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
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
Staalduinen, D.J. van; Bekerom, P.E.A. van den; Groeneveld, S.M.; 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
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
Objective: Shared decision making (SDM) for cancer treatment yields positive results. However, it appears that discussing essential topics for SDM is not fully integrated into treatment decision... Show moreObjective: Shared decision making (SDM) for cancer treatment yields positive results. However, it appears that discussing essential topics for SDM is not fully integrated into treatment decision making yet. Therefore, we aim to explore to what extent discussion of therapy options, treatment consequences, and personal priorities is preferred and perceived by (former) cancer patients.Methods: An online questionnaire was distributed by the Dutch Federation of Cancer Patient Organisations among (former) cancer patients in 2018.Results: Among 3785 (former) cancer patients, 3254 patients (86%) had discussed treatments with their health care provider (HCP) and were included for analysis. Mean age was 62.1 +/- 11.5; 55% were female. Discussing the option to choose no (further) treatment was rated by 2751 (84.5%) as very important (median score 9/10-IQR 8-10). Its occurrence was perceived by 28% (N = 899), and short- and long-term treatment consequences were discussed in 81% (N = 2626) and 53% (N = 1727), respectively. An unmet wish to discuss short- and long-term consequences was reported by 22% and 26%, respectively. Less than half of the (former) cancer patients perceived that personal priorities (44%) and future plans (34%) were discussed.Conclusion: In the perception of (former) cancer patients, several essential elements for effective SDM are insufficiently discussed during cancer treatment decision making. Show less
Plas-Krijgsman, W.G. van der; Giardiello, D.; Putter, H.; Steyerberg, E.W.; Bastiaannet, E.; Stiggelbout, A.M.; ... ; Glas, N.A. de 2021
Background Current prediction tools for breast cancer outcomes are not tailored to the older patient, in whom competing risk strongly influences treatment effects. We aimed to develop and validate... Show moreBackground Current prediction tools for breast cancer outcomes are not tailored to the older patient, in whom competing risk strongly influences treatment effects. We aimed to develop and validate a prediction tool for 5-year recurrence, overall mortality, and other-cause mortality for older patients (aged >= 65 years) with early invasive breast cancer and to estimate individualised expected benefits of adjuvant systemic treatment.Methods We selected surgically treated patients with early invasive breast cancer (stage I-III) aged 65 years or older from the population-based FOCUS cohort in the Netherlands. We developed prediction models for 5-year recurrence, overall mortality, and other-cause mortality using cause-specific Cox proportional hazard models. External validation was performed in a Dutch Cancer registry cohort. Performance was evaluated with discrimination accuracy and calibration plots.Findings We included 2744 female patients in the development cohort and 13631 female patients in the validation cohort. Median age was 74.8 years (range 65-98) in the development cohort and 76.0 years (70-101) in the validation cohort. 5-year follow-up was complete for more than 99% of all patients. We observed 343 and 1462 recurrences, and 831 and 3594 deaths, of which 586 and 2565 were without recurrence, in the development and validation cohort, respectively. The area under the receiver-operating-characteristic curve at 5 years in the external dataset was 0.76 (95% CI 0.75-0.76) for overall mortality, 0.76 (0.76-0.77) for recurrence, and 0.75 (0.74-0.75) for other-cause mortality.Interpretation The PORTRET tool can accurately predict 5-year recurrence, overall mortality, and other-cause mortality in older patients with breast cancer. The tool can support shared decision making, especially since it provides individualised estimated benefits of adjuvant treatment. Copyright (C) 2021 The Author(s). Published by Elsevier Ltd. Show less
Neve, O.M.; Benthem, P.P.G. van; Stiggelbout, A.M.; Hensen, E.F. 2021
Background Patient Reported Outcomes (PROs) are subjective outcomes of disease and/or treatment in clinical research. For effective evaluations of PROs, high response rates are crucial. This study... Show moreBackground Patient Reported Outcomes (PROs) are subjective outcomes of disease and/or treatment in clinical research. For effective evaluations of PROs, high response rates are crucial. This study assessed the impact of the delivery method on the patients' response rate. Methods A cohort of patients with a unilateral vestibular schwannoma (a condition with substantial impact on quality of life, requiring prolonged follow-up) was assigned to three delivery methods: email, regular mail, and hybrid. Patients were matched for age and time since the last visit to the outpatient clinic. The primary outcome was the response rate, determinants other than delivery mode were age, education and time since the last consultation. In addition, the effect of a second reminder by telephone was evaluated. Results In total 602 patients participated in this study. The response rates for delivery by email, hybrid, and mail were 45, 58 and 60%, respectively. The response rates increased after a reminder by telephone to 62, 67 and 64%, respectively. A lower response rate was associated with lower level of education and longer time interval since last outpatient clinic visit. Conclusion The response rate for PRO varies by delivery method. PRO surveys by regular mail yield the highest response rate, followed by hybrid and email delivery methods. Hybrid delivery combines good response rates with the ease of digitally returned questionnaires. Show less
Purpose Solutions to improve the implementation of shared decision making (SDM) in oncology often focus on the consultation, with limited effects. In this study, we used a service design... Show morePurpose Solutions to improve the implementation of shared decision making (SDM) in oncology often focus on the consultation, with limited effects. In this study, we used a service design perspective on the care path of locally advanced pancreatic cancer (LAPC). We aimed to understand how experiences of patients, their significant others, and medical professionals over the entire care path accumulate to support their ability to participate in SDM. Participants and methods We used qualitative interviews including design research techniques with 13 patients, 13 significant others, and 11 healthcare professionals, involved in the diagnosis or treatment of LAPC. The topic list was based on the literature and an auto-ethnography of the illness trajectory by a caregiver who is also a service design researcher. We conducted a thematic content analysis to identify themes influencing the ability to participate in SDM. Results We found four interconnected themes: (1) Decision making is an ongoing and unpredictable process with many decision moments, often unannounced. The unpredictability of the disease course, tumor response to treatment, and consequences of choices on the quality of life complicate decision making; (2) Division of roles, tasks, and collaboration among professionals and between professionals and patients and/or their significant others is often unclear to patients and their significant others; (3) It involves "work" for patients and their significant others to obtain and understand information; (4) In "their disease journey," patients are confronted with unexpected energy drains and energy boosts, that influence their level of empowerment to participate in SDM. Conclusion The service design perspective uncovered how the stage for SDM is often set outside the consultation, which might explain the limited effect currently seen of interventions focusing on consultation itself. Our findings serve as a starting point for (re)designing care paths to improve the implementation of SDM in oncology. Show less
Neve, O.M.; Jansen, J.C.; Mey, A.G.L. van der; Koot, R.W.; Ridder, M. de; Benthem, P.P.G. van; ... ; Hensen, E.F. 2021
Background Employment is an important factor in quality of life. For vestibular schwannoma (VS) patients, employment is not self-evident, because of the sequelae of the disease or its treatment and... Show moreBackground Employment is an important factor in quality of life. For vestibular schwannoma (VS) patients, employment is not self-evident, because of the sequelae of the disease or its treatment and their effects on daily life. Objectives This study assessed employment status, sick leave (absenteeism) and being less productive at work (presenteeism) in the long-term follow-up of VS patients, and evaluated the impact of treatment strategy (active surveillance, surgery or radiotherapy). Methods A cross-sectional survey study was performed in a tertiary university hospital in the Netherlands. Patients completed the iMTA-post productivity questionnaire (iPCQ). Employment status was compared to that of the general Dutch population. Employment, absenteeism and presenteeism were compared between patients under active surveillance, patients after radiotherapy and post-surgical patients. Result In total 239 patients participated, of which 67% were employed at the time of the study. Only 14% had a disability pension, which was comparable to the age-matched general Dutch population. The proportion of patients with absenteeism was 8%, resulting in a 4% reduction of working hours. Presenteeism was reported by 14% of patients, resulting in a 2% reduction of working hours. The median number of working hours per week was 36, and since the diagnosis, these hours had been reduced by 6%. There were no significant differences between treatment modalities. Conclusion On average, long-term employment status and working hours of VS patients are comparable to the age-matched general population. Treatment strategies do not seem to differentially impact on long-term employment of VS patients. Show less
Background Health-care providers increasingly have to discuss uncertainty with patients. Awareness of uncertainty can affect patients variably, depending on how it is communicated. To date, no... Show moreBackground Health-care providers increasingly have to discuss uncertainty with patients. Awareness of uncertainty can affect patients variably, depending on how it is communicated. To date, no overview existed for health-care professionals on how to discuss uncertainty.Objective To generate an overview of available recommendations on how to communicate uncertainty with patients during clinical encounters.Search strategy A scoping review was conducted. Four databases were searched following the PRISMA-ScR statement. Independent screening by two researchers was performed of titles and abstracts, and subsequently full texts.Inclusion criteria Any (non-)empirical papers were included describing recommendations for any health-care provider on how to orally communicate uncertainty to patients.Data extraction Data on provided recommendations and their characteristics (eg, target group and strength of evidence base) were extracted. Recommendations were narratively synthesized into a comprehensible overview for clinical practice.Results Forty-seven publications were included. Recommendations were based on empirical findings in 23 publications. After narrative synthesis, 13 recommendations emerged pertaining to three overarching goals: (a) preparing for the discussion of uncertainty, (b) informing patients about uncertainty and (c) helping patients deal with uncertainty.Discussion and conclusions A variety of recommendations on how to orally communicate uncertainty are available, but most lack an evidence base. More substantial research is needed to assess the effects of the suggested communicative approaches. Until then, health-care providers may use our overview of communication strategies as a toolbox to optimize communication about uncertainty with patients.Patient or public contribution Results were presented to stakeholders (physicians) to check and improve their practical applicability. Show less
