the power used, and hawkish beliefs of decision-makers matter in this decision. By addressing this question from a political psychological and comparative perspective, this dissertation tests the microfoundations of democratic peace theory simultaneously with alternative theories of decision-making during conflict resolution.The core analytical instrument is a decision-making experiment, executed in the US, Russia, and China. The experimental results are triangulated with a large N-study, and a case study. The overall results show that although the democratic peace as an empirical regularity might still be valid, the theoretical arguments to explain why democracies do not fight with each other turn out to be built on empirically unsupported foundations. This study argues that an actor-based approach towards decision-making processes within international relations offers important insights to the more structured-based theories of international relations. It thereby convincingly shows that the individual matters, also in IR. Show less
This study examines the kind of uncertainties frontline tax officials working with a trust based inspection approach experience in interacting with citizen-clients. The classical literature on... Show moreThis study examines the kind of uncertainties frontline tax officials working with a trust based inspection approach experience in interacting with citizen-clients. The classical literature on bureaucracy and the street-level bureaucracy literature suggest frontline officials face two kinds of uncertainties: information and interpretation problems. Analysing stories of Dutch frontline tax officials collected through in-depth interviews, this article shows that these two kinds of uncertainty only explain a part of the uncertainties experienced. Respondents also face action problems requiring improvisational judgements. The study furthermore finds that different sources underlie these uncertainties, pointing to possible explanations. Show less
This contribution investigates the impact of the Eastern enlargement on the decision-making capacity of the European Union. On the basis of new data on the number and types of legal acts produced... Show moreThis contribution investigates the impact of the Eastern enlargement on the decision-making capacity of the European Union. On the basis of new data on the number and types of legal acts produced by the EU (1994–2014) and on the time between the proposal and adoption of legislative acts (1994– 2012), the contribution argues that enlargement has had a rather limited impact on legislative production and duration and that it is extremely hard to disentangle this impact from other contemporaneous institutional and socioeconomic developments. On the basis of analyses of expert-based policy positions of member states in EU negotiations and on voting data from the Council of Ministers of the EU, it is argued that enlargement has possibly added a new dimension of contestation in EU legislative decision-making, but one that concerns a relatively small share of all negotiations in few policy fields like environment. All in all, there is no evidence that the Eastern enlargement has led to the institutional gridlock and loss of decision-making capacity that the public, many politicians and some academics as well have feared. Show less
Kleijwegt, M.C.; Mey, A.G.L. van der; Wiggers-deBruine, F.T.; Malessy, M.J.A.; Osch, M.J.P. van 2016
This thesis presents a series of translational research studies to explore topics of importance to a patient stakeholder community--Duchenne and Becker muscular dystrophy. The overarching objective... Show moreThis thesis presents a series of translational research studies to explore topics of importance to a patient stakeholder community--Duchenne and Becker muscular dystrophy. The overarching objective was to inform a patient/family foundation's interventions and policy and advocacy approaches. Results from a longitudinal study on mothers__ wellbeing support the need for systematic exploration of caregivers__ unmet support needs, especially those related to coping with DMD-related uncertainty and fear. Efforts to improve mothers__ adaptation should focus on fostering resilience and enhancing benefit finding. A study on treatment preferences and disease impact that used Best-Worst Scaling found that caregivers were willing to accept a serious or fatal risk when balanced with a non-curative treatment, even absent lifespan improvement. Parents__ most pressing worries were about symptom progression and access to medical care. The final qualitative studies highlight the complexity of clinical trial decision making, especially for rare, progressive pediatric disorders, where participants equated doing __nothing__ with doing harm. Parents developed intentions to participate in trials before the informed consent process. Parents__ decisions were strongly influenced by the anticipation of individual benefit. The adaptive optimism engendered by the availability of trial was highly valued by both parents and clinicians on trial teams. Show less
Muth, C.; Akker, M. van den; Blom, J.W.; Mallen, C.D.; Rochon, J.; Schellevis, F.G.; ... ; Glasziou, P.P. 2014
In the Netherlands, information provision about fertility preservation (FP) for young women with breast cancer is not sufficient. Since an increasing number of Dutch breast cancer patients will... Show moreIn the Netherlands, information provision about fertility preservation (FP) for young women with breast cancer is not sufficient. Since an increasing number of Dutch breast cancer patients will face this preference-sensitive decision each year, there is a clear need for improvement of information provision about FP. The overall aim of this thesis was therefore to (a) develop and (b) evaluate a Decision Aid (DA) about FP that is targeted to improve information provision and decision making about FP for young women with breast cancer. This thesis describes consecutively the development and evaluation of such a DA with values clarification exercise (VCE) Show less
