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To identify decision characteristics for which SDM authors deem SDM appropriate or not, and what arguments are used.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).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.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.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.

Purpose Shared decision making calls for clinician communication strategies that aim to foster choice awareness and to present treatment options neutrally, such as by not showing a preference. Evidence for the effectiveness of these communication strategies to enhance patient involvement in treatment decision making is lacking. We tested the effects of 2 strategies in an online randomized video-vignettes experiment. Methods We developed disease-specific video vignettes for rheumatic disease, cancer, and kidney disease showcasing a physician presenting 2 treatment options. We tested the strategies in a 2 (choice awareness communication present/absent) by 2 (physician preference communication present/absent) randomized between-subjects design. We asked patients and disease-naïve participants to view 1 video vignette while imagining being the patient and to report perceived room for involvement (primary outcome), understanding of treatment information, treatment preference, satisfaction with the consultation, and trust in the physician (secondary outcomes). Differences across experimental conditions were assessed using 2-way analyses of variance. Results A total of 324 patients and 360 disease-naïve respondents participated (mean age, 52 ± 14.7 y, 54% female, 56% lower educated, mean health literacy, 12 ± 2.1 on a 3–15 scale). The results showed that choice awareness communication had a positive (Mpresent = 5.2 v. Mabsent = 5.0, P = 0.042, η2partial = 0.006) and physician preference communication had no (Mpresent = 5.0 v. Mabsent = 5.1, P = 0.144, η2partial = 0.003) significant effect on perceived room for involvement in decision making. Physician preference communication steered patients toward preferring that treatment option (Mpresent = 4.7 v. Mabsent = 5.3, P = 0.006, η2partial = 0.011). The strategies had no significant effect on understanding, satisfaction, or trust. Conclusions This is the first experimental evidence for a small effect of fostering choice awareness and no effect of physician preference on perceived room to participate in decision making. Physician preference steered patients toward preferring that option.

Background Patient decision aids should help people make evidence-informed decisions aligned with their values. There is limited guidance about how to achieve such alignment. Purpose To describe the range of values clarification methods available to patient decision aid developers, synthesize evidence regarding their relative merits, and foster collection of evidence by offering researchers a proposed set of outcomes to report when evaluating the effects of values clarification methods. Data Sources MEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, and CINAHL. Study Selection We included articles that described randomized trials of 1 or more explicit values clarification methods. From 30,648 records screened, we identified 33 articles describing trials of 43 values clarification methods. Data Extraction Two independent reviewers extracted details about each values clarification method and its evaluation. Data Synthesis Compared to control conditions or to implicit values clarification methods, explicit values clarification methods decreased the frequency of values-incongruent choices (risk difference, –0.04; 95% confidence interval [CI], –0.06 to –0.02; P < 0.001) and decisional conflict (standardized mean difference, –0.20; 95% CI, –0.29 to –0.11; P < 0.001). Multicriteria decision analysis led to more values-congruent decisions than other values clarification methods (χ2 = 9.25, P = 0.01). There were no differences between different values clarification methods regarding decisional conflict (χ2 = 6.08, P = 0.05). Limitations Some meta-analyses had high heterogeneity. We grouped values clarification methods into broad categories. Conclusions Current evidence suggests patient decision aids should include an explicit values clarification method. Developers may wish to specifically consider multicriteria decision analysis. Future evaluations of values clarification methods should report their effects on decisional conflict, decisions made, values congruence, and decisional regret.

Objectives: The aim of this study was to identify and prioritize aspects essential for decision making in patients with diffuse cutaneous systemic sclerosis (dcSSc) and to gain insight into information preferences of treatment options which could guide development of a leaflet for patients. Methods: A three-round Delphi study was conducted with a panel of patients with dcSSc. The questionnaire was based on a systematic literature search regarding benefits and harms of four main treatment options in dcSSc: methotrexate, mycophenolate mofetil, cyclophosphamide pulses and stem cell transplantation. Patients were asked to identify information that is essential for making a treatment decision. After the third round, a live, online discussion was held in order to reach consensus on these items and to discuss the content and design of the leaflet. Consensus was defined as ⩾75% agreement among panel members. Results: Of the 36 patients invited, 78% (n = 28) participated in one or more rounds, 67% (n = 24) completed the first, 69% (n = 25) the second and 75% (n = 27) the third round. In the last round, median age of participants was 51 years (interquartile range, 18) and median disease duration 4 years (interquartile range, 5); 52% were female. Patients had been treated with mycophenolate mofetil (67%), methotrexate (44%), cyclophosphamide (41%), autologous stem cell transplantation (26%), rituximab (4%) or were treatment-naïve (7%). Eight patients joined the live panel discussion. The panel reached consensus on seven benefits (prolonged progression-free survival, improved quality of life, improved daily functioning, improved pulmonary function, improved skin thickness, improved mobility and reduced fatigue) and four harms (treatment-related mortality, infections, cardiac damage, increased risk of cancer) as essential information for decision making. Also a design of a leaflet was made. Conclusion: This study identified information about treatment options in dcSSc that should be addressed with patients. Our results can be used to develop effective patient information.

Contains fulltext : 287795.pdf (Publisher’s version ) (Open Access) OBJECTIVE: The objective of this study is to study (1) the relationship between patient-reported symptom burden and information needs in hospital-based palliative care and (2) differences in patient-reported needs during the disease trajectory. METHODS: Observational study: patient-reported symptom burden and information needs were collected via a conversation guide comprising assessment scales for 12 symptoms (0-10), the question which symptom has priority to be solved and a question prompt list on 75 palliative care-related items (35 topics, 40 questions). Non-parametric tests assessed associations. RESULTS: Conversation guides were used by 266 patients. Median age was 65 years (IQ-range, 57-72), 49% were male and 96% had cancer. Patients reported highest burden for Fatigue (median = 7) and Loss of appetite (median = 6) and prioritised Pain (26%), Fatigue (9%) and Shortness of breath (9%). Patients wanted information about 1-38 (median = 14) items, mostly Fatigue (68%), Possibilities to manage future symptoms (68%) and Possible future symptoms (67%). Patients also wanted information about symptoms for which they reported low burden. Patients in the symptom-directed phase needed more information about hospice care. CONCLUSION: Symptom burden and information needs are related. Patients often also want information about non-prioritised symptoms and other palliative care domains. Tailored information-provision includes inviting patients to also discuss topics they did not consider themselves.

ObjectivesTailoring medical information to cancer patients’ needs is recommended, but there is little guidance on how to tailor, and limited research exists about its effects. Tailoring to the amount of preferred information may be easily implementable in clinic and is tested here.MethodsA video-vignette experiment was used to systematically vary video patients’ information preferences (limited/extensive) and amount of provided information (additional/no additional). N = 253 cancer patients/survivors evaluated these video-recorded consultations, serving as analogue patients (APs), and completed outcome measures.ResultsTailoring information to video patients’ preferences had no effect on APs’ evaluation of the consultation (satisfaction, trust). Yet, there was a main effect of APs’ own information preferences: Those preferring extensive information recalled (MΔ = 5.8%) and recognized (MΔ = 3.5%) more information than those preferring limited information. Moreover, information provision mattered among APs who preferred limited information: They recognized even less if provided with extensive information.ConclusionsTailoring to the amount of video patient’s information preferences did not affect APs’ evaluation of the consultation (satisfaction, trust), while APs’ personal information preferences determined their recall and recognition of medical information.Practice implicationsInformation preferences should be assessed and tailored to in clinical practice. Overwhelming patients/survivors, who prefer limited information, should be prevented.

Objective: To assess the numerical probabilities that individuals associate with frequently-used verbal labels relating to treatment outcomes and their association with medical context, age, gender, educational level, health literacy, and numeracy.Methods: Verbal labels (N = 11) were extracted from N = 90 audiotaped decision encounters in oncology. Three hundred Dutch adults, as proxies for newly-diagnosed cancer patients, assigned numerical probabilities to the labels in the context of cancer recurrence or nausea, and completed questions on their socio-demographic characteristics, health literacy and numeracy.Results: We found considerable variation in how individuals interpreted the verbal labels. Participants' probability estimates of verbal labels was lower in the context of (the more serious) cancer recurrence compared to (less serious) nausea. Lower numerate participants differentiated less between labels. There was no association between participants' estimates and age, gender, educational level or health literacy.Conclusion: There is considerable variation in how individuals interpret verbal labels frequently-used in decision encounters. Individuals seem to take base rates and severity of outcomes into account. Verbal labels may be less helpful to lower numerate individuals.Practice implications: To minimize misinterpretation and to improve patient-clinician decision making about health and care, we recommend to avoid the use of verbal labels only. (C) 2019 Elsevier B.V. All rights reserved.

The Video Engagement Scale (VES) is a quality indicator to assess engagement in experimental video-vignette studies, but its measurement properties warrant improvement. Data from previous studies were combined (N = 2676) and split into three subsamples for a stepped analytical approach. We tested construct validity, criterion validity, reliability, and measurement invariance. Confirmatory factor analysis (CFA) reiterated poor fit of the previously suggested subscales. An alternative 2-factor structure is presented, which was cross-validated and further shortened (VES-sf). Reliability of both subscales (Immersion, Emotional Impact) was very high (alpha > .86). Multi-group CFAs demonstrated partial and complete measurement invariance among male/female and differently educated participants respectively. Invariance between healthy versus ill participants was not established, but CFAs supported the VES-sf structure in both groups separately. To conclude, we provide the VES-sf with sound measurement properties and demonstrated the appropriateness of comparing certain subgroups. Overall, we recommend the VES-sf to assess engagement/ecological validity in video-vignette research.

The global pandemic caused by severe acute respiratory syndrome coronavirus 2 has upended surgical practice. In an effort to preserve resources, mitigate risk, and maintain health system capacity, nonurgent surgeries have been deferred in many jurisdictions, with urgent procedures facing increasing wait times and unpredictability given potential future surges. Shared decision making, a process that integrates patient values and preferences with the scientific expertise of clinicians, may be of particular benefit during these unprecedented times. Aligning patient choices with their values, reducing unnecessary health care use, and promoting consistency between providers are now more critical than ever before. We review important aspects of shared decision making and provide guidance for its perioperative application during the coronavirus disease 2019 pandemic.

Introduction: Patient preferences are often not discussed in treatment decisions in oncology. We introduced an online values clarification method (VCM) to help newly diagnosed rectal cancer patients participate in shared decision making about short-course preoperative radiotherapy. Material and Methods: We offered a link to the VCM to a subset of consecutive patients before the pretreatment consultation with the radiation oncologist. Consultations were audiotaped and coded for expressions of patient preferences. Patients were asked to complete pre- and post-consultation questionnaires. Questionnaires assessed values clarity, decision regret and presence and impact of fecal incontinence and sexual problems. Results: Of 135 patients who had their consultation audiotaped and completed questionnaires, 35 received and accessed the VCM-link. Patients in the VCM-group slightly more often expressed preferences during consultations. Questionnaire data showed that patients in the VCM-group did not differ in how clear their values were, but experienced lower regret and less impact of treatment harms at 6 months follow-up; differences were non-significant but in the same direction at 12 months. Discussion: This is the first study to assess the effect of an adaptive conjoint analysis-based VCM on actual patient-clinician communication, and long-term decision regret and impact of treatment harms. Being explicitly invited to think about treatment benefits and harms seems to help patients to live with treatment consequences.

Objective: To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.Methods: The PCA consists of education about SDM, a question prompt list, and values clarification methods. Study 1. A first veersion was presented to 13 patients, 8 relatives and 14 bereaved relatives in interviews. Study 2. A second version was used by 18 patients in a pilot study. Patients and oncologists were interviewed, patients were surveyed, and consultations were audio-recorded.Results: Respondents reported that the aid facilitated patient control over information, raised choice awareness and promoted elaboration. Risks were identified, most importantly that the aid might upset patients. Also, some respondents reported that the PCA did not, or would not support decision making because they felt sufficiently competent, did not perceive a role for themselves, or did not perceive that the decision required elaboration.Conclusions: Opinions on the usefulness of the PCA varied. It was challenging to raise awareness about the presence of a choice, and to find a balance between comprehensive information and sensitivity.Practice implications: A future study should demonstrate whether the PCA can improve SDM, and whether this effect is stronger when oncologists receive training. (C) 2018 Elsevier B.V. All rights reserved.

Objective Shared decision making integrates health care provider expertise with patient values and preferences. The MAPPIN’SDM is a recently developed measurement instrument that incorporates physician, patient, and observer perspectives during medical consultations. This review sought to critically appraise the development, sensibility, reliability, and validity of the MAPPIN’SDM and to determine in which settings it has been used. Methods This critical appraisal was performed through a targeted review of the literature. Articles outlining the development or measurement property assessment of the MAPPIN’SDM or that used the instrument for predictor or outcome purposes were identified. Results Thirteen studies were included. The MAPPIN’SDM was developed by both adapting and building on previous shared decision making measurement instruments, as well as through creation of novel items. Content validity, face validity, and item quality of the MAPPIN’SDM are adequate. Internal consistency ranged from 0.91 to 0.94 and agreement statistics from 0.41 to 0.92. The MAPPIN’SDM has been evaluated in several populations and settings, ranging from chronic disease to acute oncological settings. Limitations include high reading levels required for self-administered patient questionnaires and the small number of studies that have employed the instrument to date. Conclusion The MAPPIN’SDM generally shows adequate development, sensibility, reliability, and validity in preliminary testing and holds promise for shared decision making research integrating multiple perspectives. Further research is needed to develop its use in other patient populations and to assess patient understanding of complex item wording.

Learning from each otherTo begin, our partnership conversations started dis-entangling some fundamental assumptions, strengths, and limitations of communication theory and methods as understood by members from the Health Communication Division of ICA and to connect those strengths to EACH. From a practical perspective, ICA members are Communication scholars and students who most often work in departments of Communication or Media, within Colleges of Arts, Humanities, and Social Sciences. In contrast, while some EACHRelational benefits of the partnershipOverall, we think the partnership between EACH and ICA will be beneficial to members of both organizations. EACH is a global organization dedicated to exploring and improving the ways in which healthcare professionals, patients, and family members communicate with one another. And while EACH focuses on many of the health communication issues that people in ICA examine, including public health communication, patients’ experiences with illness, shared decision-making, personalized healthPartnering opportunities at conferencesMark your calendars and look for a call for a co-sponsored panel to be included at the annual ICA conference in Paris in May 2022. The panel will focus on making connections for research partnerships. Beyond that, look for ongoing future opportunities on both organizations’ websites and your inbox.Also, the ICA Health Communication Division has adopted EACH’s Pairing with Colleagues Mentoring Program and we hope this partnership will strengthen opportunities for graduate students and earlyOrganizational benefits of the partnershipAs mentioned, EACH has chosen to become an affiliate organization to ICA to leverage common interests, perspectives, and expertise in communication in healthcare. At this point, formalizing the relationship translates into panel presentations at annual meetings shared across the organizations. Yet, we are working on how this formal relationship can be institutionalized in additional ways such that members benefit from membership in both organizations. Moreover, we are in conversation about

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 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.

ObjectivesWe have developed two 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.MethodsPhysicians from seven Dutch hospitals recruited cancer patients, and completed the iSHAREphysician and SDM-Questionnaire–physician version. Their patients completed the: iSHAREpatient, 9-item SDM-Questionnaire, Decisional Conflict Scale, Combined Outcome Measure for Risk communication And treatment Decision making Effectiveness, and 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.ResultsIn 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.ConclusionsThe iSHARE questionnaires show high scores, have good construct validity, substantial test-retest agreement, and moderate inter-rater agreement.Practice implicationsResults from the iSHARE questionnaires can inform both physician- and patient-directed efforts to improve SDM in clinical practice.

Importance Shared decision-making is a partnership between physicians and patients whereby patient values and preferences are incorporated with the best medical evidence. Shared decision-making may reduce decisional conflict, improve value-choice congruence, and increase patient involvement. Despite potential benefit in many key areas of otolaryngology-head and neck surgery, both clinical and research focuses on shared decision-making are scarce. Head and neck surgical oncology is of particular interest owing to the frequency by which preference-sensitive decisions must be made. Information used in this review was obtained between January 1 and February 1, 2020. Observations Various conceptual models have been developed in an attempt to define the concept of shared decision-making. More than 40 instruments have endeavored to measure the construct of shared decision-making. However, in head and neck surgery, few studies to date have explicitly done so. Situations of clinical equipoise, such as in the management of indeterminate thyroid nodules and in the treatment of laryngeal cancer, are frequent. In contrast, value-option incongruence may occur when patient values do not align with the most oncologically sound treatment choice, such as when the resection and reconstruction of oral cancer may leave patients with significant sequelae. Several patient decision aids have been developed to improve shared decision-making in specific clinical scenarios, for example, in considering total laryngectomy or primary chemoradiotherapy. Conclusions and Relevance Despite its potential benefit, there is a dearth of research and clinical applications of shared decision-making in head and neck surgery. Shared decision-making represents an area of substantial need in this regard, and additional efforts should be put forth.This narrative review discusses the concepts and development of tools to improve shared decision-making among patients who are undergoing head and neck surgery and surgeons.

Objectives: To gain insight into the experiences of patients with diffuse cutaneous systemic sclerosis during and after autologous hematopoietic stem cell transplantation. Methods: Semi-structured interviews were conducted with patients who underwent hematopoietic stem cell transplantation in four university hospitals in the Netherlands. Interviews were transcribed verbatim and thematically analyzed. Results: Nine male and seven female patients were interviewed, median age 47 years (range: 27–68). Patients mentioned their life was severely disrupted before hematopoietic stem cell transplantation and remained unsettled a long time after treatment. Uncertainty because of disease progression, loss of control over health and the sense of time and fear of treatment-related adverse events were common during hospitalization. After hematopoietic stem cell transplantation, patients experienced more physical limitations than they had expected, and recovery took longer and was mentally taxing. Going back to work and finding a new balance in personal relations and social life was complicated. Patients described various strategies to deal with challenges. Family and friends provided essential support, although many experienced a dwindling social circle. Most patients also appreciated peer support. All patients were satisfied with the low threshold for contact with physicians and nurses during hospitalization. However, aftercare focused on medical aspects rather than on psychological well-being and social issues. Moreover, patients would have preferred to be better prepared on what to expect after discharge, and lacked information about self-management, prognosis, optimal recovery, work, sexuality, and family planning. Conclusion: Hematopoietic stem cell transplantation has a major physical and psychological impact on patients with diffuse cutaneous systemic sclerosis. The course of recovery after this intensive therapy was unexpectedly long for some patients and offer of support was far less pro-active post-HSCT compared to pre-HSCT and during HSCT.

Over the course of March 2020, the everyday life of most people changed from normal to extraordinary around the globe. By the beginning of March, there had been serious outbreaks of COVID-19 in a limited number of countries, such as China, South Korea, Iran and Italy, while many others experienced a lull before the storm. People in unaffected countries understood that the Corona SARS CoV-2 virus might reach their shores at one point; the question was when and how hard it would hit. By the end of March, many governments had ordered drastic measures. Schools and university campuses were shut down. Shops, restaurants and companies were closed. People in many different jobs were asked to work from home, and many were in quarantines.

Objective To construct a model of shared decision making (SDM) about cancer treatment by conducting an extensive consultation of stakeholders, informed by the literature. Methods We interviewed 76 stakeholders: cancer patients, potential future patients, oncologists, nurses, and SDM-researchers. We asked, "If I say 'Doctors and patients making decisions together about cancer treatment,' what does this make you think about?" Ideas were further solicited by presenting 19 cards each describing a possible SDM element. Interviews were inductively coded and analysed, and the emerging themes were integrated into a model. Results The model that was based on participants' views assigns specific roles in SDM to both oncologists and patients. Oncologists determine possible treatments, emphasise the importance of patients' opinion, explain treatment options, get to know patients, guide patients, and provide treatment recommendations. Patients ask questions, express thoughts and feelings, consider options, offer opinions, and decide or delegate decisions to oncologists. Outside consultations, patients search for information, prepare questions, and consider options. Conclusions Next to oncologists' role, cancer patients also have a clear role in SDM about cancer treatment, during and outside consultations. Patients should receive the support they need to fulfil this requirement.

Background Pancreatic cancer has a poor prognosis. Patients might be better able to cope with their disease when the information is discussed that they consider most important. We investigated what questions pancreatic patients consider most important to address in the first weeks after diagnosis. Methods We built a survey listing 84 questions and for each asked how important (range, 1–7) individuals who had received a certain or likely diagnosis of pancreatic cancer considered it that the question was addressed soon after diagnosis; patients who completed the survey 1 year or more after diagnosis were excluded. Mean perceived importance scores were used to rank order the questions in terms of importance. Results Forty-seven pancreatic cancer patients participated. The participants considered receiving an answer to a median of 53 (range, 21–83) questions as important (score = 6) or very important (score = 7). The number was not significantly related to gender, age, education, or time since diagnosis. For 42/84 questions, average score was ≥6.0. Topics considered most important included diagnosis, likelihood of cure, treatment options, harms and procedures, prognosis if the disease were left untreated, and quality of life. For 67/84 questions, ≥1 participants indicated that answering the question should be avoided (Md = 1 participant, range, 1–5) and for 77/84 questions that it was not applicable (Md = 3.5 participants, range, 1–30). Conclusions Pancreatic cancer patients consider a wide range of questions important to address after diagnosis, including those on sensitive topics. Doctors need to carefully dose information provision to avoid overloading patients. The findings can help to guide doctors and other information resources to provide relevant information to pancreatic cancer patients.

ObjectivesPatient recall of medical information is usually poor. Healthcare providers can employ affect-oriented (i.e., showing care) or cognition-oriented communication styles (i.e., structuring information) to enhance recall, but research evidence is limited especially among clinical and/or older patient populations. This video-vignette study manipulated provider caring and information structuring to examine effects on recall and trust among cancer patients/survivors.MethodsIn an online survey, 148 participants (Mage = 62) were randomized to one of four video conditions in a two (standard communication vs. enhanced caring) by two (standard vs. enhanced structuring) design, and completed measures of active recall, recognition, and trust.ResultsIncreased caring or structuring did not enhance active recall or recognition, instead both were higher among younger, female, or highly educated participants. The caring condition induced higher perceived trust in the provider within the whole sample, but trust was significantly correlated with decreased recall (r = −.268) among younger participants.ConclusionsProvider caring can strengthen the patient-provider relationship by enhancing trust. Yet, increased trust may impair recall among younger patients. Structuring treatment information did not enhance recall and recognition, but additional research is needed.Practice implicationsProviders may use additional ways of structuring/organizing information to help enhance recall (e.g., written information).

Background. Adjuvant systemic treatment for early stage breast cancer significantly reduces the risk of mortality but is associated with side effects, reducing patients’ quality of life. Decisions about adjuvant treatment are preference sensitive and are thus ideally suited to a shared decision making (SDM) approach. Whether and how SDM affects patients’ trust in their oncologist is currently unknown. We investigated the association between patients’ trust in their oncologist and 1) observed level of SDM in the consultation, 2) congruence between patients’ preferred and perceived level of participation, and 3) patient and oncologist characteristics. Methods. Decision consultations ( n = 101) between breast cancer patients and their medical oncologist were audio-recorded and transcribed verbatim. Patients’ trust in their oncologist was measured using the Trust in Oncologist Scale (TiOS). The observed level of SDM was scored using the 12-item Observing Patient Involvement In Decision Making scale (OPTION-12), preferred level of participation with the Control Preferences Scale, and perceived level of participation with an open question in telephonic interviews. Results. The average TiOS score was high overall (mean [SD] = 4.1 [.56]; range, 2.6–5.0). Low levels of SDM were observed (mean [SD] = 16 [11.6]; range, 2–56). Neither observed nor perceived level of participation in SDM was associated with trust. Patients’ preferred and perceived role in decision making was incongruent in almost 50% of treatment decisions. Congruence was not related to trust. A larger tumor size (β = 4.5, P = 0.03) and the use of a risk prediction model during the consultation (β = 4.1, P = 0.04) were associated with stronger trust. Conclusion. Patients reported strong trust in their oncologist. While low levels of SDM were observed, SDM was not associated with trust. These findings suggest it may not be necessary to worry about negative consequences for trust of using SDM or risk prediction models in oncological consultations. Considering the increased emphasis on implementing SDM, it is important to further explore how SDM affects trust in clinical practice.

Background Patients and family often do not know what to expect of an advance care planning (ACP) consultation. Question prompt lists (QPL) help them to gain insight into and express their wishes and questions. We developed the ‘Leiden Guide for Palliative care’ (LGP), combining an adapted Edmonton Symptom Assessment Scale and a translated QPL on palliative care,1 to hand out before the ACP consultation with palliative care specialists. The goals of this study were to evaluate personal experiences of patients and family with the LGP, and to further develop the LGP. Methods In this qualitative study semi-structured interviews with six patients and seven family members were conducted. Manual coding and thematic analysis were done by two researchers. Results Three main themes for optimal use of the LGP were identified: 1. Prerequisites: early in disease trajectory; adequate introduction by the healthcare professional (HCP); positive first impression. 2. Benefits: provides complete overview of ACP topics and relevant questions; facilitates end of life discussions, also between family members. 3. Practical use: preferably the LGP is reviewed with family 1–2 days before the consultation. With detailed suggestions on content and format we constructed an improved LGP. Conclusion Patients and family consider the LGP as helpful and useful in preparation and during ACP consultations with palliative care specialists, provided that the prerequisites are met. The usefulness of the LGP in ACP discussions with generalist HCPs and in different settings is subject of further study. Reference Clayton J, et al. Br J Cancer 2003.

Objectives To examine the treatment decision-making process of patients with dcSSc in the context of haematopoietic stem cell transplantation (HSCT). Methods A qualitative semi-structured interview study was done in patients before or after HSCT, or patients who chose another treatment than HSCT. Thematic analysis was used. Shared decision-making (SDM) was assessed with the 9-item Shared Decision Making Questionnaire (SDM-Q-9). Results Twenty-five patients [16 male/nine female, median age 47 (range 27–68) years] were interviewed: five pre-HSCT, 16 post-HSCT and four following other treatment. Whereas the SDM-Q-9 showed the decision-making process was perceived as shared [median score 81/100 (range 49–100)], we learned from the interviews that the decision was predominantly made by the rheumatologist, and patients were often steered towards a treatment option. Strong guidance of the rheumatologist was appreciated because of a lack of accessible, reliable and SSc-specific information, due to the approach of the decision-making process of the rheumatologist, the large consequence of the decision and the trust in their doctor. Expectations of outcomes and risks also differed between patients. Furthermore, more than half of patients felt they had no choice but to go for HSCT, due to rapid deterioration of health and the perception of HSCT as ‘the holy grail’. Conclusion This is the first study that provides insight into the decision-making process in dcSSc. This process is negatively impacted by a lack of disease-specific education about treatment options. Additionally, we recommend exploring patients’ preferences and understanding of the illness to optimally guide decision-making and to provide tailor-made information.

Background Autologous hematopoietic stem cell transplantation (HSCT) can induce long-term remission in patients with diffuse cutaneous systemic sclerosis (dcSSc). Nevertheless, it is an intensive treatment with risk of treatment-related mortality and associated adverse events requiring long-term hospital admission. Little is known about the psychosocial impact of HSCT on patients with dcSSc. Additionally, post-discharge care is currently not standardized. Objectives To gain more insight in the experiences of patients during and after HSCT and to identify unmet needs in current care. Methods Semi-structured interviews were conducted with dcSSc patients that underwent HSCT in four academic hospitals in the Netherlands. Interviews were transcribed verbatim and analyzed with NVIVO12. Results Eight patients were interviewed (5 males and 3 females, mean age 48 years (SD 10), mean disease duration 4.6 years (SD 1.9), mean time since HSCT 3.2 years (SD 2.4). At inclusion mean SHAQ was 1.3 (SD 1.1) and mean EQ5D-5L 0.86 (SD 0.21). While patients were satisfied with the frequent, low-threshold contacts with physicians and nurses, the decision-making process followed by HSCT and recovery was mentally taxing. Although patient education was experienced as extensive pre-treatment, participants reported they only felt the real impact of it during therapy. Patients felt anxious throughout the hospital stay and they could not recall most events from that period. Feelings of losing control over health and over time were frequently described. Support of family and friends was important during treatment. Apart from the practical aid, they provided emotional support, helping to cope with emotions and to find purpose. Furthermore, a specialized nurse involved in psychosocial support and care management was highly valued. Still, participants felt lonely and misunderstood due to invisible disabilities, such as fatigue and pain. After HSCT, patients experienced more physical limitations than they expected, i.e. low energy levels and limited hand function. They worried about contracting infections and relapse risk. Professional rehabilitation was often hindered. There were unmet needs. Patients preferred to be better informed about what to expect after admission. Structured and written instructions should include themes such as self-management, practical tips and prognosis of recovery. Participants would advise peers to keep a diary and even take photos during HSCT and hospital stay, in order to help recollect and assimilate past events. Peer-support was recommended by most patients. Conclusion HSCT had a large impact, both physical and emotional. We identified unmet needs regarding patient education on rehabilitation and psychosocial support in the period following HSCT. Disclosure of interests Carolijn de Bresser: None declared, Julia Spierings Grant/research support from: Boehringer ingelheim, Femke van Rhijn-Brouwer: None declared, arwen Pieterse: None declared, Madelon Vonk Grant/research support from: Madelon Vonk has received unrestricted research funds from actelion and therabel, Consultant for: Madelon Vonk was a consultant for actelion, Boehringer-Ingelheim, Speakers bureau: actelion, Boehringer-Ingelheim, Roche, alexandre Voskuyl: None declared, Jeska de Vries-Bouwstra: None declared, Marijke Kars: None declared, Jacob M. van Laar Grant/research support from: Genentech, Consultant for: F. Hoffmann-La Roche

Background:Diffuse cutaneous systemic sclerosis (dcSSc) has a high impact on quality of life and is associated with increased mortality. Several treatment options are available in dcSSc, including immunosuppressives, chemotherapy and hematopoietic stem cell transplantation. Shared decision making is key in choosing the appropriate treatment strategy. In earlier studies however, patients reported that the lack of accessible and reliable patient information about treatment options complicates decision making. In order to provide information that meets the needs of patients and addresses relevant benefits and harms, more insight in the preferences of patients is needed.Objectives:The aim of this study was to identify and prioritize aspects that should be addressed when informing patients with dcSSc about treatment options, from a patient’s perspective.Methods:A three-round Delphi study was conducted with a panel of patients with dcSSc. The first questionnaire was based on a systematic literature search regarding benefits and harms of the four main treatments in dcSSc: methotrexate, mycophenolate mofetil, cyclophosphamide, and stem cell transplantation. In the first round, patients were asked to indicate which information on the benefits and harms is essential for making a treatment decision; they could also add new items. In the second and third rounds, patients were asked to prioritize the items. After the third round, a live, online panel discussion was held in order to reach consensus. Consensus was defined as ≥75% agreement among panel members.Results:Of the 36 patients invited, 67% (n=24) completed the first, 69% (n=25) the second and 75% (n=27) the third round. In the third round, median age of participants was 51 years (IQR 18), median disease duration was 4 years (IQR 5), 52% was female. Most patients had completed either an intermediate education level (59%) or high level of education (30%). Patients were or had been treated with mycophenolate mofetil (67%), methotrexate (44%), cyclophosphamide (41%), autologous stem cell transplantation (26%), rituximab (4%). Seven percent of patients were treatment-naïve. After the third round, eight patients joined the online panel discussion to reach final consensus. The panel reached consensus on seven benefits (prolonged progression-free survival, improved quality of life, improved daily functioning, improved pulmonary function, improved skin thickness, improved mobility and reduced fatigue) and four adverse events (treatment-related mortality, viral infections, cardiac damage, increased risk of cancer) as key themes for the decision making process (Table 1).Conclusion:This study identified essential aspects of the four main treatment options for dcSSc. Our results can be used to develop effective patient information.Table 1.Agreement on benefits and harms that should be addressedBenefitsAgreementHarmsAgreementImproved pulmonary function100%Viral infections88%Improved skin thickness100%Cardiac damage88%Improved mobility100%Increased risk of cancer88%Prolonged progression-free survival95%*Treatment-related mortality79%*Improved quality of life77%*Flare or relapse of disease63%Improved daily functioning77%*Temporary increase in fatigue25%Reduced fatigue75%Temporary negative impact on social activities25%Improved hand function25%Nausea25%Improved mood25%Other autoimmune disease13%Improved cardiac function13%Hormonal imbalance13%Improved oesophageal function7%Concentration difficulty13%Diarrhea13%Erectile dysfunction13%Depression13%Infertility13%Hair loss13%*Items on which consensus was reached in round 3Disclosure of Interests:None declared

Objectives To assess the occurrence of questions that foster shared decision making, in particular cancer patients' understanding of treatment decisions and oncologists' understanding of patients' priorities, during consultations in which preference-sensitive decisions are discussed. Specifically, (a) regarding patient understanding, do oncologists ask about patients' preexisting knowledge, information preferences, and understanding and do patients and companions ask about the disease and treatment, and (b) regarding patient priorities, do oncologists ask about patients' treatment- and decision-related preferences and do patients and companions ask about the decision? Methods Audiotaped pretreatment consultations of 100 cancer patients with 32 oncologists about (neo)adjuvant treatment were coded and analyzed to document question type, topic, and initiative. Results The oncologists ascertained prior knowledge in 50 patients, asked 24 patients about preferred (probability) information, and invited questions from 56 patients. The oncologists asked 32 patients about treatment preferences and/or for consent. Respectively, one-third and one-fifth of patients and companions asked about treatment benefits compared with three-quarters of them who asked about treatment harms and/or procedures. Conclusions It would be helpful to patients if oncologists more often assessed patients' existing knowledge to tailor their information provision. Also, patients could receive treatment recommendations that better fit their personal situation if oncologists collected information on patients' views about treatments. Moreover, by educating patients to ask about treatment alternatives, benefits, and harms, patients may gain a better understanding of the choice they have.

ObjectivesTo (1) provide an up-to-date overview of shared decision making (SDM)-models, (2) give insight in the prominence of components present in SDM-models, (3) describe who is identified as responsible within the components (patient, healthcare professional, both, none), (4) show the occurrence of SDM-components over time, and (5) present an SDM-map to identify SDM-components seen as key, per healthcare setting.DesignSystematic review.Eligibility criteriaPeer-reviewed articles in English presenting a new or adapted model of SDM.Information sourcesAcademic Search Premier, Cochrane, Embase, Emcare, PsycINFO, PubMed, and Web of Science were systematically searched for articles published up to and including September 2, 2019.ResultsForty articles were included, each describing a unique SDM-model. Twelve models were generic, the others were specific to a healthcare setting. Fourteen were based on empirical data, 26 primarily on analytical thinking. Fifty-three different elements were identified and clustered into 24 components. Overall, Describe treatment options was the most prominent component across models. Components present in >50% of models were: Make the decision (75%), Patient preferences (65%), Tailor information (65%), Deliberate (58%), Create choice awareness (55%), and Learn about the patient (53%). In the majority of the models (27/40), both healthcare professional and patient were identified as actors. Over time, Describe treatment options and Make the decision are the two components which are present in most models in any time period. Create choice awareness stood out for being present in a markedly larger proportion of models over time.ConclusionsThis review provides an up-to-date overview of SDM-models, showing that SDM-models quite consistently share some components but that a unified view on what SDM is, is still lacking. Clarity about what SDM constitutes is essential though for implementation, assessment, and research purposes. A map is offered to identify SDM-components seen as key.Trial registrationPROSPERO registration CRD42015019740

ObjectiveMany treatment decisions are preference-sensitive and call for shared decision-making, notably when benefits are limited or uncertain, and harms impact quality of life. We explored if clinical practice guidelines (CPGs) acknowledge preference-sensitive decisions in how they motivate and phrase their recommendations.DesignWe performed a qualitative analysis of the content of CPGs and verified the results in semistructured interviews with CPG panel members.SettingDutch oncology CPGs issued in 2010 or later, concerning primary treatment with curative intent.Participants14 CPG panel members.Main outcomesFor treatment recommendations from six CPG modules, two researchers extracted the following: strength of recommendation in terms of the Grading of Recommendations Assessment, Development and Evaluation and its consistency with the CPG text; completeness of presentation of benefits and harms; incorporation of patient preferences; statements on the panel’s benefits–harm trade-off underlying recommendation; and advice on patient involvement in decision-making.ResultsWe identified 32 recommendations, 18 were acknowledged preference-sensitive decisions. Three of 14 strong recommendations should have been weak based on the module text. The reporting of benefits and harms, and their probabilities, was sufficiently complete and clear to inform the strength of the recommendation in one of the six modules only. Numerical probabilities were seldom presented. None of the modules presented information on patient preferences. CPG panel’s preferences were not made explicit, but appeared to have impacted 15 of 32 recommendations. Advice to involve patients and their preferences in decision-making was given for 20 recommendations (14 weak). Interviewees confirmed these findings. Explanations for lack of information were, for example, that clinicians know the information and that CPGs must be short. Explanations for trade-offs made were cultural-historical preferences, compliance with daily care, presumed role of CPGs and lack of time.ConclusionsThe motivation and phrasing of CPG recommendations do not stimulate choice awareness and a neutral presentation of options, thus hindering shared decision-making.