Survival rates in pediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases have improved due to advances in conditioning regimens, donor selection, and prophylaxis and... Show moreSurvival rates in pediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases have improved due to advances in conditioning regimens, donor selection, and prophylaxis and treatment of infections and graft-versus-host disease. Insight into the long-term patient-reported outcomes (PROs) after pediatric HSCT for nonmalignant disease is lacking but essential for optimal shared decision making, counseling, and quality of care. The purpose of this research was to determine long-term patient-reported outcomes in allogeneic pediatric HSCT for nonmalignant diseases and to compare these results with Dutch reference data. This single-center cohort study evaluated PROs (PedsQL 4.0, PROMIS item banks), self- or proxy-reported, among patients at >= 2 years after pediatric allogeneic HSCT for nonmalignant disease. Mean scores were compared with those of the Dutch general population. Of 171 eligible patients, 119 participated, for a 70% response rate. The median patient age was 15.8 years (range, 2 to 49 years), and the median duration of follow-up was 8.7 years (range, 2 to 34 years). Indications for HSCT included inborn errors of immunity (n = 41), hemoglobinopathies (n = 37), and bone marrow failure (n = 41). Compared with reference data, significantly lower scores were found in adolescents (age 13 to 17 years) on the Total, Physical Health, and School Functioning PedsQL subscales. Significantly more Sleep Disturbance was reported in children (age 8 to 18 years). On the other hand, significantly better scores were seen on PROMIS Fatigue (age 5 to 7 years) and Pain Interference (age 8 to 18 years) and, in adults (age 19 to 30 years), on Depressive Symptoms and Sleep Disturbance. This study showed better or comparable very long-term PROs in patients after pediatric HSCT for nonmalignant diseases compared with the reference population. Children and adolescents seem to be the most affected, indicating the need for supportive care to prevent impaired quality of life and, more importantly, to amplify their long-term well-being. (c) 2022 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/) Show less
Engels, N.; Graav, G.N. de; Nat, P. van der; Dorpel, M. van den; Stiggelbout, A.M.; Bos, W.J. 2022
Objectives To provide a comprehensive overview of interventions that support shared decision-making (SDM) for treatment modality decisions in advanced kidney disease (AKD). To provide summarised... Show moreObjectives To provide a comprehensive overview of interventions that support shared decision-making (SDM) for treatment modality decisions in advanced kidney disease (AKD). To provide summarised information on their content, use and reported results. To provide an overview of interventions currently under development or investigation. Design The JBI methodology for scoping reviews was followed. This review conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) checklist. Data sources MEDLINE, Embase, Web of Science, Cochrane Library, Emcare, PsycINFO, PROSPERO and Academic Search Premier for peer-reviewed literature. Other online databases (eg, clinicaltrials.gov, OpenGrey) for grey literature. Eligibility for inclusion Records in English with a study population of patients >18 years of age with an estimated glomerular filtration rate <30 mL/min/1.73 m(2). Records had to be on the subject of SDM, or explicitly mention that the intervention reported on could be used to support SDM for treatment modality decisions in AKD. Data extraction and synthesis Two reviewers independently screened and selected records for data extraction. Interventions were categorised as prognostic tools (PTs), educational programmes (EPs), patient decision aids (PtDAs) or multicomponent initiatives (MIs). Interventions were subsequently categorised based on the decisions they were developed to support. Results One hundred forty-five interventions were identified in a total of 158 included records: 52 PTs, 51 EPs, 29 PtDAs and 13 MIs. Sixteen (n=16, 11%) were novel interventions currently under investigation. Forty-six (n=46, 35.7%) were reported to have been implemented in clinical practice. Sixty-seven (n=67, 51.9%) were evaluated for their effects on outcomes in the intended users. Conclusion There is no conclusive evidence on which intervention is the most efficacious in supporting SDM for treatment modality decisions in AKD. There is a lot of variation in selected outcomes, and the body of evidence is largely based on observational research. In addition, the effects of these interventions on SDM are under-reported. Show less
Engels, N.; Nat, P.B. van der; Ankersmid, J.W.; Prick, J.C.M.; Parent, E.; The, R.; ... ; Dorpel, M.A. van den 2022
Background: Patient decision aids (PtDAs) support patients and clinicians in shared decision-making (SDM). Real-world outcome information may improve patients' risk perception, and help patients... Show moreBackground: Patient decision aids (PtDAs) support patients and clinicians in shared decision-making (SDM). Real-world outcome information may improve patients' risk perception, and help patients make decisions congruent with their expectations and values. Our aim was to develop an online PtDA to support kidney failure treatment modality decision-making, that: 1) provides patients with real-world outcome information, and 2) facilitates SDM in clinical practice. Methods: The International Patient Decision Aids Standards (IPDAS) development process model was complemented with a user-centred and convergent mixed-methods approach. Rapid prototyping was used to develop the PtDA with a multidisciplinary steering group in an iterative process of co-creation. The results of an exploratory evidence review and a needs-assessment among patients, caregivers, and clinicians were used to develop the PtDA. Seven Dutch teaching hospitals and two national Dutch outcome registries provided real-world data on selected outcomes for all kidney failure treatment modalities. Alpha and beta testing were performed to assess the prototype and finalise development. An implementation strategy was developed to guide implementation of the PtDA in clinical practice. Results: The 'Kidney Failure Decision Aid' consists of three components designed to help patients and clinicians engage in SDM: 1) a paper hand-out sheet, 2) an interactive website, and 3) a personal summary sheet. A 'patients-like-me' infographic was developed to visualise survival probabilities for each treatment modality on the website. Other treatment outcomes were incorporated as event rates (e.g. hospitalisation rates) or explained in text (e.g. the flexibility of each treatment modality). No major revisions were needed after alpha and beta testing. During beta testing, some patients ignored the survival probabilities because they considered these too confronting. Nonetheless, patients agreed that every patient has the right to choose whether they want to view this information. Patients and clinicians believed that the PtDA would help patients make informed decisions, and that it would support values- and preferences-based decision-making. Implementation of the PtDA has started in October 2020. Conclusions: The 'Kidney Failure Decision Aid' was designed to facilitate SDM in clinical practice and contains real-world outcome information on all kidney failure treatment modalities. It is currently being investigated for its effects on SDM in a clinical trial. Show less
Objectives: The integration of shared decision making (SDM) and patient-centered communication (PCC) is needed to actively involve patients in decision making. This study examined the relationship... Show moreObjectives: The integration of shared decision making (SDM) and patient-centered communication (PCC) is needed to actively involve patients in decision making. This study examined the relationship between shared decision making and patient-centered communication. Methods: In 82 videotaped hospital outpatient consultations by 41 medical specialists from 18 disciplines, we assessed the extent of shared decision making by the OPTION5 score and patient-centered communication by the Four Habits Coding Scheme (4HCS), and analyzed the occurrence of a high versus low degree (above or below median) of SDM and/or PCC, and its relation to patient satisfaction scores. Results: In comparison to earlier studies, we observed comparable 4HCS scores and relatively low OPTION5 scores. The correlation between the two was weak (r = 0.29, p = 0.009). In 38% of consultations, we observed a combination of high SDM and low PCC scores or vice versa. The combination of a high SDM and high PCC, which was observed in 23% of consultations, was associated with significantly higher patient satisfaction scores. Conclusion: Shared decision making and patient-centered communication are not synonymous and do not always co-exist. Practice implications: The value of integrated training of shared decision making and patient-centered communication should be further explored. Show less
Background: There is a great need for the development of personalized prediction models (PPMs) that can predict the rate of disease progression for persons with Parkinson's disease (PD), based on... Show moreBackground: There is a great need for the development of personalized prediction models (PPMs) that can predict the rate of disease progression for persons with Parkinson's disease (PD), based on their individual characteristics. In this study, we aimed to clarify the perspective of persons diagnosed with PD on the value of such hypothetical PPMs. Methods: We organized four focus group discussions, each including five persons with PD who were diagnosed within the last 5 years. The sessions focused on what they think of receiving a personalized prediction; what outcomes are important to them; if and how the possibility of influencing the prognosis would change the way they think of personalized predictions; how they deal with the uncertainty from a PPM; and what barriers and facilitators they expect for using a PPM. Results: The wish of persons with PD for receiving personalized prognostic information was highly heterogenous, for various reasons. Most persons with PD would like to receive more personalized prognostic information, mainly to better prepare themselves and their loved ones for the future. The prediction provided should be as personalized as possible, and there should be adequate supervision and coaching by a professional when providing the information. They were particularly interested in receiving prognostic information when their interventions would be available that could subsequently influence the identified prognostic factor and thereby affect the disease course beneficially. Conclusion: Most persons with PD in this study want more insight into their own future by means of prediction models, provided that this is explained and supervized properly by professionals. Patient or Public Contribution: Two patient-researchers were involved in the study design, conduct of the study, interpretation of the data and in preparation of the manuscript. Show less
Objectives To identify what patient-related characteristics have been reported to be associated with the occurrence of shared decision-making (SDM) about treatment. Design Scoping review.... Show moreObjectives To identify what patient-related characteristics have been reported to be associated with the occurrence of shared decision-making (SDM) about treatment. Design Scoping review. Eligibility criteria Peer-reviewed articles in English or Dutch reporting on associations between patient-related characteristics and the occurrence of SDM for actual treatment decisions. Information sources COCHRANE Library, Embase, MEDLINE, PsycInfo, PubMed and Web of Science were systematically searched for articles published until 25 March 2019. Results The search yielded 5289 hits of which 53 were retained. Multiple categories of patient characteristics were identified: (1) sociodemographic characteristics (eg, gender), (2) general health and clinical characteristics (eg, symptom severity), (3) psychological characteristics and coping with illness (eg, self-efficacy) and (4) SDM style or preference. Many characteristics showed no association or unclear relationships with SDM occurrence. For example, for female gender positive, negative and, most frequently, non-significant associations were seen. Conclusions A large variety of patient-related characteristics have been studied, but for many the association with SDM occurrence remains unclear. The results will caution often-made assumptions about associations and provide an important step to target effective interventions to foster SDM with all patients. Show less
Objectives: We have developed two Dutch questionnaires to assess the shared decision-making (SDM) process in oncology; the iSHAREpatient and iSHAREphysician. In this study, we aimed to determine:... Show moreObjectives: We have developed two Dutch questionnaires to assess the shared decision-making (SDM) process in oncology; the iSHAREpatient and iSHAREphysician. In this study, we aimed to determine: scores, construct validity, test-retest agreement (iSHAREpatient), and inter-rater (iSHAREpatient-iSHAREphysician) agreement. Methods: Physicians from seven Dutch hospitals recruited cancer patients, and completed the iSHAREphysician and SDM-Questionnaire-physician version. Their patients completed the: iSHAREpatient, nine-item SDM-Questionnaire, Decisional Conflict Scale, Combined Outcome Measure for Risk communication And treatment Decision-making Effectiveness, and five-item Perceived Efficacy in Patient-Physician Interactions. We formulated, respectively, one (iSHAREphysician) and 10 (iSHAREpatient) a priori hypotheses regarding correlations between the iSHARE questionnaires and questionnaires assessing related constructs. To assess test-retest agreement patients completed the iSHAREpatient again 1-2 weeks later. Results: In total, 151 treatment decision-making processes with unique patients were rated. Dimension and total iSHARE scores were high both in patients and physicians. The hypothesis on the iSHAREphysician and 9/10 hypotheses on the iSHAREpatient were confirmed. Test-retest and inter-rater agreement were >.60 for most items. Conclusions: The iSHARE questionnaires show high scores, have good construct validity, substantial test-retest agreement, and moderate inter-rater agreement. Practice implications: Results from the iSHARE questionnaires can inform both physician- and patient-directed efforts to improve SDM in clinical practice. Show less
Verberne, W.R.; Stiggelbout, A.M.; Bos, W.J.W.; Delden, J.J.M. van 2022
An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease (CKD), involving dialysis or conservative care. Shared decision-making (SDM) is... Show moreAn increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease (CKD), involving dialysis or conservative care. Shared decision-making (SDM) is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient's values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further implementation. A shift from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient's perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient's relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD. Show less
Background: Shared decision-making (SDM) is particularly important in oncology as many treatments involve serious side effects, and treatment decisions involve a trade-off between benefits and... Show moreBackground: Shared decision-making (SDM) is particularly important in oncology as many treatments involve serious side effects, and treatment decisions involve a trade-off between benefits and risks. However, the implementation of SDM in oncology care is challenging, and clinicians state that it is difficult to apply SDM in their actual workplace. Training clinicians is known to be an effective means of improving SDM but is considered time consuming. Objective: This study aims to address the effectiveness of an individual SDM training program using the concept of deliberate practice. Methods: This multicenter, single-blinded randomized clinical trial will be performed at 12 Dutch hospitals. Clinicians involved in decisions with oncology patients will be invited to participate in the study and allocated to the control or intervention group. All clinicians will record 3 decision-making processes with 3 different oncology patients. Clinicians in the intervention group will receive the following SDM intervention: completing e-learning, reflecting on feedback reports, performing a self-assessment and defining 1 to 3 personal learning questions, and participating in face-to-face coaching. Clinicians in the control group will not receive the SDM intervention until the end of the study. The primary outcome will be the extent to which clinicians involve their patients in the decision-making process, as scored using the Observing Patient Involvement-5 instrument. As secondary outcomes, patients will rate their perceived involvement in decision-making, and the duration of the consultations will be registered. All participating clinicians and their patients will receive information about the study and complete an informed consent form beforehand. Results: This trial was retrospectively registered on August 03, 2021. Approval for the study was obtained from the ethical review board (medical research ethics committee Delft and Leiden, the Netherlands [N20.170]). Recruitment and data collection procedures are ongoing and are expected to be completed by July 2022; we plan to complete data analyses by December 2022. As of February 2022, a total of 12 hospitals have been recruited to participate in the study, and 30 clinicians have started the SDM training program. Conclusions: This theory-based and blended approach will increase our knowledge of effective and feasible training methods for clinicians in the field of SDM. The intervention will be tailored to the context of individual clinicians and will target the knowledge, attitude, and skills of clinicians. The patients will also be involved in the design and implementation of the study. Show less
Neve, O.M.; Jansen, J.C.; Koot, R.W.; Ridder, M. de; Benthem, P.P.G. van; Stiggelbout, A.M.; Hensen, E.F. 2022
Objective: Vestibular schwannoma management aims to maintain optimal quality of life (QoL) while preventing severe sequelae of the tumor or its treatment. This study assessed long-term QoL of... Show moreObjective: Vestibular schwannoma management aims to maintain optimal quality of life (QoL) while preventing severe sequelae of the tumor or its treatment. This study assessed long-term QoL of patients with vestibular schwannoma in relation to treatment modality and decisional regret. Study Design: A longitudinal study, in which clinical and QoL data were used that were cross-sectionally acquired in 2014 and again in 2020 from the same patient group. Setting: A tertiary expert center for vestibular schwannoma care in the Netherlands. Methods: QoL was measured by the Penn Acoustic Quality of Life (PANQOL) scale. Changes in time were assed using a linear mixed model. In addition, the Decision Regret Scale was analyzed. Results: Of 867 patients, 536 responded (62%), with a median follow-up of 11 years. All PANQOL subdomain scores remained stable over time and did not exceed minimal clinically important difference (MCID) levels. Time since treatment did not affect QoL. Patients had comparable average QoL scores and proportions of patients with changing QoL scores (ie, exceeding the MCID) over time, irrespective of the received initial treatment. Female patients and those who required salvage therapy (either by radiotherapy or surgery) reported a lower QoL. The latter patient group reported the highest decisional regret. Conclusion: On average, the long-term QoL of patients with vestibular schwannoma is comparable for patients under active surveillance and those who have received active treatment, and it remains stable over time. This suggests that, on average, preservation of QoL of patients with vestibular schwannoma is feasible when adequately managed. Show less
Background Although shared decision making is championed as the preferred model for patient care by patient organizations, researchers and medical professionals, its application in daily practice... Show moreBackground Although shared decision making is championed as the preferred model for patient care by patient organizations, researchers and medical professionals, its application in daily practice remains limited. We previously showed that residents more often prefer paternalistic decision making than their supervisors. Because both the views of residents on the decision-making process in medical consultations and the reasons for their 'paternalism preference' are unknown, this study explored residents' views on the decision-making process in medical encounters and the factors affecting it. Methods We interviewed 12 residents from various specialties at a large Dutch teaching hospital in 2019-2020, exploring how they involved patients in decisions. All participating residents provided written informed consent. Data analysis occurred concurrently with data collection in an iterative process informing adaptations to the interview topic guide when deemed necessary. Constant comparative analysis was used to develop themes. We ceased data collection when information sufficiency was achieved. Results Participants described how active engagement of patients in discussing options and decision making was influenced by contextual factors (patient characteristics, logistical factors such as available time, and supervisors' recommendations) and by limitations in their medical and shared decision-making knowledge. The residents' decision-making behavior appeared strongly affected by their conviction that they are responsible for arriving at the correct diagnosis and providing the best evidence-based treatment. They described shared decision making as the process of patients consenting with physician-recommended treatment or patients choosing their preferred option when no best evidence-based option was available. Conclusions Residents' decision making appears to be affected by contextual factors, their medical knowledge, their knowledge about SDM, and by their beliefs and convictions about their professional responsibilities as a doctor, ensuring that patients receive the best possible evidence-based treatment. They confuse SDM with acquiring informed consent with the physician's treatment recommendations and with letting patients decide which treatment they prefer in case no evidence based guideline recommendation is available. Teaching SDM to residents should not only include skills training, but also target residents' perceptions and convictions regarding their role in the decision-making process in consultations. Show less
Staalduinen, D.J. van; Bekerom, P. van den; Groeneveld, S.; Kidanemariam, M.; Stiggelbout, A.M.; Akker-van Marle, M.E. van den 2022
Background: The aim of this study was to identify and summarize how value-based healthcare (VBHC) is conceptualized in the literature and implemented in hospitals. Furthermore, an overview was... Show moreBackground: The aim of this study was to identify and summarize how value-based healthcare (VBHC) is conceptualized in the literature and implemented in hospitals. Furthermore, an overview was created of the effects of both the implementation of VBHC and the implementation strategies used.Methods: A scoping review was conducted by searching online databases for articles published between January 2006 and February 2021. Empirical as well as non-empirical articles were included.Results: 1729 publications were screened and 62 were used for data extraction. The majority of the articles did not specify a conceptualization of VBHC, but only conceptualized the goals of VBHC or the concept of value. Most hospitals implemented only one or two components of VBHC, mainly the measurement of outcomes and costs or Integrated Practice Units (IPUs). Few studies examined effects. Implementation strategies were described rarely, and were evaluated even less.Conclusions: VBHC has a high level of interpretative variability and a common conceptualization of VBHC is therefore urgently needed. VBHC was proposed as a shift in healthcare management entailing six reinforcing steps, but hospitals have not implemented VBHC as an integrative strategy. VBHC implementation and effectiveness could benefit from the interdisciplinary collaboration between healthcare and management science. Show less
Background Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its... Show moreBackground Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its development. Aim In this study we seek to assess in oncology if there is a need for adaptation of the current SDM model to ethnic minorities and to formulate possible adjustments. Design This study is embedded in empirical bioethics, an interdisciplinary approach integrating empirical data with ethical reasoning to formulate normative conclusions regarding a practice. For the empirical social scientific part, a cross-sectional qualitative study will be conducted; for the ethical reflection the Reflective Equilibrium will be used to develop a coherent view on the application of SDM among ethnic minorities in oncology. Method Semi-structured interviews combined with visual methods (timelines and relational maps) will be held with healthcare professionals (HCPs), ethnic minority patients, and their relatives to identify values steering the behavior of these actors in SDM. In addition, focus groups (FGs) will be held with ethnic minority community members to identify value structures at the group level. Respondents will be recruited through organizations with access to ethnic minorities and collaborating hospitals. Data will be analyzed using a reflexive thematic analysis through the lens of Schwartz's value theory. The results of the empirical phase will be included in the RE to formulate possible adjustments of the SDM model, if needed. Discussion The integration of empirical data with ethical reflection is an innovative method in decision-making. This method enables a systematic and profound assessment of the need for adaptation of SDM and the formulation of theoretically and empirically based suggestions for adaptations of the model. Findings of this study may enrich the SDM model. Show less
Heuvel, L. van den; Meinders, M.J.; Post, B.; Bloem, B.R.; Stiggelbout, A.M. 2022
Background: The large variety in symptoms and treatment effects across different persons with Parkinson's disease (PD) warrants a personalized approach, ensuring that the best decision is made for... Show moreBackground: The large variety in symptoms and treatment effects across different persons with Parkinson's disease (PD) warrants a personalized approach, ensuring that the best decision is made for each individual. We aimed to further clarify this process of personalized decision-making, from the perspective of medical professionals. Methods: We audio-taped 52 consultations with PD patients and their neurologist or PD nurse-specialist, in 6 outpatient clinics. We focused coding of the transcripts on which decisions were made and on if and how decisions were personalized. We subsequently interviewed professionals to elaborate on how and why decisions were personalized, and which decisions would benefit most from a more personalized approach. Results: Most decisions were related to medication, referral or lifestyle. Professionals balanced clinical factors, including individual (disease-) characteristics, and non-clinical factors, including patients' preference, for each type of decision. These factors were often not explicitly discussed with the patient. Professionals experienced difficulties in personalizing decisions, mostly because evidence on the impact of characteristics of an individual patient on the outcome of the decision is unavailable. Categories of decisions for which professionals emphasized the importance of a more personalized perspective include choices not only for medication and advanced treatments, but also for referrals, lifestyle and diagnosis. Conclusions: Clinical decision-making is a complex process, influenced by many different factors that differ for each decision and for each individual. In daily practice, it proves difficult to tailor decisions to individual (disease-) characteristics, probably because sufficient evidence on the impact of these individual characteristics on outcomes is lacking. Show less
Backgrounds Research on shared decision-making (SDM) has mainly focused on decisions about treatment (e.g., medication or surgical procedures). Little is known about the decision-making process for... Show moreBackgrounds Research on shared decision-making (SDM) has mainly focused on decisions about treatment (e.g., medication or surgical procedures). Little is known about the decision-making process for the numerous other decisions in consultations. Objectives We assessed to what extent patients are actively involved in different decision types in medical specialist consultations and to what extent this was affected by medical specialist, patient, and consultation characteristics. Design Analysis of video-recorded encounters between medical specialists and patients at a large teaching hospital in the Netherlands. Participants Forty-one medical specialists (28 male) from 18 specialties, and 781 patients. Main Measure Two independent raters classified decisions in the consultations in decision type (main or other) and decision category (diagnostic tests, treatment, follow-up, or other advice) and assessed the decision-making behavior for each decision using the Observing Patient Involvement (OPTION)(5) instrument, ranging from 0 (no SDM) to 100 (optimal SDM). Scheduled and realized consultation duration were recorded. Key Result In the 727 consultations, the mean (SD) OPTION5 score for the main decision was higher (16.8 (17.1)) than that for the other decisions (5.4 (9.0), p < 0.001). The main decision OPTION5 scores for treatment decisions (n = 535, 19.2 (17.3)) were higher than those for decisions about diagnostic tests (n = 108, 14.6 (16.8)) or follow-up (n = 84, 3.8 (8.1), p < 0.001). This difference remained significant in multilevel analyses. Longer consultation duration was the only other factor significantly associated with higher OPTION5 scores (p < 0.001). Conclusion Most of the limited patient involvement was observed in main decisions (versus others) and in treatment decisions (versus diagnostic, follow-up, and advice). SDM was associated with longer consultations. Physicians' SDM training should help clinicians to tailor promotion of patient involvement in different types of decisions. Physicians and policy makers should allow sufficient consultation time to support the application of SDM in clinical practice. Show less
Objectives: To assess whether consultants do what they say they do in reaching decisions with their patients. Design: Cross-sectional analysis of hospital outpatient encounters, comparing... Show moreObjectives: To assess whether consultants do what they say they do in reaching decisions with their patients. Design: Cross-sectional analysis of hospital outpatient encounters, comparing consultants' self-reported usual decision-making style to their actual observed decision-making behaviour in video-recorded encounters. Setting: Large secondary care teaching hospital in the Netherlands. Participants: 41 consultants from 18 disciplines and 781 patients. Primary and secondary outcome measure With the Control Preference Scale, the self-reported usual decision-making style was assessed (paternalistic, informative or shared decision making). Two independent raters assessed decision-making behaviour for each decision using the Observing Patient Involvement (OPTION)(5) instrument ranging from 0 (no shared decision making (SDM)) to 100 (optimal SDM). Results: Consultants reported their usual decision-making style as informative (n=11), shared (n=16) and paternalistic (n=14). Overall, patient involvement was low, with mean (SD) OPTION5 scores of 16.8 (17.1). In an unadjusted multilevel analysis, the reported usual decision-making style was not related to the OPTION5 score (p>0.156). After adjusting for patient, consultant and consultation characteristics, higher OPTION5 scores were only significantly related to the category of decisions (treatment vs the other categories) and to longer consultation duration (p<0.001). Conclusions: The limited patient involvement that we observed was not associated with the consultants' self-reported usual decision-making style. Consultants appear to be unconsciously incompetent in shared decision making. This can hinder the transfer of this crucial communication skill to students and junior doctors. 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
Purpose Shared decision making calls for clinician communication strategies that aim to foster choice awareness and to present treatment options neutrally, such as by not showing a preference.... Show morePurpose Shared decision making calls for clinician communication strategies that aim to foster choice awareness and to present treatment options neutrally, such as by not showing a preference. Evidence for the effectiveness of these communication strategies to enhance patient involvement in treatment decision making is lacking. We tested the effects of 2 strategies in an online randomized video-vignettes experiment. Methods We developed disease-specific video vignettes for rheumatic disease, cancer, and kidney disease showcasing a physician presenting 2 treatment options. We tested the strategies in a 2 (choice awareness communication present/absent) by 2 (physician preference communication present/absent) randomized between-subjects design. We asked patients and disease-naive participants to view 1 video vignette while imagining being the patient and to report perceived room for involvement (primary outcome), understanding of treatment information, treatment preference, satisfaction with the consultation, and trust in the physician (secondary outcomes). Differences across experimental conditions were assessed using 2-way analyses of variance. Results A total of 324 patients and 360 disease-naive respondents participated (mean age, 52 +/- 14.7 y, 54% female, 56% lower educated, mean health literacy, 12 +/- 2.1 on a 3-15 scale). The results showed that choice awareness communication had a positive (M-present = 5.2 v. M-absent = 5.0, P = 0.042, eta(2)(partial) = 0.006) and physician preference communication had no (M-present = 5.0 v. M-absent = 5.1, P = 0.144, eta(2)(partial) = 0.003) significant effect on perceived room for involvement in decision making. Physician preference communication steered patients toward preferring that treatment option (M-present = 4.7 v. M-absent = 5.3, P = 0.006, eta(2)(partial) = 0.011). The strategies had no significant effect on understanding, satisfaction, or trust. Conclusions This is the first experimental evidence for a small effect of fostering choice awareness and no effect of physician preference on perceived room to participate in decision making. Physician preference steered patients toward preferring that option. Show less
![Patient role in SDM models: Re: Berger Z, Galasinski D, Scalia P, Dong K, Blunt HB, Elwyn G, "The Submissive Silence of Others: Examining Definitions of Shared Decision Making" [Patient Educ Couns (2021) doi: https://doi.org/10.1016/j.pec.2021.10.026]](/sites/all/modules/custom/islandora_solr_search/images/defaultimg.png?solr_nav%5Bid%5D=38266a4cdebbe24d615b&solr_nav%5Bpage%5D=0&solr_nav%5Boffset%5D=4)
