Patient-reported outcome measures in value-based healthcare: A multiple methods study to assess patient-centredness.

OBJECTIVES: Value-based healthcare (VBHC) involves the use of standardised outcome measures, including patient-reported outcome measures (PROMs). This study aimed to assess to what extent discussion of PROMs is associated with patient- and person-centredness. METHODS: This study used a separate sample pre-/post-test design and multiple methods (observations, questionnaires, and interviews) in a VBHC care pathway for patients with a vestibular schwannoma, to assess to what extent the implementation of PROMs is associated with a difference in patient- and person-centredness. RESULTS: A total of 139 patients with a vestibular schwannoma and their four treating physicians were included in the study. No significant differences were found in observed patient-centredness (Mpre=6.71 ± 2.42 vs. Mpost=6.93 ± 2.01; P = 0.60) or patient-reported patient-centredness (Mpre=1.73 vs. Mpost=1.68; P = 0.63) and person-centredness after PROM implementation (Mpre=11.81 vs. Mpost=13.42; P = 0.34). We observed more discussion of patient-reported outcomes. However, a majority of patients did not expect PRO discussion in consultations. CONCLUSIONS: The implementation of standardised PROMs in a VBHC care pathway was associated with more discussion on patient-reported outcomes in clinical consultations. Overall, the implementation of PROMs was not observed or perceived as leading to more patient-centred consultations. PRACTICE IMPLICATIONS: Physicians should assess whether the discussion of PROMs add value collaboratively with patients.

What value structure underlies shared decision making? A qualitative synthesis of models of shared decision making.

OBJECTIVE: To construct the underlying value structure of shared decision making (SDM) models. METHOD: We included previously identified SDM models (n = 40) and 15 additional ones. Using a thematic analysis, we coded the data using Schwartz's value theory to define values in SDM and to investigate value relations. RESULTS: We identified and defined eight values and developed three themes based on their relations: shared control, a safe and supportive environment, and decisions tailored to patients. We constructed a value structure based on the value relations and themes: the interplay of healthcare professionals' (HCPs) and patients' skills [Achievement], support for a patient [Benevolence], and a good relationship between HCP and patient [Security] all facilitate patients' autonomy [Self-Direction]. These values enable a more balanced relationship between HCP and patient and tailored decision making [Universalism]. CONCLUSION: SDM can be realized by an interplay of values. The values Benevolence and Security deserve more explicit attention, and may especially increase vulnerable patients' Self-Direction. PRACTICE IMPLICATIONS: This value structure enables a comparison of values underlying SDM with those of specific populations, facilitating the incorporation of patients' values into treatment decision making. It may also inform the development of SDM measures, interventions, education programs, and HCPs when practicing.

Patient readiness for shared decision making about treatment: Conceptualisation and development of the ReadySDM.

INTRODUCTION: Shared decision making (SDM) requires an active role of both clinicians and patients. We aimed to conceptualise patient readiness for SDM about treatment, and to develop a patient questionnaire to assess readiness. METHODS: We used the results of a scoping review and a qualitative study to inform the patient readiness construct. We conducted five additional rounds of data collection to finalise the construct definition and develop the Patient Readiness for SDM Questionnaire (ReadySDM ) in an oncological setting: (1) longitudinal interviews with patients with cancer during and after a treatment decision-making process; (2) a pilot study among experts, clinicians, and patients for feedback on the concept and items; (3) a field test among (former) patients with cancer to test item format and content validity, and to reduce the number of items; (4) cognitive interviews with people with low literacy to test the comprehensibility of the questionnaire; and (5) a field test among (former) patients who faced a cancer treatment decision in the last year, to test the content validity of the final version of the questionnaire. RESULTS: A total of 251 people participated in the various rounds of data collection. We identified eight elements of patient readiness for SDM about treatment: (1) understanding of and attitude towards SDM; (2) information skills; (3) skills in communicating and claiming space; (4) self-awareness; (5) consideration skills; (6) self-efficacy; (7) emotional distress; and (8) experienced time. We developed the 20-item ReadySDM to retrospectively measure these elements in an oncological setting. CONCLUSION: We conducted a thorough procedure to conceptualise patient readiness and to develop the ReadySDM . The questionnaire aims to provide novel insights into ways to enhance SDM in daily practice. PATIENT OR PUBLIC CONTRIBUTION: Multiple people with lived experience were involved in various phases of the study. They were asked for input on the study design, the conceptualisation of readiness, and the development of the questionnaire.

Improving shared decision-making about cancer treatment through design-based data-driven decision-support tools and redesigning care paths: an overview of the 4D PICTURE project.

Background: Patients with cancer often have to make complex decisions about treatment, with the options varying in risk profiles and effects on survival and quality of life. Moreover, inefficient care paths make it hard for patients to participate in shared decision-making. Data-driven decision-support tools have the potential to empower patients, support personalized care, improve health outcomes and promote health equity. However, decision-support tools currently seldom consider quality of life or individual preferences, and their use in clinical practice remains limited, partly because they are not well integrated in patients' care paths. Aim and objectives: The central aim of the 4D PICTURE project is to redesign patients' care paths and develop and integrate evidence-based decision-support tools to improve decision-making processes in cancer care delivery. This article presents an overview of this international, interdisciplinary project. Design methods and analysis: In co-creation with patients and other stakeholders, we will develop data-driven decision-support tools for patients with breast cancer, prostate cancer and melanoma. We will support treatment decisions by using large, high-quality datasets with state-of-the-art prognostic algorithms. We will further develop a conversation tool, the Metaphor Menu, using text mining combined with citizen science techniques and linguistics, incorporating large datasets of patient experiences, values and preferences. We will further develop a promising methodology, MetroMapping, to redesign care paths. We will evaluate MetroMapping and these integrated decision-support tools, and ensure their sustainability using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework. We will explore the generalizability of MetroMapping and the decision-support tools for other types of cancer and across other EU member states. Ethics: Through an embedded ethics approach, we will address social and ethical issues. Discussion: Improved care paths integrating comprehensive decision-support tools have the potential to empower patients, their significant others and healthcare providers in decision-making and improve outcomes. This project will strengthen health care at the system level by improving its resilience and efficiency.

Improving the cancer patient journey and respecting personal preferences: an overview of the 4D PICTURE project The 4D PICTURE project aims to help cancer patients, their families and healthcare providers better undertstand their options. It supports their treatment and care choices, at each stage of disease, by drawing on large amounts of evidence from different types of European data. The project involves experts from many different specialist areas who are based in nine European countries. The overall aim is to improve the cancer patient journey and ensure personal preferences are respected.

The value of using patient-reported outcomes for health screening during long-term follow-up after paediatric stem cell transplantation for nonmalignant diseases.

INTRODUCTION: The 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. METHODS: The 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. RESULTS: From 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. CONCLUSION: Our 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 CONTRIBUTION: This 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.

Differing Professional Perspectives on the Interprofessional Collaboration in IPUs: A Mixed-methods Study.

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 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.

Relational coordination in value-based health care.

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 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.

Long-term parental distress after pediatric hematopoietic stem cell transplantation for nonmalignant diseases.

BACKGROUND: Survival 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. PROCEDURE: This 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). RESULTS: Median 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. CONCLUSIONS: Overall, 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.

Shared Decision Making in Health Care Visits for CKD: Patients' Decisional Role Preferences and Experiences.

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 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 (median4; range, 0 - 22). Motivational interviewing 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 patients varied in their preferred decisional role, a considerable number of patients expressed a preference for shared decision making for many decisions. However, SDM behavior during the health care visits was observed infrequently. PLAIN-LANGUAGE SUMMARY: Shared decision making (SDM) may be a valuable approach for common chronic kidney disease (CKD) decisions, but our knowledge is limited. We collected patient surveys after health care visits for CKD. Patients most frequently experienced decisions regarding planning, medication, and lifestyle. Three decisional roles were preferred by comparable numbers of patients: let the clinician alone decide, let the clinician decide for the most part, or "equally share" the decision. Patients' experiences of who made the decision did not always match their preferences. In audio recordings of the health care visits, we observed low levels of SDM behavior. These findings suggest that the preference for "sharing decisions" is often unmet for a large number of patients.

Does value-based healthcare support patient-centred care? A scoping review of the evidence.

BACKGROUND: Standardisation of outcome measures is integral to value-based healthcare (VBHC), which may conflict with patient-centred care, focusing on personalisation. OBJECTIVES: We 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. DESIGN: A scoping review guided by the Joanna Briggs Institute methodology. SOURCES OF EVIDENCE: We searched the following databases on 18 February 2021: Cochrane Library, EMBASE, MEDLINE and Web of Science. ELIGIBILITY CRITERIA: We included empirical papers assessing the effect of the implementation of VBHC, published after introduction of VBHC in 2006. DATA EXTRACTION AND SYNTHESIS: Two 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. RESULTS: We 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. CONCLUSION: Our 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.

Surgeon's steering behaviour towards patients to participate in a cluster randomised trial on active surveillance for oesophageal cancer: A qualitative study.

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 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 towards 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.

Patient-related characteristics considered to affect patient involvement in shared decision making about treatment: A scoping review of the qualitative literature.

OBJECTIVE: To identify patient-related characteristics considered to affect patient involvement in shared decision making (SDM) about treatment. METHODS: We conducted a scoping review of qualitative studies. We searched for literature across seven databases until March 2022, and included qualitative studies that focused on associations between patient-related characteristics and SDM about treatment in adults. We analyzed studies using an inductive thematic approach. RESULTS: The search yielded 5948 articles, of which 70 were included. We identified many different patient-related characteristics, which we grouped into four categories related to: (1) the individual who is facing the decision, (2) the decision, (3) the relationship between the patient and the clinician and others involved in the decision, and (4) the healthcare context. CONCLUSIONS: Studies report a variety of patient-related characteristics that may affect patient involvement in SDM. Amongst others, patients may need to feel informed, to understand their role in SDM, and be able to communicate. Involvement may be challenging with characteristics such as perceived time pressure, poor patient-clinician relationships, emotional distress, and severe illness. PRACTICE IMPLICATIONS: In order to truly involve patients in SDM, we might need to focus on characteristics such as patient emotions and relationship building, besides information provision and values clarification.

Assessing collaborative efforts of making care fit for each patient: A systematic review.

INTRODUCTION: For too many people, their care plans are designed without fully accounting for who they are, the lives they live, what matters to them or what they aspire to achieve. We aimed to summarize instruments capable of measuring dimensions of patient-clinician collaboration to make care fit. METHODS: We systematically searched several databases (Medline, Embase, Cochrane, Scopus and Web of Science) from inception to September 2021 for studies using quantitative measures to assess, evaluate or rate the work of making care fit by any participant in real-life clinical encounters. Eligibility was assessed in duplicate. After extracting all items from relevant instruments, we coded them deductively on dimensions relevant to making care fit (as presented in a recent Making Care Fit Manifesto), and inductively on the main action described. RESULTS: We included 189 papers, mostly from North America (N = 83, 44%) and in the context of primary care (N = 54, 29%). Half of the papers (N = 88, 47%) were published in the last 5 years. We found 1243 relevant items to assess efforts of making care fit, included within 151 instruments. Most items related to the dimensions 'Patient-clinician collaboration: content' (N = 396, 32%) and 'Patient-clinician collaboration: manner' (N = 382, 31%) and the least related to 'Ongoing and iterative process' (N = 22, 2%) and in 'Minimally disruptive of patient lives' (N = 29, 2%). The items referred to 27 specific actions. Most items referred to 'Informing' (N = 308, 25%) and 'Exploring' (N = 93, 8%), the fewest items referred to 'Following up', 'Comforting' and 'Praising' (each N = 3, 0.2%). DISCUSSION: Measures of the work that patients and clinicians do together to make care fit focus heavily on the content of their collaborations, particularly on exchanging information. Other dimensions and actions previously identified as crucial to making care fit are assessed infrequently or not at all. The breadth of extant measures of making care fit and the lack of appropriate measures of this key construct limit both the assessment and the successful implementation of efforts to improve patient care. PATIENT CONTRIBUTION: Patients and caregivers from the 'Making care fit Collaborative' were involved in drafting the dimensions relevant to patient-clinician collaboration.

Predicting outcomes in chronic kidney disease: needs and preferences of patients and nephrologists.

INTRODUCTION: Guidelines 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. METHODS: We 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. RESULTS: A 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. CONCLUSION: Even 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.

Late Effects in Pediatric Allogeneic Hematopoietic Stem Cell Transplantation for Nonmalignant Diseases: Proxy- and Patient-Reported Outcomes.

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 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.

For which decisions is Shared Decision Making considered appropriate? - A systematic review.

OBJECTIVE: To identify decision characteristics for which SDM authors deem SDM appropriate or not, and what arguments are used. METHODS: We applied two search strategies: we included SDM models from an earlier review (strategy 1) and conducted a new search in eight databases to include papers other than describing an SDM model, such as original research, opinion papers and reviews (strategy 2). RESULTS: From the 92 included papers, we identified 18 decision characteristics for which authors deemed SDM appropriate, including preference-sensitive, equipoise and decisions where patient commitment is needed in implementing the decision. SDM authors indicated limits to SDM, especially when there are immediate life-saving measures needed. We identified four decision characteristics on which authors of different papers disagreed on whether or not SDM is appropriate. CONCLUSION: The findings of this review show the broad range of decision characteristics for which authors deem SDM appropriate, the ambiguity of some, and potential limits of SDM. PRACTICE IMPLICATIONS: The findings can stimulate clinicians to (re)consider pursuing SDM in situations in which they did not before. Additionally, it can inform SDM campaigns and educational programs as it shows for which decision situations SDM might be more or less challenging to practice.

Long-Term Quality of Life of Vestibular Schwannoma Patients: A Longitudinal Analysis.

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 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.

Shared decision-making in advanced kidney disease: a scoping review.

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 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 m2. 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.

Development of an online patient decision aid for kidney failure treatment modality decisions.

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 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.