The decision for immediate breast reconstruction after mastectomy is a preference-sensitive decision. For preference-sensitive decisions, shared decision making is propagated, but not yet properly... Show moreThe decision for immediate breast reconstruction after mastectomy is a preference-sensitive decision. For preference-sensitive decisions, shared decision making is propagated, but not yet properly implemented. Furthermore, prior studies identified unmet decision support needs in women considering breast reconstruction. With this thesis we aimed to optimally support women in making an informed decision about breast reconstruction. For this purpose, we developed an online patient decision aid (pDA) for breast cancer patients considering immediate breast reconstruction after mastectomy. This thesis describes the development and evaluation of this pDA. In our multicenter randomized controlled trial including 250 participants, we found that women who used the pDA felt better prepared for decision making, than women who received usual care. Other outcomes did not differ between both groups. Show less
In this thesis we examined patient readiness for shared decision making (SDM) about treatment. We first assessed associations between patient-related characteristics and the occurrence of SDM.... Show moreIn this thesis we examined patient readiness for shared decision making (SDM) about treatment. We first assessed associations between patient-related characteristics and the occurrence of SDM. Overall, we did not find consistent associations between characteristics such as age or education level, and the extent to which SDM occurred (measured from the perspective of patients, clinicians, or observers). Second, we assessed what patients need to be ready, i.e., enabled and well-equipped, to participate in SDM about treatment. We identified a wide range of skills, cognitions, and emotions. For instance, patients need to be able to understand the relevant information, be able to and dare to express themselves in consultations with clinicians, and experience an adequate amount of time to talk to clinicians and to consider the options. Finally, we developed a questionnaire, the ReadySDM. The aim of the ReadySDM is to retrospectively measure the extent to which patients felt ready for SDM during a treatment decision-making process. The questionnaire has the potential to identify novel insights into patients’ support needs and ways to enhance SDM in daily practice. Show less
Aims/hypothesis There is a lack of e-health systems that integrate the complex variety of aspects relevant for diabetes self-management. We developed and field-tested an e-health system (POWER2DM)... Show moreAims/hypothesis There is a lack of e-health systems that integrate the complex variety of aspects relevant for diabetes self-management. We developed and field-tested an e-health system (POWER2DM) that integrates medical, psychological and behavioural aspects and connected wearables to support patients and healthcare professionals in shared decision making and diabetes self-management.Methods Participants with type 1 or type 2 diabetes (aged >18 years) from hospital outpatient diabetes clinics in the Netherlands and Spain were randomised using randomisation software to POWER2DM or usual care for 37 weeks. This RCT assessed the change in HbA(1c) between the POWER2DM and usual care groups at the end of the study (37 weeks) as a primary outcome measure. Participants and clinicians were not blinded to the intervention. Changes in quality of life (QoL) (WHO-5 Well-Being Index [WHO-5]), diabetes self-management (Diabetes Self-Management Questionnaire - Revised [DSMQ-R]), glycaemic profiles from continuous glucose monitoring devices, awareness of hypoglycaemia (Clarke hypoglycaemia unawareness instrument), incidence of hypoglycaemic episodes and technology acceptance were secondary outcome measures. Additionally, sub-analyses were performed for participants with type 1 and type 2 diabetes separately.Results A total of 226 participants participated in the trial (108 with type 1 diabetes; 118 with type 2 diabetes). In the POWER2DM group (n=111), HbA(1c) decreased from 60.6 +/- 14.7 mmol/mol (7.7 +/- 1.3%) to 56.7 +/- 12.1 mmol/mol (7.3 +/- 1.1%) (means +/- SD, p<0.001), compared with no change in the usual care group (n=115) (baseline: 61.7 +/- 13.7 mmol/mol, 7.8 +/- 1.3%; end of study: 61.0 +/- 12.4 mmol/mol, 7.7 +/- 1.1%; p=0.19) (between-group difference 0.24%, p=0.008). In the sub-analyses in the POWER2DM group, HbA(1c) in participants with type 2 diabetes decreased from 62.3 +/- 17.3 mmol/mol (7.9 +/- 1.6%) to 54.3 +/- 11.1 mmol/mol (7.1 +/- 1.0%) (p<0.001) compared with no change in HbA(1c) in participants with type 1 diabetes (baseline: 58.8 +/- 11.2 mmol/mol [7.5 +/- 1.0%]; end of study: 59.2 +/- 12.7 mmol/mol [7.6 +/- 1.2%]; p=0.84). There was an increase in the time during which interstitial glucose levels were between 3.0 and 3.9 mmol/l in the POWER2DM group, but no increase in clinically relevant hypoglycaemia (interstitial glucose level below 3.0 mmol/l). QoL improved in participants with type 1 diabetes in the POWER2DM group compared with the usual care group (baseline: 15.7 +/- 3.8; end of study: 16.3 +/- 3.5; p=0.047 for between-group difference). Diabetes self-management improved in both participants with type 1 diabetes (from 7.3 +/- 1.2 to 7.7 +/- 1.2; p=0.002) and those with type 2 diabetes (from 6.5 +/- 1.3 to 6.7 +/- 1.3; p=0.003) within the POWER2DM group. The POWER2DM integrated e-health support was well accepted in daily life and no important adverse (or unexpected) effects or side effects were observed.Conclusions/interpretation POWER2DM improves HbA(1c) levels compared with usual care in those with type 2 diabetes, improves QoL in those with type 1 diabetes, improves diabetes self-management in those with type 1 and type 2 diabetes, and is well accepted in daily life.Trial registration ClinicalTrials.gov NCT03588104.Funding This study was funded by the European Union's Horizon 2020 Research and Innovation Programme (grant agreement number 689444). Show less
Schuijt, H.J.; Smeeing, D.P.J.; Verberne, W.R.; Groenwold, R.H.H.; Delden, J.J.M. van; Leenen, L.P.H.; Velde, D. van der 2023
Geriatric patients often present to the hospital in acute surgical settings. In these settings, shared decision-making as equal partners can be challenging. Surgeons should recognize that geriatric... Show moreGeriatric patients often present to the hospital in acute surgical settings. In these settings, shared decision-making as equal partners can be challenging. Surgeons should recognize that geriatric patients, and frail patients in particular, may sometimes benefit from de-escalation of care in a palliative setting rather than curative treatment. To provide more person-centred care, better strategies for improved shared decision-making need to be developed and implemented in clinical practice. A shift in thinking from a disease-oriented paradigm to a patient-goal-oriented paradigm is required to provide better person-centred care for older patients. We may greatly improve the collaboration with patients if we move parts of the decision-making process to the pre-acute phase. In the pre-acute phase appointing legal representatives, having goals of care conversations, and advance care planning can help give physicians an idea of what is important to the patient in acute settings.When making decisions as equal partners is not possible, a greater degree of physician responsibility may be appropriate. Physicians should tailor the "sharedness" of the decision-making process to the needs of the patient and their family. Show less
Introduction: As the population is ageing, the number of older patients with multimorbidity including cancer continues to increase. To improve care for these patients, the European Union-funded... Show moreIntroduction: As the population is ageing, the number of older patients with multimorbidity including cancer continues to increase. To improve care for these patients, the European Union-funded project "Streamlined Geriatric and Oncological evaluation based on IC Technology" (GERONTE) was initiated to develop a new, patientcentred, holistic care pathway. The aim of this paper is to analyse what challenges are encountered in everyday clinical practice according to patients, their informal caregivers, and healthcare professionals as a starting point for the development of the care pathway.Materials and Methods: An expert panel of cancer and geriatrics specialists participated in an online survey to answer what challenges they experience in caring for older patients with multimorbidity including cancer and what treatment outcomes could be improved. Furthermore, in-depth interviews with older patients and their informal caregivers were organised to assess what challenges they experience.Results: Healthcare professionals (n = 36) most frequently mentioned the challenge of choosing the best treatment in light of the lack of evidence in this population and how to handle interactions between the (cancer) treatment and multimorbidities. Twelve patients and caregivers participated, and they most frequently mentioned challenges related to treatment outcomes, such as how to deal with symptoms of disease or treatment and how to maintain quality of life. From the challenges, five main themes emerged that should be taken into account when developing a new care pathway for older patients with multimorbidity including cancer. Two themes focus on decision making aspects such as personalized treatment recommendations and inclusion of nononcologic information, two focus on patient support and monitoring to maintain quality of life and functioning, and one overarching theme addresses care coordination to prevent fragmentation of care.Discussion: In conclusion, the management of older patients with multimorbidity including cancer is complex and although progress has been made on improving aspects of their care, challenges remain and patients are at risk of receiving inappropriate, unnecessary, and potentially harmful treatment. A patient-centred care pathway that integrates solutions to the five main themes and that moves away from a single-disease centred approach is needed. Show less
Dementia is a progressive, life-limiting disease. A palliative approach to care, that focuses on the quality of life of people with dementia and their relatives, is therefore indicated. Advance... Show moreDementia is a progressive, life-limiting disease. A palliative approach to care, that focuses on the quality of life of people with dementia and their relatives, is therefore indicated. Advance care planning is core to palliative care. Relatives play a major role in this, because people with dementia often become unable to indicate their preferences for future care. Palliative dementia care is still sub optimally implemented, however. Nursing home staff and relatives of people with dementia need information about dementia and palliative care to ensure it is optimally implemented. Also, ongoing communication between everyone involved in the care of a person with dementia is required, including discussions about future care needs. This facilitates a palliative care approach in dementia. These conclusions result from a survey among elderly care physicians, a systematic review, care plan data in nursing homes and an intervention study in two nursing homes: the mySupport study. It appears that relatives want timely information about the end of life with dementia. That way they can prepare. Although physicians are usually the ones who educate relatives, nursing staff often have a stronger relationship with relatives. After training, they can play an important role in providing information. Show less
Background: Reporting individual clinical and patient-reported outcomes to patients during consultations may add to patients' disease knowledge and activation and stimulate Shared Decision Making ... Show moreBackground: Reporting individual clinical and patient-reported outcomes to patients during consultations may add to patients' disease knowledge and activation and stimulate Shared Decision Making (SDM). These outcomes can be presented over time in a clear way by the means of dashboarding. We aimed to systematically develop a Chronic Kidney Disease (CKD) dashboard designed to support consultations, test its usability and explore conditions for optimal use in practice. Methods: For development a participatory approach with patients and healthcare professionals (HCPs) from three hospitals was used. Working groups and patient focus groups were conducted to identify needs and inform the dashboard's design. Usability was tested in patient interviews. A focus group with HCPs was held to identify conditions for optimal use of the dashboard in daily practice. Results: A dashboard was developed for CKD patients stage 3b-4 visualizing both clinical and patient-reported outcomes over time for use during consultations and accessible for patients at home. Both HCPs and patients indicated that the dashboard can: motivate patients in their treatment by providing feedback on outcomes over time; improve consultation conversations by enhanced preparation of both HCPs and patients; better inform patients, thereby facilitating shared decision making. HCPs and patients both stated that setting a topic agenda for the consultation together is important in effectively discussing the dashboard during consultations. Moreover, the dashboard should not dominate the conversation. Lastly, findings of the usability tests provided design requirements for optimal user-friendliness and clarity. Conclusions: Dashboarding can be a valuable way of reporting individual outcome information to patients and their clinicians as findings suggest it may stimulate patient activation and facilitate decision making. Co-creation with patients and HCPs was essential for successful development of the dashboard. Gained knowledge from the co-creation process can inform others wishing to develop similar digital tools for use in clinical practice. Show less
Objectives: Purposeful SDM posits four modes of shared decision making (SDM). The use of each mode depends on the type of problem of care that is being addressed. We sought to identify how current... Show moreObjectives: Purposeful SDM posits four modes of shared decision making (SDM). The use of each mode depends on the type of problem of care that is being addressed. We sought to identify how current observer-based SDM measures apply to each mode of Purposeful SDM.Methods: Four coders, working independently, evaluated 192 items pertaining to 12 observer-based SDM process measures. They classified the items into 6 themes that vary across Purposeful SDM modes and then into one of the four modes (weighing, negotiating, problem-solving, developing insight). Disagreements were resolved by consensus.Results: The items were classified as pertaining to the following themes: problem (28), roles/participation (84), options (62), preferences (21), decision (15), and evaluation (6). They were then classified as pertaining particularly to the SDM modes of weighing (54), negotiating (5), problem-solving (0), and developing insight (0) modes, with 191 items applying broadly to all modes of Purposeful SDM.Conclusions: Observer-based SDM measures describe behaviors pertinent to all modes but lack items sensitive to behaviors particular to some modes of SDM. Practice Implications: New or revised observer-based measures of the SDM process could help estimate the extent to which the appropriate SDM mode is being used to address the patient's problem.(c) 2021 Elsevier B.V. All rights reserved. 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
In this thesis, we aimed to develop and validate a patient and a physician questionnaire to measure the shared decision making (SDM) process in oncology. We identified SDM measurement challenges:... Show moreIn this thesis, we aimed to develop and validate a patient and a physician questionnaire to measure the shared decision making (SDM) process in oncology. We identified SDM measurement challenges: there is limited evidence on measurement properties, patients’ role is not assessed while it is present in SDM models, patients and healthcare professionals have been involved only to a limited extent in the development of SDM measurement instruments, and a reflective measurement model is often assumed, while a formative might be more appropriate. The aim of this thesis was therefore to develop and validate questionnaires to assess the SDM process in oncology from both the patient and the physician viewpoints. We chose the oncology setting because it is a setting in which patients often face preference-sensitive decisions, and in which most patients prefer an active or collaborative role in treatment decision making. To inform the development and validation process of our questionnaires, we used the original Consensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist and we wrote two reviews: one on existing SDM measurement instruments and one on existing SDM models. The iSHARE questionnaires shows adequate measurement properties 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
Ouden, H. den; Vos, R.C.; Pieterse, A.H.; Rutten, G.E.H.M. 2022
Aims: To analyse the performance of a Shared Decision Making (SDM) intervention, we assessed perceived and experienced SDM in General Practitioners (GPs) and patients with type 2 diabetes (T2DM)... Show moreAims: To analyse the performance of a Shared Decision Making (SDM) intervention, we assessed perceived and experienced SDM in General Practitioners (GPs) and patients with type 2 diabetes (T2DM).Methods: Cluster-Randomised Controlled Trial (cRCT) testing the effect of a decision aid. Opinions and experienced role regarding SDM were assessed in 72 patients and 18 GPs with the SDM-Q-9 (range 0-45) and Control Preferences Scale (CPS, 0-5), and observed SDM with the OPTION5 (0-20). SDM at baseline was compared to 24 months' follow-up using paired t-tests.Results: At baseline, perceived levels of SDM did not significantly differ between GPs and patients with T2DM (difference of 2.3, p = 0.24). At follow-up, mean patients' perceived level of SDM was 7.9 lower compared to baseline (p < 0.01), whereas GPs' opinions had not changed significantly. After both visits, mean CPS scores differed significantly between patients and GPs. OPTION5 scores ranged between 6 and 20.Conclusion: Patients and GPs perceived similar baseline levels of SDM. Two years later, patients perceived less SDM, while GPs did not change their opinion. SDM was appropriate immediately after training, but perhaps GPs fell back in old habits over time. We recommend repeated SDM training. 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
Objectives: To assess the extent to which shared decision making (SDM) can take place in telemedicine (remote SDM). Methods: We searched Medline, Cochrane, and Scopus from 2010 until August 7th,... Show moreObjectives: To assess the extent to which shared decision making (SDM) can take place in telemedicine (remote SDM). Methods: We searched Medline, Cochrane, and Scopus from 2010 until August 7th, 2020 for articles on remote SDM in the care of any patient using any technology. We also conducted a search for telemedicine articles citing key reports on SDM outcome measures. Two reviewers independently screened titles and abstracts, reviewed full text eligible studies, and synthesized their content using thematic analysis. Results: Of the 12 eligible articles, most were European with patients with chronic disease or mental and behavioral health. 8 articles used synchronous remote SDM and 1 used asynchronous remote SDM. Themes related to interactional workability of both telemedicine technologies and SDM emerged, namely access to broadband, digital literacy, and satisfaction with the convenience of remote visits. Conclusions: Telemedicine technologies may foster virtual interactions that support remote SDM, which, in turn, may promote productive patient-clinician interactions and patient-centered care. Practice implications: Digitally-mediated consultations surged amidst the COVID-19 pandemic. The extent to which SDM frameworks developed for in-person use need any adaptation for remote SDM remains unclear. Investment in innovation, design, implementation, and effectiveness research to advance remote SDM are needed. Show less
Heuvel, J.F.M. van den; Hogeveen, M.; Holzik, M.L.; Heijst, A.F.J. van; Bekker, M.N.; Geurtzen, R. 2022
Background In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal... Show moreBackground In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal counseling, preferably using shared decision making, is needed to agree on the treatment option in case labor progresses. This article described the development of a digital decision aid (DA) to support pregnant women, partners and clinicians in prenatal counseling for imminent extreme premature labor. Methods This DA is developed following the International Patient Decision Aid Standards. The Dutch treatment guideline and the Dutch recommendations for prenatal counseling in extreme prematurity were used as basis. Development of the first prototype was done by expert clinicians and patients, further improvements were done after alpha testing with involved clinicians, patients and other experts (n = 12), and beta testing with non-involved clinicians and patients (n = 15). Results The final version includes information, probabilities and figures depending on users' preferences. Furthermore, it elicits patient values and provides guidance to aid parents and professionals in making a decision for either early intensive care or palliative comfort care in threatening extreme premature delivery. Conclusion A decision aid was developed to support prenatal counseling regarding the decision on early intensive care versus palliative comfort care in case of extreme premature delivery at 24 weeks gestation. It was well accepted by parents and healthcare professionals. Our multimedia, digital DA is openly available online to support prenatal counseling and personalized, shared decision-making in imminent extreme premature labor. Show less
BACKGROUNDThe interest in shared decision making has increased considerably over the last couple of decades. Decision aids (DAs) can help in shared decision making. Especially when there is more... Show moreBACKGROUNDThe interest in shared decision making has increased considerably over the last couple of decades. Decision aids (DAs) can help in shared decision making. Especially when there is more than one reasonable option and outcomes between treatments are comparable.AIMTo investigate if the use of DAs decreases decisional conflict in patients when choosing treatment for knee or hip osteoarthritis (OA).METHODSIn this multi-center unblinded randomized controlled trial of patients with knee or hip OA were included from four secondary and tertiary referral centers. One-hundred-thirty-one patients who consulted an orthopedic surgeon for the first time with knee or hip OA were included between December 2014 and January 2016. After the first consultation, patients were randomly assigned by a computer to the control group which was treated according to standard care, or to the intervention group which was treated with standard care and provided with a DA. After the first consultation, patients were asked to complete questionnaires about decisional conflict (DCS), satisfaction, anxiety (PASS-20), gained knowledge, stage of decision making and preferred treatment. Follow-up was carried out after 26 wk and evaluated decisional conflict, satisfaction, anxiety, health outcomes (HOOS/KOOS), quality of life (EQ5D) and chosen treatment.RESULTSAfter the first consultation, patients in the intervention group (mean DCS: 25 out of 100, SD: 13) had significantly (P value: 0.00) less decisional conflict compared to patients in the control group (mean DCS: 39 out of 100, SD 11). The mean satisfaction score for the given information (7.6 out of 10, SD: 1.8 vs 8.6 out of 10, SD: 1.1) (P value: 0.00), mean satisfaction score with the physician (8.3 out of 10, SD: 1.7 vs 8.9 out of 10, SD: 0.9) (P value: 0.01) and the mean knowledge score (3.3 out of 4, SD: 0.9 vs 3.7 out of, SD: 0.6) (P value: 0.01) were all significantly higher in the intervention group. At 26-wk follow-up, only 75 of 131 patients (57%) were available for analysis. This sample is too small for meaningful analysis.CONCLUSIONProviding patients with an additional DA may have a positive effect on decisional conflict after the first consultation. Due to loss to follow-up we are unsure if this effect remains over time. Show less
The main objective of this thesis was to determine the value of dialysis and conservative care for older patients with advanced chronic kidney disease. To do so, we compared a combination of... Show moreThe main objective of this thesis was to determine the value of dialysis and conservative care for older patients with advanced chronic kidney disease. To do so, we compared a combination of patient-relevant outcomes and treatment costs in a cohort of older patients (≥70 years old) who chose either dialysis or conservative care after a shared decision-making process. Overall, we observed that older patients who chose dialysis lived longer compared with older patients who chose conservative care. There was, however, little or no significant survival advantage in patients aged ≥80 years old and patients aged ≥70 years old with severe comorbidity who chose dialysis over conservative care, while similar outcomes on quality of life and symptoms were observed between both patient groups, and lower treatment burden and treatment costs were observed in patients who chose conservative care. Therefore, we conclude that conservative care is a viable treatment alternative to dialysis in selected older patients. In clinical practice, conservative care needs to become available and openly discussed as one of the possible treatment pathways for advanced chronic kidney disease in older patients. Moreover, a shift towards a person-centered process of shared decision-making is needed that aims to focus on all that matters to the patient as person, in order to come to a treatment plan that fits best with the patient. Show less
Kunneman, M.; Branda, M.E.; Ridgeway, J.L.; Tiedje, K.; May, C.R.; Linzer, M.; ... ; Shah, N.D. 2021
Purpose: To determine the effectiveness of a shared decision-making (SDM) tool versus guideline-informed usual care in translating evidence into primary care, and to explore how use of the tool... Show morePurpose: To determine the effectiveness of a shared decision-making (SDM) tool versus guideline-informed usual care in translating evidence into primary care, and to explore how use of the tool changed patient perspectives about diabetes medication decision making. Methods: In this mixed methods multicenter cluster randomized trial, we included patients with type 2 diabetes mellitus and their primary care clinicians. We compared usual care with or without a within-encounter SDM conversation aid. We assessed participant-reported decisions made and quality of SDM (knowledge, satisfaction, and decisional conflict), clinical outcomes, adherence, and observer-based patient involvement in decision-making (OPTION12-scale). We used semi-structured interviews with patients to understand their perspectives. Results: We enrolled 350 patients and 99 clinicians from 20 practices and interviewed 26 patients. Use of the conversation aid increased post-encounter patient knowledge (correct answers, 52% vs. 45%, p = 0.02) and clinician involvement of patients (Mean between-arm difference in OPTION12, 7.3 (95% CI 3, 12); p = 0.003). There were no between-arm differences in treatment choice, patient or clinician satisfaction, encounter length, medication adherence, or glycemic control. Qualitative analyses highlighted differences in how clinicians involved patients in decision making, with intervention patients noting how clinicians guided them through conversations using factors important to them. Conclusions: Using an SDM conversation aid improved patient knowledge and involvement in SDM without impacting treatment choice, encounter length, medication adherence or improved diabetes control in patients with type 2 diabetes. Future interventions may need to focus specifically on patients with signs of poor treatment fit. Show less
Toupin-April, K.; Decary, S.; Wit, M. de; Meara, A.; Barton, J.L.; Fraenkel, L.; ... ; Tugwell, P. 2021
Objective: To gain consensus on the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials of shared decision making (SDM) interventions.Methods: The process followed... Show moreObjective: To gain consensus on the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials of shared decision making (SDM) interventions.Methods: The process followed the OMERACT Filter 2.1 methodology, and used consensus-building methods, with patients involved since the inception. After developing the draft core domain set in previous research, we conducted five steps: (i) improving the draft core domain set; (ii) developing and disseminating whiteboard videos to promote its understanding; (iii) conducting an electronic survey to gather feedback on the draft core domain set; (iv) finalizing the core domain set and developing summaries, a plenary session video and discussion boards to promote its understanding; and (v) conducting virtual workshops with voting to endorse the core domain set.Results: A total of 167 participants from 28 countries answered the survey (62% were patients/caregivers). Most participants rated domains as relevant (81%-95%) and clear (82%-93%). A total of 149 participants (n = 48 patients/caregivers, 101 clinicians/researchers) participated in virtual workshops and voted on the proposed core domain set which received endorsement by 95%. Endorsed domains are: 1-Knowledge of options, their potential benefits and harms; 2-Chosen option aligned with each patient's values and preferences; 3-Confidence in the chosen option; 4-Satisfaction with the decision-making process; 5-Adherence to the chosen option and 6-Potential negative consequences of the SDM intervention.Conclusion: We achieved consensus among an international group of stakeholders on the OMERACT core domain set for rheumatology trials of SDM interventions. Future research will develop the Core Outcome Measurement Set.Clinical significance: Prior to this study, there had been no consensus on the OMERACT core domain set for SDM interventions. The current study shows that the OMERACT core domain set achieved a high level of endorsement by key stakeholders, including patients/caregivers, clinicians and researchers.(c) 2021 Elsevier Inc. All rights reserved. Show less
Keij, S.M.; Duijn-Bakker, N. van; Stiggelbout, A.M.; Pieterse, A.H. 2021
Objectives: Shared decision making (SDM) requires an active role from patients, which might be difficult for some. We aimed to identify what patients need to be ready (i.e., well-equipped and... Show moreObjectives: Shared decision making (SDM) requires an active role from patients, which might be difficult for some. We aimed to identify what patients need to be ready (i.e., well-equipped and enabled) to participate in SDM about treatment, and what patient- and decision-related characteristics may influence readiness.Methods: We conducted semi-structured interviews with patients and professionals (physicians, nurses, general practitioners, and researchers). Interviews were analyzed inductively.Results: We identified five elements of patient readiness: 1) understanding of and attitude towards SDM, 2) health literacy, 3) skills in communicating and claiming space, 4) self-awareness, and 5) consideration skills. We identified 10 characteristics that may influence elements of readiness: 1) age, 2) cultural background, 3) educational background, 4) close relationships, 5) mental illness, 6) emotional distress, 7) acceptance of diagnosis, 8) clinician-patient relationship, 9) decision type, and 10) time.Conclusions: We identified a wide range of elements that may constitute patient readiness for SDM. Readiness might vary between and within patients. This variation may result from differences in patientand decision-related characteristics.Practice implications: Clinicians should be aware that not all patients may be ready for SDM at a given moment and may need support to enhance their readiness. (C) 2020 The Authors. Published by Elsevier B.V. Show less
