IntroductionThe assessment of using patient-reported outcomes (PROs) within comprehensive care follow-up programmes, specifically focused on health screening, remains largely unexplored. PROs were... Show moreIntroductionThe assessment of using patient-reported outcomes (PROs) within comprehensive care follow-up programmes, specifically focused on health screening, remains largely unexplored. PROs were implemented in our late effects and comprehensive care programme after paediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. The programme focuses solely on screening of physical and mental health and on discussing PROs during the consultation.MethodsThe primary method of this study was semistructured interviews to explore the perspective of both patients and healthcare providers' (HCP) on the use of PROs, which were thematically analyzed. Additionally, an explorative quantitative approach with patient-reported experience measures (PREMS) was used, with a pretest–posttest design, to assess whether the use of PROs was accompanied by more patient-centred care.ResultsFrom the patient-interviews (N = 15) four themes were extracted: use of PROs (1) help to discuss topics; (2) make the patients feel understood; (3) create a moment of self-reflection; and (4) make consultations more efficient. Pre- and postimplementation analysis of PREMs (N = 40) did not show significant differences in terms of patient-centeredness.ConclusionOur results demonstrate the added value of integrating PROs for health screening purposes within the long-term follow-up programme after paediatric HSCT, as perceived by both patient and HCP. With the active use of PROs, patients are stimulated to consciously assess their health status.Patient ContributionThis study included patients as participants. Caregivers were approached if patients were below a certain age. Additionally, preliminary results were shared with all patients (including nonparticipants) during a patient conference day. Show less
Horst, D.E.M. van der; Hofstra, N.; Uden-Kraan, C.F. van; Stiggelbout, A.M.; Dorpel, M.A. van den; Pieterse, A.H.; Bos, W.J.W. 2023
Rationale & Objective: Research on shared decision making (SDM) in chronic kidney disease (CKD) has focused almost exclusively on the modality of kidney replacement treatment. We explored what... Show moreRationale & Objective: Research on shared decision making (SDM) in chronic kidney disease (CKD) has focused almost exclusively on the modality of kidney replacement treatment. We explored what other CKD decisions are recognized by patients, what their preferences and experiences are regarding these decisions, and how decisions are made during their interactions with medical care professionals. Study Design: Cross-sectional study.Setting & Participants: Patients with CKD receiving (outpatient) care in 1 of 2 Dutch hospitals.Exposure: Patients' preferred decisional roles for treatment decisions were measured using the Control Preferences Scale survey administered after a health care visit with medical professionals. Outcome: Number of decisions for which patients experienced a decisional role that did or did not match their preferred role. Observed levels of SDM and motivational interviewing in audio recordings of health care visits, measured using the 4-step SDM instrument (4SDM) and Motivational Interviewing Treatment Integrity coding tools.Analytical Approach: The results were characterized using descriptive statistics, including differences in scores between the patients' experienced and preferred decisional roles.Results: According to the survey (n = 122) patients with CKD frequently reported decisions regarding planning (112 of 122), medication changes (82 of 122), or lifestyle changes (59 of 122). Of the 357 reported decisions in total, patients preferred that clinicians mostly (125 of 357) or fully (101 of 357) make the decisions. For 116 decisions, they preferred a shared decisional role. For 151 of 357 decisions, the patients' preferences did not match their experiences. Decisions were experienced as "less shared/patient-directed" (76 of 357) or "more shared/patient-directed" (75 of 357) than preferred. Observed SDM in 118 coded decisions was low (median 4; range, 0 - 22). Motivational inter-viewing techniques were rarely used. Limitations: Potential recall and selection bias, and limited generalizability.Conclusions: We identified multiple discrepancies between preferred, experienced, and observed SDM in health care visits for CKD. Although pa-tients varied in their preferred decisional role, a considerable number of patients expressed a pref-erence for shared decision making for many de-cisions. However, SDM behavior during the health care visits was observed infrequently. Show less
BackgroundAn important element of value-based health care (VBHC) is interprofessional collaboration in integrated practice units (IPUs) for the delivery of the complete cycle of care. High levels... Show moreBackgroundAn important element of value-based health care (VBHC) is interprofessional collaboration in integrated practice units (IPUs) for the delivery of the complete cycle of care. High levels of interprofessional collaboration between clinical and nonclinical staff in IPUs are assumed rather than proven. Factors that may stimulate interprofessional collaboration in the context of VBHC are underresearched.PurposeThe aim of this study was to examine relational coordination (RC) in VBHC and its antecedents.ApproachA questionnaire was used to examine the association of both team practices and organizational conditions with interprofessional collaboration in IPUs. Gittell's Relational Coordination Survey was drawn upon to measure interprofessional collaboration by capturing the relational dynamics in coordinated working. The questionnaire also included measures of team practices (team meetings and boundary spanning behavior) and organizational conditions (task interdependence and time constraints).ResultsThe number of different professional groups participating in team meetings is positively associated with RC in IPUs. Boundary spanning behavior, task interdependence, and time constraints are not associated with RC.ConclusionsIn IPUs, the diversity within interprofessional team meetings is important for establishing high-quality communication and relationships.Practice ImplicationsHospital managers should prioritize facilitating and encouraging shared meetings to enhance RC levels among professional groups in IPUs. Show less
Veer, M.R. de; Hermus, M.; Zijden, C.J. van der; Wilk, B.J. van der; Wijnhoven, B.P.L.; Stiggelbout, A.M.; ... ; Kranenburg, L.W. 2023
Introduction: Few studies have been conducted into how physicians use steering behaviour that may persuade patients to choose for a particular treatment, let alone to participate in a randomised... Show moreIntroduction: Few studies have been conducted into how physicians use steering behaviour that may persuade patients to choose for a particular treatment, let alone to participate in a randomised trial. The aim of this study is to assess if and how surgeons use steering behaviour in their information provision to patients in their choice to participate in a stepped-wedge cluster randomised trial investigating an organ sparing treatment in (curable) oesophageal cancer (SANO trial).Materials and methods: A qualitative study was performed. Thematic content analysis was applied to audiotaped and transcribed consultations of twenty patients with eight different oncological surgeons in three Dutch hospitals. Patients could choose to participate in a clinical trial in which an experimental treatment of 'active surveillance' (AS) was offered. Patients who did not want to participate underwent standard treatment: neoadjuvant chemoradiotherapy followed by oesophagectomy.Results: Surgeons used various techniques to steer patients towards one of the two options, mostly to-wards AS. The presentation of pros and cons of treatment options was imbalanced: positive framing of AS was used to steer patients towards the choice for AS, and negative framing of AS to make the choice for surgery more attractive. Further, steering language, i.e. suggestive language, was used, and surgeons seemed to use the timing of the introduction of the different treatment options, to put more focus on one of the treatment options.Conclusion: Awareness of steering behaviour can help to guide physicians in more objectively informing patients on participation in future clinical trials.(c) 2023 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/). Show less
Bense, J.E.; Stiggelbout, A.M.; Lankester, A.C.; Pagter, A.P.J. de 2023
BackgroundSurvival rates have continued to increase for pediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. Despite the crucial role of caregivers in this high... Show moreBackgroundSurvival rates have continued to increase for pediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. Despite the crucial role of caregivers in this high-intensity treatment, knowledge about long-term parental impact is lacking.ProcedureThis cross-sectional study assessed parental distress and everyday problems in parents of patients 2 years and older after pediatric HSCT for a nonmalignant disease using Distress Thermometer for Parents (DT-P), and compared outcomes to matched Dutch parents of healthy children and Dutch parents of children with a chronic condition (CC).ResultsMedian follow-up was 5.3 years (interquartile range [IQR]: 2.9-8.6). Underlying diseases were inborn errors of immunity (N = 30), hemoglobinopathies (N = 13), and bone marrow failure (N = 27). Mothers of pediatric HSCT recipients (N = 70) reported comparable overall distress levels to mothers of healthy children, but experienced more distress related to parenting problems, specifically managing their child's emotions, discussing disease consequences, and fostering independence. Fathers of HSCT recipients (N = 45) reported higher overall distress levels and had more emotional distress compared to fathers of healthy children.ConclusionsOverall, parental distress and everyday problems of parents of HSCT recipients are comparable to those of parents of children with CC. However, there is ongoing parental burden, both emotional and in parenting, long-term after HSCT compared to parents of healthy children, and the type of burden differs between mothers and fathers. These results indicate that individualized parental supportive care should not remain restricted to the acute hospitalization phase, but also be actively offered during long-term follow-up after pediatric HSCT. Show less
Staalduinen, D.J. van; Bekerom, P.E.A. van den; Groeneveld, S.M.; Stiggelbout, A.M.; Van den Akker-van Marle, M.E. 2023
Background: An important element of value-based health care (VBHC) is interprofessional collaboration in integrated practice units (IPUs) for the delivery of the complete cycle of care. High levels... Show moreBackground: An important element of value-based health care (VBHC) is interprofessional collaboration in integrated practice units (IPUs) for the delivery of the complete cycle of care. High levels of interprofessional collaboration between clinical and nonclinical staff in IPUs are assumed rather than proven. Factors that may stimulate interprofessional collaboration in the context of VBHC are underresearched.Purpose: The aim of this study was to examine relational coordination (RC) in VBHC and its antecedents.Approach: A questionnaire was used to examine the association of both team practices and organizational conditions with interprofessional collaboration in IPUs. Gittell’s Relational Coordination Survey was drawn upon to measure interprofessional collaboration by capturing the relational dynamics in coordinated working. The questionnaire also included measures of team practices (team meetings and boundary spanning behavior) and organizational conditions (task interdependence and time constraints).Results: The number of different professional groups participating in team meetings is positively associated with RC in IPUs. Boundary spanning behavior, task interdependence, and time constraints are not associated with RC.Conclusions: In IPUs, the diversity within interprofessional team meetings is important for establishing high-quality communication and relationships.Practice Implications: Hospital managers should prioritize facilitating and encouraging shared meetings to enhance RC levels among professional groups in IPUs. Show less
Background An important element of value-based health care (VBHC) is interprofessional collaboration in integrated practice units (IPUs) for the delivery of the complete cycle of care. High levels... Show moreBackground An important element of value-based health care (VBHC) is interprofessional collaboration in integrated practice units (IPUs) for the delivery of the complete cycle of care. High levels of interprofessional collaboration between clinical and nonclinical staff in IPUs are assumed rather than proven. Factors that may stimulate interprofessional collaboration in the context of VBHC are underresearched.Purpose The aim of this study was to examine relational coordination (RC) in VBHC and its antecedents.Approach A questionnaire was used to examine the association of both team practices and organizational conditions with interprofessional collaboration in IPUs. Gittell’s Relational Coordination Survey was drawn upon to measure interprofessional collaboration by capturing the relational dynamics in coordinated working. The questionnaire also included measures of team practices (team meetings and boundary spanning behavior) and organizational conditions (task interdependence and time constraints).Results The number of different professional groups participating in team meetings is positively associated with RC in IPUs. Boundary spanning behavior, task interdependence, and time constraints are not associated with RC.Conclusions In IPUs, the diversity within interprofessional team meetings is important for establishing high-quality communication and relationships.Practice Implications Hospital managers should prioritize facilitating and encouraging shared meetings to enhance RC levels among professional groups in IPUs. Show less
Staalduinen, D.J. van; Bekerom, P.E.A. van den; Groeneveld, S.M.; Franx, A.; Stiggelbout, A.M.; Akker-van Marle, M.E van den 2023
Introduction: An important aspect of Value-Based Healthcare (VBHC) is providing the full cycle of care for a specific medical condition through interprofessional collaboration. This requires... Show moreIntroduction: An important aspect of Value-Based Healthcare (VBHC) is providing the full cycle of care for a specific medical condition through interprofessional collaboration. This requires employees from diverse professional backgrounds to interact, but there is limited knowledge on how professionals perceive such interprofessional collaboration. We aimed to provide insight into how different professionals perceive Integrated Practice Unit (IPU) composition and what factors influence the quality of interprofessional collaboration within IPUs.Methods: A survey was administered to employees from different professional backgrounds (medical specialists, nurses, allied health professionals, administrative employees) working in IPUs to assess their perception of the composition of their IPU and the quality of the interactions. Subsequently, semi-structured interviews were conducted to gain a deeper understanding of the findings of the survey.Results: Medical specialists and nurses were most frequently considered to be part of an IPU and indicated that they have high quality interactions. Allied health professionals were less often considered part of the team by all other professional groups and all report low quality interaction with this group. The extent to which a professional group is perceived as a team member depends on their visibility, involvement in the treatment of the patient, and shared interest. Differences in the quality of interprofessional collaboration are influenced by organizational structures, knowledge of each other’s expertise, and by ways of communication.Conclusions: In VBHC, there seems to be a lack of common perception of an IPU’s composition and a failure to always achieve high quality interprofessional collaboration. Given the importance of interprofessional collaboration in VBHC, effort should be invested in achieving a shared understanding and improved collaboration. Show less
Introduction: An important aspect of Value-Based Healthcare (VBHC) is providing the full cycle of care for a specific medical condition through interprofessional collaboration. This requires... Show moreIntroduction: An important aspect of Value-Based Healthcare (VBHC) is providing the full cycle of care for a specific medical condition through interprofessional collaboration. This requires employees from diverse professional backgrounds to interact, but there is limited knowledge on how professionals perceive such interprofessional collaboration. We aimed to provide insight into how different professionals perceive Integrated Practice Unit (IPU) composition and what factors influence the quality of interprofessional collaboration within IPUs.Methods: A survey was administered to employees from different professional backgrounds (medical specialists, nurses, allied health professionals, administrative employees) working in IPUs to assess their perception of the composition of their IPU and the quality of the interactions. Subsequently, semi-structured interviews were conducted to gain a deeper understanding of the findings of the survey.Results: Medical specialists and nurses were most frequently considered to be part of an IPU and indicated that they have high quality interactions. Allied health professionals were less often considered part of the team by all other professional groups and all report low quality interaction with this group. The extent to which a professional group is perceived as a team member depends on their visibility, involvement in the treatment of the patient, and shared interest. Differences in the quality of interprofessional collaboration are influenced by organizational structures, knowledge of each other's expertise, and by ways of communication.Conclusions: In VBHC, there seems to be a lack of common perception of an IPU's composition and a failure to always achieve high quality interprofessional collaboration. Given the importance of interprofessional collaboration in VBHC, effort should be invested in achieving a shared understanding and improved collaboration. Show less
BackgroundStandardisation of outcome measures is integral to value-based healthcare (VBHC), which may conflict with patient-centred care, focusing on personalisation. ObjectivesWe aimed to provide... Show moreBackgroundStandardisation of outcome measures is integral to value-based healthcare (VBHC), which may conflict with patient-centred care, focusing on personalisation. ObjectivesWe aimed to provide an overview of measures used to assess the effect of VBHC implementation and to examine to what extent the evidence indicates that VBHC supports patient-centred care. DesignA scoping review guided by the Joanna Briggs Institute methodology. Sources of evidenceWe searched the following databases on 18 February 2021: Cochrane Library, EMBASE, MEDLINE and Web of Science. Eligibility criteriaWe included empirical papers assessing the effect of the implementation of VBHC, published after introduction of VBHC in 2006. Data extraction and synthesisTwo independent reviewers double-screened papers and data were extracted by one reviewer and checked by the other. We classified the study measures used in included papers into six categories: process indicator, cost measure, clinical outcome, patient-reported outcome, patient-reported experience or clinician-reported experience. We then assessed the patient-centredness of the study measures used. ResultsWe included 39 studies using 94 unique study measures. The most frequently used study measures (n=72) were process indicators, cost measures and clinical outcomes, which rarely were patient-centred. The less frequently used (n=20) patient-reported outcome and experience measures often measured a dimension of patient-centred care. ConclusionOur study shows that the evidence on VBHC supporting patient-centred care is limited, exposing a knowledge gap in VBHC research. The most frequently used study measures in VBHC research are not patient-centred. The major focus seems to be on measures of quality of care defined from a provider, institution or payer perspective. Show less
Horst, D.E.M. van der; Engels, N.; Hendrikx, J.; Dorpel, M.A. van den; Pieterse, A.H.; Stiggelbout, A.M.; ... ; Bos, W.J.W. 2023
IntroductionGuidelines on chronic kidney disease (CKD) recommend that nephrologists use clinical prediction models (CPMs). However, the actual use of CPMs seems limited in clinical practice. We... Show moreIntroductionGuidelines on chronic kidney disease (CKD) recommend that nephrologists use clinical prediction models (CPMs). However, the actual use of CPMs seems limited in clinical practice. We conducted a national survey study to evaluate: 1) to what extent CPMs are used in Dutch CKD practice, 2) patients' and nephrologists' needs and preferences regarding predictions in CKD, and 3) determinants that may affect the adoption of CPMs in clinical practice.MethodsWe conducted semi-structured interviews with CKD patients to inform the development of two online surveys; one for CKD patients and one for nephrologists. Survey participants were recruited through the Dutch Kidney Patient Association and the Dutch Federation of Nephrology.ResultsA total of 126 patients and 50 nephrologists responded to the surveys. Most patients (89%) reported they had discussed predictions with their nephrologists. They most frequently discussed predictions regarded CKD progression: when they were expected to need kidney replacement therapy (KRT) (n = 81), and how rapidly their kidney function was expected to decline (n = 68). Half of the nephrologists (52%) reported to use CPMs in clinical practice, in particular CPMs predicting the risk of cardiovascular disease. Almost all nephrologists (98%) reported discussing expected CKD trajectories with their patients; even those that did not use CPMs (42%). The majority of patients (61%) and nephrologists (84%) chose a CPM predicting when patients would need KRT in the future as the most important prediction. However, a small portion of patients indicated they did not want to be informed on predictions regarding CKD progression at all (10-15%). Nephrologists not using CPMs (42%) reported they did not know CPMs they could use or felt that they had insufficient knowledge regarding CPMs. According to the nephrologists, the most important determinants for the adoption of CPMs in clinical practice were: 1) understandability for patients, 2) integration as standard of care, 3) the clinical relevance.ConclusionEven though the majority of patients in Dutch CKD practice reported discussing predictions with their nephrologists, CPMs are infrequently used for this purpose. Both patients and nephrologists considered a CPM predicting CKD progression most important to discuss. Increasing awareness about existing CPMs that predict CKD progression may result in increased adoption in clinical practice. When using CPMs regarding CKD progression, nephrologists should ask whether patients want to hear predictions beforehand, since individual patients' preferences vary. Show less
Bense, J.E.; Haverman, L.; Asmuth, E.G.J. von; Louwerens, M.; Luijten, M.A.J.; Stiggelbout, A.M.; ... ; Pagter, A.P.J. de 2023
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
Poort, E.K.J. van der; Akker-van Marle, E. van den; Stiggelbout, A.M.; Hout, W.B. van den 2022
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
![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=c374188e37c956457e9d&solr_nav%5Bpage%5D=0&solr_nav%5Boffset%5D=14)
