What makes a patient ready for Shared Decision Making? A qualitative study.

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 patient- and 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.

Measuring shared decision making in oncology: Development and first testing of the iSHAREpatient and iSHAREphysician questionnaires.

BACKGROUND: Existing measures to assess shared decision making (SDM) have often been developed based on an ill-defined underlying construct, and many assess physician behaviours only or focus on a single patient-physician encounter. OBJECTIVE: To (a) develop a patient and a physician questionnaire to measure SDM in oncology and (b) determine their content validity and comprehensibility. METHODS: A systematic review of SDM models and an oncology-specific SDM model informed the domains of the SDM construct. We formulated items for each SDM domain. Cancer patients and physicians rated content validity in an online questionnaire. We assumed a formative measurement model and performed online field-testing in cancer patients to inform further item reduction. We tested item comprehension in cognitive interviews with cancer patients and physicians. RESULTS: We identified 17 domains and formulated 132 items. Twelve cancer patients rated content validity at item level, and 11 physicians rated content validity at domain level. We field-tested the items among 131 cancer patients and conducted cognitive interviews with eight patients and five physicians. These phases resulted in the 15-item iSHAREpatient and 15-item iSHAREphysician questionnaires, covering 13 domains. CONCLUSIONS: We thoroughly developed the iSHARE questionnaires. They both assess patient and physician behaviours and cover the entire SDM process rather than a single consultation.

Shared decision making in oncology: A model based on patients', health care professionals', and researchers' views.

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.

Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer.

BACKGROUND: Treatment decision making is often guided by evidence-based probabilities, which may be presented to patients during consultations. These probabilities are intrinsically imperfect and embody 2 types of uncertainties: aleatory uncertainty arising from the unpredictability of future events and epistemic uncertainty arising from limitations in the reliability and accuracy of probability estimates. Risk communication experts have recommended disclosing uncertainty. We examined whether uncertainty was discussed during cancer consultations and whether and how patients perceived uncertainty. METHODS: Consecutive patient consultations with medical oncologists discussing adjuvant treatment in early-stage breast cancer were audiotaped, transcribed, and coded. Patients were interviewed after the consultation to gain insight into their perceptions of uncertainty. RESULTS: In total, 198 patients were included by 27 oncologists. Uncertainty was disclosed in 49% (97/197) of consultations. In those 97 consultations, 23 allusions to epistemic uncertainty were made and 84 allusions to aleatory uncertainty. Overall, the allusions to the precision of the probabilities were somewhat ambiguous. Interviewed patients mainly referred to aleatory uncertainty if not prompted about epistemic uncertainty. Even when specifically asked about epistemic uncertainty, 1 in 4 utterances referred to aleatory uncertainty. When talking about epistemic uncertainty, many patients contradicted themselves. In addition, 1 in 10 patients seemed not to realize that the probabilities communicated during the consultation are imperfect. CONCLUSIONS: Uncertainty is conveyed in only half of patient consultations. When uncertainty is communicated, oncologists mainly refer to aleatory uncertainty. This is also the type of uncertainty that most patients perceive and seem comfortable discussing. Given that it is increasingly common for clinicians to discuss outcome probabilities with their patients, guidance on whether and how to best communicate uncertainty is urgently needed.

Breast cancer specialists' views on and use of risk prediction models in clinical practice: a mixed methods approach.

PURPOSE: Risk prediction models (RPM) in breast cancer quantify survival benefit from adjuvant systemic treatment. These models [e.g. Adjuvant! Online (AO)] are increasingly used during consultations, despite their not being designed for such use. As still little is known about oncologists' views on and use of RPM to communicate prognosis to patients, we investigated if, why, and how they use RPM. METHODS: We disseminated an online questionnaire that was based on the literature and individual and group interviews with oncologists. RESULTS: Fifty-one oncologists (partially) completed the questionnaire. AO is the best known (95%) and most frequently used RPM (96%). It is used to help oncologists decide whether or not to recommend chemotherapy (>85%), to inform (86%) and help patients decide about treatment (>80%), or to persuade them to follow the proposed course of treatment (74%). Most oncologists (74%) believe that using AO helps patients understand their prognosis. CONCLUSION: RPM have found a place in daily practice, especially AO. Oncologists think that using AO helps patients understand their prognosis, yet studies suggest that this is not always the case. Our findings highlight the importance of exploring whether patients understand the information that RPM provide.

Surgical adverse outcomes and patients' evaluation of quality of care: inherent risk or reduced quality of care?

BACKGROUND: Previous research has shown that sicker patients are less satisfied with their healthcare, but specific effects of adverse health outcomes have not been investigated. The present study aimed to assess whether patients who experience adverse outcomes, in hospital or after discharge, differ in their evaluation of quality of care compared with patients without adverse outcomes. METHOD: In hospital adverse outcomes were prospectively recorded by surgeons and surgical residents as part of routine care. Four weeks after discharge, patients were interviewed by telephone about the occurrence of post-discharge adverse outcomes, and their overall evaluation of quality of hospital care and specific suggestions for improvements in the healthcare provided. RESULTS: Of 2145 surgical patients admitted to the Leiden University Medical Center in 2003, 1876 (88%) agreed to be interviewed. Overall evaluation was less favourable by patients who experienced post-discharge adverse outcomes only (average 19% lower). These patients were also more often dissatisfied (OR 2.02, 95% CI 1.24 to 3.31) than patients without adverse outcomes, and they more often suggested that improvements were needed in medical care (OR 2.07, 1.45 to 2.95) and that patients were discharged too early (OR 3.26, 1.72 to 6.20). The effect of in hospital adverse outcomes alone was not statistically significant. Patients with both in hospital and post-discharge adverse outcomes also found the quality of care to be lower (on average 33% lower) than patients without adverse outcomes. CONCLUSIONS: Post-discharge adverse outcomes negatively influence patients' overall evaluation of quality of care and are perceived as being discharged too early, suggesting that patients need better information at discharge.