Kunneman, Marleen

AbstractBackgroundThe development of novel diagnostics enables increasingly earlier diagnosis of Alzheimer's disease (AD). Timely diagnosis may benefit patients by reducing their uncertainty regarding the cause of symptoms, yet does not always provide patients with the desired certainty.ObjectiveTo examine, using both quantitative and qualitative methods, uncertainty communicated by memory clinic clinicians in post‐diagnostic testing consultations with patients and their caregivers.MethodsFirst, we identified all uncertainty expressions of 22 clinicians in audiotaped post‐diagnostic testing consultations with 78 patients. Second, we statistically explored relationships between patient/clinician characteristics and uncertainty expressions. Third, the transcribed uncertainty expressions were qualitatively analysed, determining the topic to which they pertained, their source and initiator/elicitor (clinicians/patients/caregivers).ResultsWithin 57/78 (73%) consultations, clinicians expressed in total 115 uncertainties, of which 37% elicited by the patient or caregiver. No apparent relationships were found between patient/clinician characteristics and whether or not, and how often clinicians expressed uncertainty. Uncertainty expressions pertained to ten different topics, most frequently patient's diagnosis and symptom progression. Expressed uncertainty was mostly related to the unpredictability of the future and limits to available knowledge.Discussion and conclusionsThe majority of clinicians openly discussed the limits of scientific knowledge and diagnostic testing with patients and caregivers in the dementia context. Noticeably, clinicians did not discuss uncertainty in about one quarter of consultations. More evidence is needed on the beneficial and/or harmful effects on patients of discussing uncertainty with them. This knowledge can be used to support clinicians to optimally convey uncertainty and facilitate patients' uncertainty management.

Background. There is a growing need for valid shared decision-making (SDM) measures. We aimed to determine whether the items of extant SDM observer-based coding schemes assess the 4 key elements of SDM. Methods. Items of SDM coding schemes were extracted and categorized. Except for the 4 key elements of SDM (fostering choice awareness, informing about options, discussing patient preferences, and making a decision), (sub)categories were created inductively. Two researchers categorized items independently and in duplicate. Results. Five of 12 coding schemes assessed all 4 SDM elements. Seven schemes did not measure “fostering choice awareness,” and 3 did not measure “discussing patient preferences.” Seventy of 194 items (36%) could not be classified into one of the key SDM elements. Items assessing key SDM elements most often assessed “informing about options” ( n = 57/124, 46%). Conclusion. Extant SDM coding schemes often do not assess all key SDM elements and have a strong focus on information provision while other crucial elements of SDM are underrepresented. Caution is therefore needed in reporting and interpreting the resulting SDM scores.

AbstractBackgroundReflecting (“stop‐and‐think”) before rating may help patients consider the quality of shared decision making (SDM) and mitigate ceiling/halo effects that limit the performance of self‐reported SDM measures.MethodsWe asked a diverse patient sample from the United States to reflect on their care before completing the 3‐item CollaboRATE SDM measure. Study 1 focused on rephrasing CollaboRATE items to promote reflection before each item. Study 2 used 5 open‐ended questions (about what went well and what could be improved upon, signs that the clinician understood the patient's situation, how the situation will be addressed, and why this treatment plan makes sense) to invite reflection before using the whole scale. A linear analogue scale assessed the extent to which the plan of care made sense to the patient.ResultsIn Study 1, 107 participants completed surveys (84% response rate), 43 (40%) rated a clinical decision of which 27 (63%) after responding to reflection questions. Adding reflection lowered CollaboRATE scores (“less” SDM) and reduced the proportion of patients giving maximum (ceiling) scores (not statistically significant). In Study 2, 103 of 212 responders (49%) fully completed the version containing reflection questions. Reflection did not significantly change the distribution of CollaboRATE scores or of top scores. Participants indicated high scores on the sense of their care plan (mean 9.7 out of 10, SD 0.79). This rating was weakly correlated with total CollaboRATE scores (rho = .4, P = .0001).ConclusionReflection‐before‐quantification interventions may not improve the performance of patient‐reported measures of SDM with substantial ceiling/halo effects.

AbstractIntroductionWe aimed to describe clinician‐patient communication in the diagnostic process of memory clinics, specifically clinician behavior known to facilitate knowledgeable participation of patients during consultations.MethodsIn this multicenter, observational study, we audio‐recorded routine diagnostic consultations of 41 clinicians and 136 patients/caregivers at eight memory clinics. Patients/caregivers completed surveys after each audiotaped consultation. We used a study‐specific coding scheme to categorize communication behavior.ResultsClinicians often provided information on (results of) diagnostic testing. They infrequently invited questions and/or checked understanding. Clinician behavior to involve patients in decision‐making about diagnostic testing was limited. Of note, patients/caregivers rarely expressed their information or involvement preferences. Yet, approximately, one quarter of them would have liked to receive more information.DiscussionInvolving patients more explicitly by means of shared decision‐making could benefit the quality of care provided in memory clinics because it enables clinicians to attune the diagnostic workup to the individual patient's needs.

Abstract Background Systemic treatment for advanced cancer offers uncertain and sometimes limited benefit, while the burden can be high. This study examines the effect of shared decision-making (SDM) training for medical oncologists on observed SDM in standardized patient assessments. Materials and Methods A randomized controlled trial comparing training with standard practice was conducted. Medical oncologists and oncologists-in-training (n = 31) participated in a video-recorded, standardized patient assessment at baseline (T0) and after 4 months (T1, after training). The training was based on a four-stage SDM model and consisted of a reader, two group sessions (3.5 hours each), a booster session (1.5 hours), and a consultation card. The primary outcome was observed SDM as assessed with the Observing Patient Involvement scale (OPTION12) coded by observers blinded for arm. Secondary outcomes were observed SDM per stage, communication skills, and oncologists’ satisfaction with communication. Results The training had a significant and large effect on observed SDM in the simulated consultations (Cohen's f = 0.62) and improved observed SDM behavior in all four SDM stages (f = 0.39–0.72). The training improved oncologists’ information provision skills (f = 0.77), skills related to anticipating/responding to emotions (f = 0.42), and their satisfaction with the consultation (f = 0.53). Conclusion Training medical oncologists in SDM about palliative systemic treatment improves their performance in simulated consultations. The next step is to examine the effect of such training on SDM in clinical practice and on patient outcomes. Implications for Practice Systemic treatment for advanced cancer offers uncertain and sometimes limited benefit, while the burden can be high. Hence, applying the premises of shared decision-making (SDM) is recommended. SDM is increasingly advocated based on the ethical imperative to provide patient-centered care and the increasing evidence for beneficial patient outcomes. Few studies examined the effectiveness of SDM training in robust designs. This randomized controlled trial demonstrated that SDM training (10 hours) improves oncologists’ performance in consultations with standardized patients. The next step is to examine the effect of training on oncologists’ performance and patient outcomes in clinical practice.