The role of time in involving patients with cancer in treatment decision making: A scoping review.

BACKGROUND: Time is often perceived as a barrier to shared decision making in cancer care. It remains unclear how time functions as a barrier and how it could be most effectively utilized. OBJECTIVE: This scoping review aimed to describe the role of time in patient involvement, and identify strategies to overcome time-related barriers. METHODS: Seven databases were searched for any publications on patient involvement in cancer treatment decisions, focusing on how time is used to involve patients, the association between time and patient involvement, and/or strategies to overcome time-related barriers. Reviewers worked independently and in duplicate to select publications and extract data. One coder thematically analyzed data, a second coder checked these analyses. RESULTS: The analysis of 26 eligible publications revealed four themes. Time was a resource 1) to process the diagnosis, 2) to obtain/process/consider information, 3) for patients and clinicians to spend together, and 4) for patient involvement in making decisions. DISCUSSION: Time is a resource throughout the treatment decision-making process, and generic strategies have been proposed to overcome time constraints. PRACTICE VALUE: Clinicians could co-create decision-making timelines with patients, spread decisions across several consultations, share written information with patients, and support healthcare redesigns that allocate the necessary time.

Patient Characteristics and the Extent to Which Clinicians Involve Patients in Decision Making: Secondary Analyses of Pooled Data.

BACKGROUND: The occurrence of shared decision making (SDM) in daily practice remains limited. Various patient characteristics have been suggested to potentially influence the extent to which clinicians involve patients in SDM. OBJECTIVE: To assess associations between patient characteristics and the extent to which clinicians involve patients in SDM. METHODS: We conducted a secondary analysis of data pooled from 10 studies comparing the care of adult patients with (intervention) or without (control) a within-encounter SDM conversation tool. We included studies with audio(-visual) recordings of clinical encounters in which decisions about starting or reconsidering treatment were discussed. MAIN MEASURES: In the original studies, the Observing Patient Involvement in Decision Making 12-items (OPTION12 item) scale was used to code the extent to which clinicians involved patients in SDM in clinical encounters. We conducted multivariable analyses with patient characteristics (age, gender, race, education, marital status, number of daily medications, general health status, health literacy) as independent variables and OPTION12 as a dependent variable. RESULTS: We included data from 1,614 patients. The between-arm difference in OPTION12 scores was 7.7 of 100 points (P < 0.001). We found no association between any patient characteristics and the OPTION12 score except for education level (p = 0.030), an association that was very small (2.8 points between the least and most educated), contributed mostly by, and only significant in, control arms (6.5 points). Subanalyses of a stroke prevention trial showed a positive association between age and OPTION12 score (P = 0.033). CONCLUSIONS: Most characteristics showed no association with the extent to which clinicians involved patients in SDM. Without an SDM conversation tool, clinicians devoted more efforts to involve patients with higher education, a difference not observed when the tool was used. HIGHLIGHTS: Most sociodemographic patient characteristics show no association with the extent to which clinicians involve patients in shared decision making.Clinicians devoted less effort to involve patients with lower education, a difference that was not observed when a shared decision-making conversation tool was used.SDM conversation tools can be useful for clinicians to better involve patients and ensure patients get involved equally regardless of educational background.

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.

Co-creation of a health literate-sensitive training and conversation aid to support shared decision-making in maternity care.

Background: Maternity care increasingly aims to achieve Shared Decision-making (SDM), yet seemingly not to the benefit of clients with low health literacy (HL). We developed an SDM training for healthcare professionals (HCPs) and a conversation aid to support HL-sensitive SDM in maternity care. Methods: The training and conversation aid were based on previous needs assessments and expert consultation, and were developed in co-creation with clients (n = 15) and HCPs (n = 7). Usability, acceptability and comprehension of the conversation aid were tested among new clients (n = 14) and HCPs (n = 6). Acceptability of the training was tested among midwifery students (n = 5). Results: In the co-creation sessions, clients reported to expect that their midwife becomes acquainted with their general values, priorities and daily context. Clients also emphasized wanting to be supported in their preferred decisional role. User test interviews showed that clients and HCPs were positive towards using the conversation aid, but also apprehensive about the time it required. The user test of the training showed that more attention was needed for recognizing and adapting information provision to clients' HL level. Conclusion and innovation: The newly developed conversation aid and training have potential to support HCPs and clients in HL-sensitive SDM.

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.

Shared decision-making performance of general practice residents: an observational study combining observer, resident, and patient perspectives.

BACKGROUND: Shared decision making (SDM) is considered fundamental to person-centred care. However, applying SDM may be a challenge for residents in general practice, since it is a complex competence that requires the integration of knowledge and skills from several competency domains. OBJECTIVE: To support learning of SDM during medical residency, we aimed to gain insight in Dutch residents' observed and perceived SDM performance in general practice. METHODS: We evaluated residents' SDM performance from an observer, resident, and patient perspective. Consultations of first- and third-year residents were recorded. Trained observers used the validated Observing Patient Involvement (OPTION5) scale to assess observed SDM performance of residents in 98 actual recorded consultations. Perceived SDM performance was evaluated by residents and patients completing validated SDM questionnaires, supplemented with questions about (the context of) the consultation and perceived relevance of SDM immediately after the consultation. The data were analysed using descriptive statistics (mean, SD, minimums, and maximums) and explorative bivariate analyses. RESULTS: The residents' observed mean SDM performance was 19.1 (range, 0-100, SD = 10.9), mean resident self-reported SDM performance was 56.9 (range, 0-100, SD = 18.5), and mean patient-reported SDM performance was 73.3 (range, 0-100, SD = 26.8). We found a significant and positive correlation between observed SDM performance and residents' perceived relevance of SDM for the consultation (t = 4.571, P ≤ 0.001) and the duration of the consultation (r = 0.390, P ≤ 0.001). CONCLUSIONS: This study showed that there is room for increasing awareness of the potential incongruence between observed and perceived SDM performance during medical residency, in order to facilitate the implementation of SDM in clinical practice.

THE PROBLEM: Shared decision making is an important process in which healthcare professional and patient work together to reach a decision on how to solve a health problem. This decision should include patients' needs and what matters most to them. We investigated if consultations between general practitioners in training (i.e. residents) and their patients demonstrate shared decision making. The research methods: We asked the residents and patients to respond to questions on their experience of shared decision making right after the consultation. We recorded 98 consultations of residents with their patients. Two researchers rated to what extent residents demonstrated shared decision-making behaviours during these consultations. THE RESULTS: The patients reported more shared decision making than the residents (patients: 73 versus residents: 57 on a 0­100 scale). The researchers observed low levels of SDM during the consultations (19 on a 0­100 scale). Our conclusion: Residents should be aware that shared decision making does not yet frequently occur in practice. To improve the extent to which residents share decisions with their patients in general practice, residents should learn why, when, and how to involve patients in decision making during consultations.

Shared decision-making with older adults with cancer: Adaptation of a model through literature review and expert opinion.

OBJECTIVE: To provide a literature overview of characteristics of Shared Decision Making (SDM) with specific importance to the older adult population with cancer and to tailor an existing model of SDM in patients with cancer to the needs of older adults. METHODS: A systematic search of several databases was conducted. Eligible studies described factors influencing SDM concerning cancer treatment with adults aged 65 years or above, with any type of cancer. We included qualitative or mixed-methods studies. Themes were identified and discussed in an expert panel, including a patient-representative, until consensus was reached on an adjusted model. RESULTS: Overall 29 studies were included and nine themes were identified from the literature. The themes related to the importance of goal setting, need for tailored information provision, the role of significant others, uncertainty of evidence, the importance of time during and outside of consultations, the possible ill-informed preconceptions that health care professionals (HCPs) might have about older adults and the specific competencies they need to engage in the SDM process with older adults. No new themes emerged from discussion with expert panel. This study presents a visual model of SDM with older patients with cancer based on the identified themes. CONCLUSIONS: Our model shows key elements that are specific to SDM with older adults. Further research needs to focus on how to educate HCPs on the competencies needed to engage in SDM with older patients, and how to implement the model into everyday practice.

Choosing conservative care in advanced chronic kidney disease: a scoping review of patients' perspectives.

BACKGROUND: Conservative care (CC) is a viable treatment option for some patients with kidney failure. Choosing between dialysis and CC can be a complex decision in which involvement of patients is desirable. Gaining insight into the experiences and preferences of patients regarding this decision-making process is an important initial step to improve care. We aimed to identify what is known about the perspective of patients regarding decision-making when considering CC. METHODS: PubMed, EMBASE and Cochrane databases were systematically searched on 23 February 2023 for qualitative and quantitative studies on patient-reported experiences on decision-making about CC. Data were analysed thematically. RESULTS: Twenty articles were included. We identified three major themes: creating awareness about disease and treatment choice, decision support and motivation to choose CC. Patients were often not aware of the option to choose CC. Patients felt supported by their loved ones during the decision-making process, although they perceived they made the final decision to choose CC themselves. Some patients felt pressured by their healthcare professional to choose dialysis. Reported reasons to choose CC were maintaining quality of life, treatment burden of dialysis, cost and the desire not to be a burden to others. In general, patients were satisfied with their decision for CC. CONCLUSIONS: By focussing on the perspective of patients, we identified a wide range of patient experiences and preferences regarding the decision-making process. These findings can help to improve the complex decision-making process between dialysis and CC and to provide patient-centred care.

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.

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.

What does shared decision making ask from doctors? Uncovering suppressed qualities that could improve person-centered care.

OBJECTIVE: Shared decision making (SDM) is infrequently seen in clinical practice despite four decades of efforts. We propose a need to explore what SDM asks from doctors in terms of enabling competencies and necessary, underlying qualities, and how these can be nurtured or suppressed in medical training. DISCUSSION: Key SDM tasks call for doctors to understand communication and decision mechanisms to carry them out well, including reflecting on what they know and do not know, considering what to say and how, and listening unprejudiced to patients. Different doctor qualities can support accomplishing these tasks; humility, flexibility, honesty, fairness, self-regulation, curiosity, compassion, judgment, creativity, and courage, all relevant to deliberation and decision making. Patient deference to doctors, lack of supervised training opportunities with professional feedback, and high demands in the work environment may all inflate the risk of only superficially involving patients. CONCLUSIONS: We have identified ten professional qualities and related competencies required for SDM, with each to be selected based on the specific situation. The competencies and qualities need to be preserved and nurtured during doctor identity building, to bridge the gap between knowledge, technical skills, and authentic efforts to achieve SDM.

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.

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.

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.

Assessment of patient symptom burden and information needs helps tailoring palliative care consultations: An observational study.

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.

Exploring the long-term psychosocial impact of paediatric haematopoietic stem cell transplantation for nonmalignant diseases.

INTRODUCTION: An understanding of the long-term psychosocial impact of paediatric haematopoietic stem cell transplantation (HSCT) for nonmalignant diseases is needed to optimize pre-HSCT counselling, supportive care and long-term follow-up programmes after HSCT for this group of patients and caregivers. METHODS: This qualitative study included 14 patients who underwent transplantation for a nonmalignant disease during childhood. In-depth interviews were held online to explore patients' perspectives on the long-term psychosocial impact of HSCT on their lives. The results were analysed based on the Grounded Theory approach. RESULTS: Patients' median age at the time of the interview was 19 years (range: 14-49), and the median years after HSCT was 12 years (range: 3-33). Four main themes were identified: (1) doing okay, (2) experiencing persistent involvement with healthcare services, (3) influence on relationships with loved ones and (4) impact on the patient's life course. Subthemes extracted were doing okay, feeling of being cured, health limitations, sense of vulnerability, ongoing connection to the hospital, acceptance, friendship, family relations, development of own identity, not taking life for granted, social development, impact on (school) career and thinking about the future. CONCLUSIONS: Patients reported active coping strategies and resilience after this high-impact treatment. The data highlight the need for patient-adjusted supportive care, indicating more need for supportive care in the long-term outpatient clinic. PATIENT CONTRIBUTION: This study included patients as participants. Caregivers were approached if patients were below a certain age. Additionally, preliminary results were presented during a patient conference day.

Identifying residents' educational needs to optimising postgraduate medical education about shared decision-making.

OBJECTIVE: To investigate how to optimise resident engagement during workplace learning of shared decision-making (SDM) by understanding their educational needs. METHODS: A qualitative multicentre study was conducted using video-stimulated interviews with 17 residents in General Practice. Video recordings of residents' recent clinical encounters were used to facilitate reflection on their educational needs. RESULTS: Data analysis resulted in five themes regarding residents' educational needs for learning SDM: acquiring knowledge and skills needed to perform SDM; practising SDM; reflection and feedback; longitudinal and integrated training; and awareness and motivation for performing SDM. CONCLUSION: Residents expressed a need for continuous attention to be paid to SDM during postgraduate medical education. That would help them engage in two parallel learning processes: acquiring the knowledge and skills necessary to perform SDM, and practising SDM in the clinical workplace. Alignment between the educational curriculum, workplace learning and resident learning activities is essential to operationalise SDM attitude, knowledge and skills into clinical performance. PRACTICE IMPLICATIONS: The identified educational needs provide ingredients for fostering the development of SDM proficiency. The findings suggest that residents and clinical supervisors need parallel training to bridge the gap between education and clinical practice when learning SDM.