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.

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.

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.

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.

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.

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-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.

Patient-clinician collaboration in making care fit: A qualitative analysis of clinical consultations in diabetes care.

OBJECTIVE: To confirm described dimensions of making care fit and explore how patients and clinicians collaborate to make care fit in clinical practice. METHODS: As part of an ongoing study, we audiotaped and transcribed patient-clinician consultations in diabetes care. We purposively selected consultations based on participants' demographical, biomedical and biographical characteristics. We analysed transcripts using reflexive thematic analysis. We combined a deductive and inductive approach, using the pre-described dimensions of making care fit and adding new (sub-)dimensions when pertinent. RESULTS: We analysed 24 clinical consultations. Our data confirmed eight previously described dimensions and provided new sub-dimensions of making care fit with examples from clinical practice (problematic situation, influence of devices, sense of options, shared agenda setting, clinician context, adapting to changing organization of care, and possibility to reconsider). CONCLUSION: Our study confirmed, specified and enriched the conceptualization of making care fit through practice examples. We observed patient-clinician collaboration in exploration of patients' context, and by responsively changing, adapting or maintaining care plans. PRACTICE IMPLICATIONS: Our findings support clinicians and researchers with insights in important aspects of patient-clinician collaboration. Ultimately, this would lead to optimal design of care plans that fit well in each patient life.

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.

What questions are most important to pancreatic cancer patients soon after diagnosis? A multicenter survey

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, 1­7) 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, 21­83) 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, 1­5) and for 77/84 questions that it was not applicable (Md = 3.5 participants, range, 1­30). 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 (AU)