Globally, over 537 million adults are living with diabetes mellitus. Treatment of diabetes poses a large burden on patients, since it relies predominantly on the patient’s daily self-management.... Show moreGlobally, over 537 million adults are living with diabetes mellitus. Treatment of diabetes poses a large burden on patients, since it relies predominantly on the patient’s daily self-management. Therefore, providing the patient with a care plan that fits seamlessly in one’s daily routines, is in line with their values and preferences and does not overburden their capacities, is of major importance. In order to make diabetes care fit, clinicians and patients need to collaborate and share their knowledge and experience. One possible approach to this collaboration is shared decision making (SDM). In SDM, patients and clinicians partner up and work together to decide on the best available healthcare strategy for the individual patient, taking into account both the best available evidence, and the patient’s preferences, needs and context. This thesis aimed to explore patient and clinician efforts towards making diabetes care fit. In this exploration we aimed to provide insight in the factors driving the decision making process, discuss various strategies to tailor SDM to the patient’s situation, needs and preferences, and explore ways to support the patient and the patient-clinician partnership in diabetes care. Show less
Akkermans, A.; Prins, S.; Spijkers, A.S.; Wagemans, J.; Labrie, N.H.M.; Willems, D.L.; ... ; Vos, M.A. de 2023
PurposeIn intensive care units (ICUs), decisions about the continuation or discontinuation of life-sustaining treatment (LST) are made on a daily basis. Professional guidelines recommend an open... Show morePurposeIn intensive care units (ICUs), decisions about the continuation or discontinuation of life-sustaining treatment (LST) are made on a daily basis. Professional guidelines recommend an open exchange of standpoints and underlying arguments between doctors and families to arrive at the most appropriate decision. Yet, it is still largely unknown how doctors and families argue in real-life conversations. This study aimed to (1) identify which arguments doctors and families use in support of standpoints to continue or discontinue LST, (2) investigate how doctors and families structure their arguments, and (3) explore how their argumentative practices unfold during conversations.MethodA qualitative inductive thematic analysis of 101 audio-recorded conversations between doctors and families.ResultsSeventy-one doctors and the families of 36 patients from the neonatal, pediatric, and adult ICU (respectively, N-ICU, P-ICU, and A-ICU) of a large university-based hospital participated. In almost all conversations, doctors were the first to argue and families followed, thereby either countering the doctor's line of argumentation or substantiating it. Arguments put forward by doctors and families fell under one of ten main types. The types of arguments presented by families largely overlapped with those presented by doctors. A real exchange of arguments occurred in a minority of conversations and was generally quite brief in the sense that not all possible arguments were presented and then discussed together.ConclusionThis study offers a detailed insight in the argumentation practices of doctors and families, which can help doctors to have a sharper eye for the arguments put forward by doctors and families and to offer room for true deliberation. Show less
During the COVID-19 lockdown courts tried urgent criminal cases by using videoconferencing technology. Communicating via a screen affects what one can see, hear or feel. This article presents the... Show moreDuring the COVID-19 lockdown courts tried urgent criminal cases by using videoconferencing technology. Communicating via a screen affects what one can see, hear or feel. This article presents the findings of three different studies on the experiences with videoconferencing during the lockdown. A survey among lawyers, a survey among detainees and a Twitter search all indicate that the defendant’s right to effective participation was undermined: connectivity problems harmed the right to attend court and confidential communication between the defendant and his lawyer was impossible.Tijdens de COVID-19-lockdown behandelden rechtbanken urgente strafzaken met behulp van videoverbindingen. Communiceren via een beeldscherm heeft invloed op wat men kan zien, horen of voelen. Dit artikel presenteert de bevindingen van drie verschillende onderzoeken naar de ervaringen met videorechtspraak tijdens de lockdown. Een survey onder advocaten, een survey onder gedetineerden en een zoekactie op Twitter wijzen er allemaal op dat het recht van de verdachte op effectieve participatie werd ondermijnd: verbindingsproblemen hebben het aanwezigheidsrecht onder druk gezet en vertrouwelijke communicatie tussen de verdachte en zijn advocaat was onmogelijk.Show less
Bulk, S. van den; Spoelman, W.A.; Dijkman, P.R.M. van; Numans, M.E.; Bonten, T.N.; Leiden Univ Med Ctr LUMC 2022
Background: The prevalence of coronary artery disease is increasing due to the aging population and increasing prevalence of cardiovascular risk factors. Non-acute chest pain often is the first... Show moreBackground: The prevalence of coronary artery disease is increasing due to the aging population and increasing prevalence of cardiovascular risk factors. Non-acute chest pain often is the first symptom of stable coronary artery disease. To optimise care for patients with non-acute chest pain and make efficient use of available resources, we need to know more about the current incidence, referral rate and management of these patients. Methods: We used routinely collected health data from the STIZON data warehouse in the Netherlands between 2010 and 2016. Patients > 18 years, with no history of cardiovascular disease, seen by the general practitioner (GP) for non-acute chest pain with a suspected cardiac origin were included. Outcomes were (i) incidence of new non-acute chest pain in primary care, (ii) referral rates to the cardiologist, (iii) correspondence from the cardiologist to the GP, (iv) registration by GPs of received correspondence and; (v) pharmacological guideline adherence after newly diagnosed stable angina pectoris. Results: In total 9029 patients were included during the study period, resulting in an incidence of new non-acute chest pain of 1.01/1000 patient-years. 2166 (24%) patients were referred to the cardiologist. In 857/2114 (41%) referred patients, correspondence from the cardiologist was not available in the GP's electronic medical record. In 753/1257 (60%) patients with available correspondence, the GP did not code the conclusion in the electronic medical record. Despite guideline recommendations, 37/255 (15%) patients with angina pectoris were not prescribed antiplatelet therapy nor anticoagulation, 69/255 (27%) no statin and 67/255 (26%) no beta-blocker. Conclusion: After referral, both communication from cardiologists and registration of the final diagnosis by GPs were suboptimal. Both cardiologists and GPs should make adequate communication and registration a priority, as it improves health outcomes. Secondary pharmacological prevention in patients with angina pectoris was below guideline standards. So, proactive attention needs to be given to optimise secondary prevention in this high-risk group in primary care. Show less
Struiksma, M.E.; De Mulder, H.N.M.; Van Berkum, J.J.A. 2022
Verbal insults go against a universal moral imperative not to inflict harm on others, and they also pose a threat to one’s face or reputation. As such, these “verbal slaps in the face” provide a... Show moreVerbal insults go against a universal moral imperative not to inflict harm on others, and they also pose a threat to one’s face or reputation. As such, these “verbal slaps in the face” provide a unique opportunity to explore the interface between language and emotion. We used electroencephalography (EEG) and skin conductance (SC) recordings to compare the short-term impact of verbal insults such as “Linda is an idiot” or “Paula is horrible” to that of more positive evaluations (e.g., “Linda is an angel”, “Paula is impressive”) and neutral factual descriptions (e.g., “Linda is a student”), examining how responses to these various speech acts adapt as a function of massive repetition. By using either the participant’s or somebody else’s name, we also explored how statement impact depended on who was being evaluated. Multilevel ERP analysis with three predesignated latency ranges revealed an early insult effect in P2 amplitude that was highly robust over repetition and also did not depend on who the insult was about. This P2 effect points to a very rapid and stable capture of emotional attention, plausibly triggered by the retrieval of evaluative word meaning from long-term memory. Insults also elicited a larger late positive potential (LPP), again regardless of who the insult was about, but this later effect did not withstand repetition. Skin conductance responses showed that insults did not lead to more arousal than compliments did. In all, our findings suggest that in a standard psycholinguistic comprehension experiment without real interaction between speakers, insults deliver lexical “mini-slaps in the face,” such that the strongly negative evaluative words involved (e.g., “idiot”) automatically grab attention during lexical retrieval, regardless of how often that retrieval occurs. Show less
Kunneman, M.; Hargraves, I.G.; Sivly, A.L.; Branda, M.E.; LaVecchia, C.M.; Labrie, N.H.M.; ... ; Montori, V. 2022
Objective: To evaluate how the use of a within-encounter SDM tool (compared to usual care in a randomized trial) contributes to care plans that make sense to patients with atrial fibrillation... Show moreObjective: To evaluate how the use of a within-encounter SDM tool (compared to usual care in a randomized trial) contributes to care plans that make sense to patients with atrial fibrillation considering anticoagulation. Methods: In a planned subgroup of the trial, 123 patients rated post-encounter how much sense their decided-upon care plan made to them and explained why. We explored how sense ratings related to observed patient involvement (OPTION12), patient's decisional conflict, and adherence to their plan based on pharmacy records. We analyzed patient motives using Burke's pentad. Results: Plan sensibility was similarly high in both arms (Usual care n = 62: mean 9.4/10 (SD 1.0) vs SDM tool n = 61: 9.2/10 (SD 1.5); p = .8), significantly and weakly correlated to decisional conflict (rho = -0.28, p = .002), but not to OPTION12 or adherence. Plans made sense to most patients given their known efficacy, safety and what is involved in implementing them. Conclusion: Adding an effective intervention to promote SDM did not affect how much, or why, care plans made sense to patients receiving usual care, nor patient adherence to them. Practice Implications: Evaluating the extent to which care plans make sense can improve SDM assessments, particularly when SDM extends beyond selecting from a menu of options. Show less
Bredart, A.; Pauw, A. de; Anota, A.; Tuchler, A.; Dick, J.; Muller, A.; ... ; Dolbeault, S. 2021
Objectives: Comprehensive breast cancer (BC) risk models integrating effects of genetic (GRF) and non-genetic risk factors (NGRF) may refine BC prevention recommendations. We explored the perceived... Show moreObjectives: Comprehensive breast cancer (BC) risk models integrating effects of genetic (GRF) and non-genetic risk factors (NGRF) may refine BC prevention recommendations. We explored the perceived information received on BC risk factors, and related characteristics, in female relatives of women with a BRCA1/2 or PALB2 pathogenic variant, undergoing BC risk assessment using the CanRisk(C) prediction tool.Methods: Of 200 consecutive cancer-free women approached after the initial genetic consultation, 161 (80.5%) filled in questionnaires on their perception of information received and wished further information on BC risk factors (e.g., being a carrier of a moderate risk altered gene, personal genetic profile, lifestyles). Multilevel multivariate linear models were performed accounting for the clinician who met the counselee and exploring the effect of counselees' socio-demographic, familial and psychological characteristics on the perceived extent of information received.Results: Perceived no/little information received and wish for further information were more frequent for NGRF (>50%) than for GRF, especially high-risk genes (<20%). Perceived amount of information received and desire for further information were inversely correlated (p=<0.0001). Higher education level related to lower perceived levels of information received on GRF. Younger counselees' age (beta = 0.13, p = 0.02) and less frequent engagement coping (e.g., inclination to solicit information) (beta = 0.24, p = 0.02) related to lower perceived information received about NGRF. Other assessed counselees' features were not found to be associated to GRF and NGRF information perception.Conclusions: Awareness of counselees' perceived lack of information on BC risk factors indicates a need to enhance evidence-based information on BC NGRF especially. (C) 2021 The Authors. Published by Elsevier Ltd. Show less
Westendorp, J.; Evers, A.W. M.; Stouthard, J.M.L.; Budding, J.; Wall, E.; Plum, N.M.F.; ... ; Vliet, L.M. van 2021
BackgroundMany complaints in medicine and in advanced illnesses are about communication. Little is known about which specific communications harm. This study explored the perspectives of patients... Show moreBackgroundMany complaints in medicine and in advanced illnesses are about communication. Little is known about which specific communications harm. This study explored the perspectives of patients with advanced cancer about potentially harmful communication behaviors by oncologists and helpful alternatives.MethodsAn online survey design was used that was based on literature scoping and patient/clinician/researcher input. Patients with advanced cancer (n = 74) reflected on the potential harmfulness of 19 communication situations. They were asked whether they perceived the situation as one in which communication could be harmful (yes/no). If they answered “yes,” they were asked whether they perceived the examples as harmful (yes/no) or helpful (yes/no) and to provide open comments. Results were analyzed quantitatively and qualitatively (content analysis).ResultsCommunication regarding information provision, prognosis discussion, decision-making, and empathy could be unnecessarily potentially harmful, and this occurred in various ways, such as making vague promises instead of concrete ones (92%), being too directive in decision-making (qualitative), and not listening to the patient (88%). Not all patients considered other situations potentially harmful (eg, introducing the option of refraining from anticancer therapy [49%] and giving too much [prognostic] information [60%]). Exploring each individual patients' needs/preferences seemed to be a precondition for helpful communication.ConclusionsThis article provides patient perspectives on oncologists' unnecessarily potentially harmful communication behaviors and offers practical tools to improve communication in advanced cancer care. Both preventable pitfalls and delicate challenges requiring an individualized approach, where exploration might help, are described. Although providing difficult and unwelcome news is a core task for clinicians, this study might help them to do so while preventing potentially unnecessary harm. Show less
Miranda, R.; Smets, T.; Noortgate, N. van den; Steen, J.T. van der; Deliens, L.; Payne, S.; ... ; PACE Collaborators 2021
Background: 'PACE Steps to Success' is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve... Show moreBackground: 'PACE Steps to Success' is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents' comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia.Methods: Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous 4 months. The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments. Using after-death questionnaires, staff assessed comfort in the last week of life (Comfort Assessment in Dying-End-of-Life in Dementia-scale; primary outcome) and quality of care and dying in the last month of life (Quality of Dying in Long-Term Care scale; secondary outcome).Results: At baseline, we included 177 residents with advanced dementia, 126 with non-advanced dementia and 156 without dementia. Post-intervention, respectively in the control and the intervention group, we included 136 and 104 residents with advanced dementia, 167 and 110 with non-advanced dementia and 157 and 137 without dementia. We found no subgroup differences on comfort in the last week of life, comparing advanced versus without dementia (baseline-adjusted mean sub-group difference 2.1; p-value = 0.177), non-advanced versus without dementia (2.7; p = 0.092), and advanced versus non-advanced dementia (- 0.6; p = 0.698); or on quality of care and dying in the last month of life, comparing advanced and without dementia (- 0.6; p = 0.741), non-advanced and without dementia (- 1.5; p = 0.428), and advanced and non-advanced dementia (0.9; p = 0.632).Conclusions: The lack of subgroup difference suggests that while the program did not improve comfort in dying residents with or without dementia, it appeared to equally improve quality of care and dying in the last month of life for residents with dementia (regardless of the stage) and those without dementia. A generalist and non-disease-specific palliative care program, such as PACE Steps to Success, is a useful starting point for future palliative care improvement in nursing homes, but to effectively improve residents' comfort, this program needs further development. Show less
Sexuality is a significant quality-of-life concern for many cancer patients. Patients may be disadvantaged if they are not informed and not offered sexual health care. We sought to reveal... Show moreSexuality is a significant quality-of-life concern for many cancer patients. Patients may be disadvantaged if they are not informed and not offered sexual health care. We sought to reveal oncologists' current practice and opinions concerning sexual counselling. The aim of this study was to explore the knowledge, attitude and practice patterns of Dutch medical oncologists regarding treatment-related sexual dysfunction. Questionnaires were sent to 433 members of the Dutch Society of Medical Oncology. The majority (81.5%) of the 120 responding medical oncologists (response rate 30.6%) stated they discussed sexual function with fewer than half of their patients. At the same time, 75.8% of the participating oncologists agreed that addressing sexual function is their responsibility. Sexual function was discussed more often with younger patients and patients with a curative treatment intent. Barriers for avoiding discussing sexual function were lack of time (56.1%), training (49.5%) and advanced age of the patient (50.4%). More than half (64.6%) stated they had little knowledge about the subject and the majority (72.9%) wanted to acquire additional training in sexual function counselling. Medical oncologists accept that sexual function counselling falls within their profession, yet they admit to not counselling patients routinely concerning sexual function. Only in a minority of cases do medical oncologists inform their patients about sexual side effects of treatment. Whether they counsel patients is related to how they view patient's prognosis, patient's age, and self-reported knowledge. Findings indicate there is a role for developing education and practical training. Show less
Shackley, S.; Jack, C.; Broecks, K.; Mors, E. ter 2020
Introduction The needs of cancer patients and survivors regarding discussing sexuality are frequently unmet, with many not receiving adequate information. To optimize information about sexuality... Show moreIntroduction The needs of cancer patients and survivors regarding discussing sexuality are frequently unmet, with many not receiving adequate information. To optimize information about sexuality and cancer, patients' perspective is needed. The goals of this study were to investigate what kind of information Dutch cancer patients need, their ideas on how to improve communication, and to identify patients who are more in need of information regarding sexuality. Methods The Dutch Federation of Cancer Patient Organizations developed and conducted a nationwide 28-item online survey. The survey was distributed among cancer patients and survivors. Results In total, 2657 (ex) cancer patients participated, with a median age of 61 years, and half were male (45.2%). Of the respondents, 65% were in need of information about sexuality. Patients <= 61 years (p < 0.001), patients with a self-reported negative effect of cancer on sexuality (p < 0.001) and patients who were diagnosed less than 2 years ago (p < 0.04) reported a higher need for information. Regardless of type of cancer, patients were most in need of practical tips and practical information regarding sexuality. To enhance communication about sexuality, 64% of the respondents suggested that it would be of help if care providers give information as standard care. Conclusions (Ex) cancer patient prefer to receive standard information about sexuality by their care providers. According to patients' preferences, information must include practical tips. Age, self-reported negative effect on sexuality status and time from diagnoses influenced the need for information. Show less
Résumé de la thèse Cette thèse porte sur le rapport entre communication, pouvoir et violence au Tchad depuis la pénétration coloniale jusqu’à la période postindépendance. Les régions du Moyen... Show moreRésumé de la thèse Cette thèse porte sur le rapport entre communication, pouvoir et violence au Tchad depuis la pénétration coloniale jusqu’à la période postindépendance. Les régions du Moyen-Chari et du Guéra illustrent cette problématique structurant l’interaction communication, pouvoir et violence au Tchad. Ce territoire connut des violences multiformes liées à la mise en place et à l’usage des systèmes de communication. Pendant la colonisation, l’instauration de l’autorité coloniale sur ce vaste territoire avait nécessité la création des voies de communication dont les réalisations ont été dramatiques pour les populations paysannes. Celles-ci étaient astreintes aux corvées de portage des matériels militaires et des travaux forcés. Pendant, les guerres civiles postindépendances, les systèmes de communication ont été intégrés dans les stratégies de violences. Les routes et les divers moyens de l’information et de transport constituent des enjeux stratégiques pour lesquels les forces militaires en guerre projettent la violence sur les populations rurales. Les nouvelles technologies de l’information et de communication révolutionnent l’organisation des forces rebelles et les stratégies de guerre au Tchad sans exclure les violences sur les populations. Cependant, les guerres civiles successives ont gravement impacté sur la conduite de l’appareil étatique tchadien. Show less
PurposeThe original 18-item, four-dimensional Trust in Oncologist Scale assesses cancer patients’ trust in their oncologist. The current aim was to develop and validate a short form version of the... Show morePurposeThe original 18-item, four-dimensional Trust in Oncologist Scale assesses cancer patients’ trust in their oncologist. The current aim was to develop and validate a short form version of the scale to enable more efficient assessment of cancer patients’ trust.MethodsExisting validation data of the full-length Trust in Oncologist Scale were used to create a short form of the Trust in Oncologist Scale. The resulting short form was validated in a new sample of cancer patients (n = 92). Socio-demographics, medical characteristics, trust in the oncologist, satisfaction with communication, trust in healthcare, willingness to recommend the oncologist to others and to contact the oncologist in case of questions were assessed. Internal consistency, reliability, convergent and structural validity were tested.ResultsThe five-item Trust in Oncologist Scale Short Form was created by selecting the statistically best performing item from each dimension of the original scale, to ensure content validity. Mean trust in the oncologist was high in the validation sample (response rate 86%, M = 4.30, SD = 0.98). Exploratory factor analyses supported one-dimensionality of the short form. Internal consistency was high, and temporal stability was moderate. Initial convergent validity was suggested by moderate correlations between trust scores with associated constructs.ConclusionsThe Trust in Oncologist Scale Short Form appears to efficiently, reliably and validly measures cancer patients’ trust in their oncologist. It may be used in research and as a quality indicator in clinical practice. More thorough validation of the scale is recommended to confirm this initial evidence of its validity. Show less
Kunneman- van Unnik, Helena Josefina Antonia Maria 2016
In this thesis, we aimed to gain insight in the process of shared decision making in the setting of adjuvant cancer treatments. We observed clinician-patient consultations in daily clinical... Show moreIn this thesis, we aimed to gain insight in the process of shared decision making in the setting of adjuvant cancer treatments. We observed clinician-patient consultations in daily clinical practice, and developed a core list of information that should be provided in the pre-treatment consultation. We showed that the three key steps of shared decision making are followed to a limited extent. Choice awareness is rarely created in pre-treatment consultations on (neo-)adjuvant cancer treatment, and the option of foregoing these treatments is omitted consistently (Step 1). There is large variation in information provision on possible treatment strategies. Patients tend to overestimate the beneficial effect of treatment, and to underestimate the probability of harms (Step 2). Finally, patients' values and treatment preferences are elicited in only a minority of consultations. If patients voice their values or treatment preferences, or if the oncologist indicates to consider these, patients perceive a significant more active role in the decision making process (Step 3). Our results show that opportunities are missed to engage patients in a process of shared decision making. Small changes in doctor-patient communication can facilitate patients' involvement in deciding about treatment. Show less
Kunneman, M.; Marijnen, C.A.M.; Baas-Thijssen, M.C.M.; Linden, Y.M. van der; Rozema, T.; Muller, K.; ... ; Pieterse, A.H. 2015
