The ULTRA trial evaluated the impact of ultra-early and short-term tranexamic acid (TXA) treatment in patients with subarachnoid hemorrhage (SAH) and found no clinical benefit at six months. This post-hoc analysis examines whether TXA improves quality of life (QoL) at three and six months. The ULTRA trial was a randomized, controlled, multicenter study conducted from July 2013 to July 2019. Patients received either TXA or standard care. This analysis included patients who completed at least one QoL questionnaire. The primary endpoint was QoL, assessed using the EQ-5D-3L questionnaire at three and six months. Linear mixed models adjusted for confounders were used to analyze the association between TXA and QoL. Of the 955 ULTRA patients, approximately 25
The ULTRA trial demonstrated no improvement in clinical outcome at 6 months in patients with subarachnoid hemorrhage (SAH) when treated with ultra-early and short-term tranexamic acid (TXA). In this post hoc analysis, we evaluated the effect of TXA in females and males on clinical outcome after aneurysmal SAH (aSAH). The ULTRA trial was a prospective, randomized, controlled, open-label trial, conducted between 2013 and 2020. Patients with spontaneous SAH were assigned to ultra-early, short-term TXA in addition to usual care, or usual care only. In this study, we only included ULTRA participants with radiologically proven aSAH. We analyzed the potential effect of sex on the association between treatment group and clinical outcome by assessing effect modification, and evaluated the effect of TXA separately in females and males. The primary endpoint was clinical outcome at 6 months, assessed by the distribution of the modified Rankin Scale (mRS). Odds ratios (OR) and adjusted OR (aOR) with 95
Background Dementia is a syndrome with various presumed causes, such as Alzheimer's disease. Communicating the cause of dementia is challenging for clinicians, involving complex information and frequent uncertainties. Objective We explored perspectives of patients with mild cognitive impairment or dementia (Alzheimer's disease, Lewy body dementia, frontotemporal dementia, vascular dementia, or mixed pathology) and their care partners, on what communication they prefer about the cause of dementia and related uncertainty. Methods We held focus groups and interviews in the Netherlands, with 22 patients who had received a diagnosis at the memory clinic in the past four months, and their 21 care partners. Data were analyzed using content analysis. Results Participants showed poor knowledge of the presumed cause, often mentioning risk factors (e.g., age, "bad luck", genetics, lifestyle). During the diagnostic disclosure, clinicians' communication efforts (e.g., visualization of test results) enhanced participants' understanding. Participants' needs regarding etiological information varied: some desired detailed information to obtain clarity and receive appropriate care, while others preferred minimal information because of perceived limited added value and potential information overload. We observed no clear demographic or clinical patterns in these preferences. Participants emphasized the importance of clinicians being explicit about the presence of uncertainty, with care partners particularly indicating strong information needs. Conclusions Findings reveal much variation in the extent to which patients and care partners wish to receive information about the cause of dementia and related uncertainty, highlighting the need for a personalized approach.
OBJECTIVE:To evaluate the cost-effectiveness and cost-utility of adding ultra-early and short-term administration of tranexamic acid (TXA) to standard care in patients with subarachnoid hemorrhage (SAH). MATERIALS AND METHODS:An economic evaluation was performed alongside the ultra-early tranexamic acid after subarachnoid hemorrhage (ULTRA) trial. The main outcomes were the incremental cost-effectiveness ratio (ICER), expressed as costs per one-point increase in modified Rankin scale (mRS) score, and the incremental cost-utility ratio (ICUR), expressed as costs per quality-adjusted life-year (QALY). Cost-effectiveness acceptability curves (CEACs) were visualized with varying ICER cut-offs. Bootstrapping techniques and sensitivity analyses were performed to account for uncertainty. RESULTS:The ULTRA trial included 955 patients, with 480 assigned to the TXA group and 475 to the control group. The mean mRS score was 3.4 (95% CI: 3.2-3.5) in the TXA group and 3.2 (95% CI: 3.0-3.4) in the control group. The mean QALY was 0.26 (95% CI: 0.24-0.28) in the TXA group and 0.28 (95% CI: 0.26-0.30) in the control group. Mean costs were €62,180 (95% CI: 57,589-66,913) in the TXA group and €58,624 (95% CI: 53,693-63,955) in the control group. The probability of treatment with TXA being cost-effective ranged from 4% to 16% for mRS and from 8% to 16% for QALYs. CONCLUSIONS:Ultra-early and short-term administration of TXA to patients with SAH is not cost-effective. Therefore, we recommend against using TXA for this patient group. TRIAL REGISTRATION:Netherlands Trial Register: NTR3272. CLINICALTRIALS:gov identifier: NCT02684812.
Progressive multifocal leukoencephalopathy is a rare but potentially fatal disease caused by infection of the central nervous system with John Cunningham polyomavirus. Progressive multifocal leukoencephalopathy mainly occurs in immunocompromised patients, including patients on biological and targeted synthetic therapies, such as multiple sclerosis and rheumatoid arthritis patients. Early diagnosis of progressive multifocal leukoencephalopathy is crucial for patient survival. We describe a case of progressive multifocal leukoencephalopathy with significant diagnostic delay in a rheumatoid arthritis patient using rituximab. Additionally, we give an overview of available literature on progressive multifocal leukoencephalopathy in rheumatoid arthritis patients using biologicals, focusing on the diagnostic difficulties and delays, to raise awareness of this adverse event among physicians treating rheumatoid arthritis patients with immunosuppressants. A 69-year-old white man of Dutch descent with rheumatoid arthritis treated with rituximab presented to a neurology outpatient clinic, complaining of difficulties in word-finding and reading without problems in visual acuity, several weeks after a mild traumatic head injury (patient’s delay). Brain computed tomography-scan showed two hypodense white-matter lesions, initially considered to be of vascular origin (doctor’s delay). However, magnetic resonance imaging, performed more than a week later, showed lesions consistent with progressive multifocal leukoencephalopathy. Immunosuppressants were then immediately discontinued. The patient agreed to repeat magnetic resonance imaging and lumbar puncture. Initial John Cunningham polyomavirus polymerase chain reaction on cerebrospinal fluid was negative. However, a subsequent lumbar puncture confirmed the diagnosis. The patient rejected experimental treatment with pembrolizumab and passed away a month after the initial presentation. This case report emphasizes the need for increased awareness and importance of timely recognition of potential progressive multifocal leukoencephalopathy in rheumatoid arthritis patients using immunosuppressive therapies. A total of 26 other cases of rheumatoid arthritis patients using biologicals who developed progressive multifocal leukoencephalopathy were identified from the literature, and we reviewed their cases. Most (24; 92
ADappt is a digital toolkit for both memory clinic professionals and patients to support communication on diagnosis and prognosis in memory clinics. We aimed to evaluate ADappt’s usability and feasibility in clinical practice. In this mixed-methods study, we first assessed usability via think-aloud sessions with ten memory clinic professionals from eight memory clinics, six patients, and one care partner. Think-aloud comments were deductively categorized into: content, navigation, and design. Second, we conducted a feasibility study in four memory clinics. Eight memory clinic professionals recruited 21 patients and 21 care partners. Professionals were instructed to integrate the ADappt-toolkit in their routine. Before their visit, patients received information about the ADappt-patient tools: two video-animations and a question prompt list (QPL). Participants completed questionnaires on usability, satisfaction, and feasibility either after the first consultation (n = 14 patients; n = 15 care partners), after the disclosure consultation (n = 4 patients; n = 5 care partners), or after both consultations (n = 3 patients; n = 1 care partner). Interviews with professionals were conducted and analyzed using thematic content analysis. Third, together with Alzheimer Europe, we co-organized a patient and public involvement (PPI) session with citizens, patients, and care partners to further improve the patient tools. Professionals found ADappt relevant, easy-to-navigate, and visually appealing. Most think-aloud comments focused on content and navigation, especially regarding the risk calculation tool. Patients indicated the patient tools to be helpful in preparing for consultations. After use in practice, professionals reported acceptable usability (68 ± 14, scale 0-100) and satisfaction (71 ± 10, scale 0-100) with ADappt. Professionals most often used the tool that provides an overview of diagnostic tests with pros and cons (in 15/24(63
BACKGROUND AND OBJECTIVES:The results of the ULTRA trial showed that ultra-early and short-term treatment with tranexamic acid (TXA) does not improve clinical outcome after aneurysmal subarachnoid hemorrhage (aSAH). Possibly, the lack of a beneficial effect in all patients with aSAH is masked by antagonistic effects of TXA in certain subgroups. In this post hoc subgroup analysis, we investigated the effect of TXA on clinical outcome in patients with good-grade and poor-grade aSAH. METHODS:The ULTRA trial was a multicenter, prospective, randomized, controlled, open-label trial with blinded outcome assessment. Participants received ultra-early and short-term TXA in addition to usual care or usual care only. This post hoc subgroup analysis included only ULTRA participants with confirmed aSAH and available World Federation of Neurosurgical Societies (WFNS) grade on admission. Patients were categorized into those with good-grade (WFNS 1-3) and poor-grade (WFNS 4-5) aSAH. The primary outcome was clinical outcome assessed by the modified Rankin scale (mRS). Odds ratios (ORs) and adjusted ORs (aORs) with 95% CIs were calculated using ordinal regression analyses. Analyses were performed using the as-treated principle. In all patients with aSAH, no significant effect modification of TXA on clinical outcome was observed for admission WFNS grade (p = 0.10). RESULTS:Of the 812 ULTRA participants, 473 patients had (58%; N = 232 TXA, N = 241 usual care) good-grade and 339 (42%; N = 162 TXA, N = 176 usual care) patients had poor-grade aSAH. In patients with good-grade aSAH, the TXA group had worse clinical outcomes (OR: 0.67, 95% CI 0.48-0.94, aOR 0.68, 95% CI 0.48-0.94) compared with the usual care group. In patients with poor-grade aSAH, clinical outcomes were comparable between treatment groups (OR: 1.04, 95% CI 0.70-1.55, aOR 1.05, 95% CI 0.70-1.56). DISCUSSION:This post hoc subgroup analysis provides another important argument against the use of TXA treatment in patients with aSAH, by showing worse clinical outcomes in patients with good-grade aSAH treated with TXA and no clinical benefit of TXA in patients with poor-grade aSAH, compared with patients treated with usual care. TRIAL REGISTRATION INFORMATION:ClinicalTrials.gov (NCT02684812; submission date February 18, 2016, first patient enrollment on July 24, 2013). CLASSIFICATION OF EVIDENCE:This study provides Class II evidence that tranexamic acid, given for <24 hours within the first 24 hours, does not improve the 6-month outcome in good-grade or poor initial-grade aneurysmal SAH.
ADappt is a Web-based toolkit (www.ADappt.health) to support personalized communication and prediction in memory clinics. In the context of an iterative development process with professionals, patients, and care partners, we assessed feasibility, satisfaction, and usability of ADappt in the clinical workflow. We conducted a feasibility pilot in four Dutch memory clinics. Three neurologists, one geriatrician, two specialized nurses and two medical doctors (12±7y clinical experience) participated and recruited 21 patients (69±8yrs, 19%F) and 21 care partners (60±15yrs, 81%F). For professionals, ADappt-modules comprised a 1) topic list, 2) shared decision-making conversation guide, 3) overview of diagnostic tests, and 4) risk calculation tool. Prior to their visit, patients and care partners were informed about ADappt-patient tools: 1) educational video-animations, and 2) question prompt list. All participants completed questionnaires on feasibility, satisfaction, and usability after the first (n = 17) and/or the disclosure (n = 7) consultation. Professionals were interviewed afterward. Professionals reported good usability (68±14, range 50-83, System Usability Scale, 0-100) and high satisfaction (71±10, range 50-85, scale 0-100). They most often used the overview of diagnostic tests (67%) and reported this module as most helpful (3.8±0.4, range 3-4, scale 1-5). Patients and care partners were highly satisfied with the clinician-patient consultations in general (81±14, range 50-100, Patient Satisfaction Questionnaire, scale 0-100). Of those who reported to know and have used the patient tools (54%), 97% would recommend them, whereby most used the question prompt list (84%) and a smaller proportion the video-animations (64%). Recommendations from the interviews to improve feasibility include: 1) the development of more concrete instructions for professionals on how to use ADappt, and 2) a better alignment of patient tools with the patient journey and general information provided by that particular memory clinic. Stakeholders reported good usability and high satisfaction regarding ADappt. Points of attention to foster feasibility in the clinical workflow are: 1) improved training for professionals and 2) improving the accessibility of patient tools. We take these matters into account while preparing for the next step: a prospective validation study in the memory clinic setting to study the influence of ADappt on patient satisfaction.
Objective: We investigated motivations of patients and care partners for their memory clinic visit, and whether these are expressed in consultations.Methods: We included data from 115 patients (age 71 +/- 11, 49% Female) and their care partners (N = 93), who completed questionnaires after their first consultation with a clinician. Audio-recordings of these consultations were available from 105 patients. Motivations for visiting the clinic were content-coded as reported by patients in the questionnaire, and expressed by patients and care partners in consultations.Results: Most patients reported seeking a cause for symptoms (61%) or to confirm/exclude a (dementia) diagnosis (16%), yet 19% reported another motivation: (more) information, care access, or treatment/advice. In the first consultation, about half of patients (52%) and care partners (62%) did not express their motivation(s). When both expressed a motivation, these differed in about half of dyads. A quarter of patients (23%) expressed a different/complementary motivation in the consultation, then reported in the questionnaire.Conclusion: Motivations for visiting a memory clinic can be specific and multifaceted, yet are often not addressed during consultations. Practice implications: We should encourage clinicians, patients, and care partners to talk about motivations for visiting the memory clinic, as a starting point to personalize (diagnostic) care.
OBJECTIVE:To investigate the influence of frailty in elderly with severe TBI on mortality and functional outcome.METHOD:126 patients with TBI aged 60 years or older and with a presenting Glasgow Coma Scale score of 8 or lower were retrospectively included. To investigate frailty, we used the CSHA Clinical Frailty Scale. The primary outcome measures were mortality, and the secondary outcome measures were Glasgow Outcome Scale Extended (GOSE) at discharge and GOSE at 6 months after trauma.RESULTS:High frailty was a significant predictor for mortality (OR 2.38, p 0.047), if adjusted for the injury severity scale. High frailty was also a significant predictor for poor functional outcome after 6 months (OR 4.35, p 0.03). After 6 months, the GOSE of the low frailty group was significantly higher than in the high frailty group (p 0.019). Also, the improvement of the GOSE was significant in the low frailty group (p 0.007), while in the high frailty group there was no significant improvement of the GOSE (p 0.546) after 6 months.CONCLUSION:Frailty has a significant impact on outcome in elderly with severe TBI. There is a higher mortality in the frail elderly and there is less recovery after TBI.
Neurodegeneration in suspected Alzheimer’s disease can be determined using visual rating or quantitative volumetric assessments. We examined the feasibility of volumetric measurements of gray matter (GMV) and hippocampal volume (HCV) and compared their diagnostic performance with visual rating scales in academic and non-academic memory clinics. We included 231 patients attending local memory clinics (LMC) in the Netherlands and 501 of the academic Amsterdam Dementia Cohort (ADC). MRI scans were acquired using local protocols, including a T1-weighted sequence. Quantification of GMV and HCV was performed using FSL and FreeSurfer. Medial temporal atrophy and global atrophy were assessed with visual rating scales. ROC curves were derived to determine which measure discriminated best between cognitively normal (CN), mild cognitive impairment (MCI), and Alzheimer’s dementia (AD). Patients attending LMC (age 70.9 ± 8.9 years; 47
Background Aneurysmal subarachnoid hemorrhage (aSAH) is an important indication for intensive care unit admission and may lead to significant morbidity and mortality. We assessed the ability of C-terminal proarginine vasopressin (CT-proAVP) to predict disease outcome, mortality, and delayed cerebral ischemia (DCI) in critically ill patients with aSAH compared with the World Federation of Neurological Surgeons (WFNS) score and Acute Physiological and Chronic Health Evaluation IV (APACHE IV) model. Methods C-terminal proarginine vasopressin was collected on admission in this single-center, prospective, observational cohort study. The primary aim was to investigate the relationship between CT-proAVP and poor functional outcome at 1 year (Glasgow Outcome Scale score 1–3) in a multivariable logistic regression model adjusted for WFNS and APACHE IV scores. Secondary aims were mortality and DCI. The multivariable logistic regression model for DCI was also adjusted for the modified Fisher scale. Results In 100 patients, the median CT-proAVP level was 24.9 pmol/L (interquartile range 11.5–53.8); 45 patients had a poor 1-year functional outcome, 19 patients died within 30 days, 25 patients died within 1 year, and DCI occurred in 28 patients. Receiver operating characteristics curves revealed high accuracy for CT-proAVP to identify patients with poor 1-year functional outcome (area under the curve [AUC] 0.84, 95% confidence interval [CI] 0.77–0.92, p < 0.001), 30-day mortality (AUC 0.84, 95% CI 0.76–0.93, p < 0.001), and 1-year mortality (AUC 0.79, 95% CI 0.69–0.89, p < 0.001). CT-proAVP had a low AUC for identifying patients with DCI (AUC 0.67, 95% CI 0.55–0.79, p 0.008). CT-proAVP ≥ 24.9 pmo/L proved to be a significant predictor for poor 1-year functional outcome (odds ratio [OR] 8.04, 95% CI 2.97–21.75, p < 0.001), and CT-proAVP ≥ 29.1 pmol/L and ≥ 27.7 pmol/L were significant predictors for 30-day and 1-year mortality (OR 9.31, 95% CI 1.55–56.07, p 0.015 and OR 5.15, 95% CI 1.48–17.93, p 0.010) in multivariable models with WFNS and APACHE IV scores. CT-proAVP ≥ 29.5 pmol/L was not a significant predictor for DCI in a multivariable model adjusted for the modified Fisher scale ( p = 0.061). Conclusions C-terminal proarginine vasopressin was able to predict poor functional outcome and mortality in critically ill patients with aSAH. Its prognostic ability to predict DCI was low. Trial Registration Nederlands Trial Register: NTR4118.
Background and Objectives The ULTRA trial showed that ultra-early and short-term tranexamic acid treatment after subarachnoid hemorrhage did not improve clinical outcome at 6 months. An expected proportion of the included patients experienced nonaneurysmal subarachnoid hemorrhage. In this post hoc study, we will investigate whether ultra-early and short-term tranexamic acid treatment in patients with aneurysmal subarachnoid hemorrhage improves clinical outcome at 6 months. Methods The ULTRA trial is a multicenter, prospective, randomized, controlled, open-label trial with blinded outcome assessment, conducted between July 24, 2013, and January 20, 2020. After confirmation of subarachnoid hemorrhage on noncontrast CT, patients were allocated to either ultra-early and short-term tranexamic acid treatment with usual care or usual care only. In this post hoc analysis, we included all ULTRA participants with a confirmed aneurysm on CT angiography and/or digital subtraction angiography. The primary endpoint was clinical outcome at 6 months, assessed by the modified Rankin scale (mRS), dichotomized into good (0–3) and poor (4–6) outcomes. Results Of the 813 ULTRA trial patients who experienced an aneurysmal subarachnoid hemorrhage, 409 (50%) were assigned to the tranexamic acid group and 404 (50%) to the control group. In the intention-to-treat analysis, 233 of 405 (58%) patients in the tranexamic acid group and 238 of 399 (60%) patients in the control group had a good clinical outcome (adjusted odds ratio [aOR] 0.92; 95% CI 0.69–1.24). None of the secondary outcomes showed significant differences between the treatment groups: excellent clinical outcome (mRS 0–2) (aOR 0.76; 95% CI 0.57–1.03), all-cause mortality at 30 days (aOR 0.91; 95% CI 0.65–1.28), and all-cause mortality at 6 months (aOR 1.10; 95% CI 0.80–1.52). Discussion Ultra-early and short-term tranexamic acid treatment did not improve clinical outcomes at 6 months in patients with aneurysmal subarachnoid hemorrhage and therefore cannot be recommended. Trial Registration Information ClinicalTrials.gov (NCT02684812; submission date February 18, 2016, first patient enrollment on July 24, 2013). Classification of Evidence This study provides Class II evidence that tranexamic acid does not improve outcomes in patients presenting with aneurysmal subarachnoid hemorrhage.
ABSTRACTIntroductionA timely diagnosis of Alzheimer’s Disease (AD) in an early stage of dementia is important to support timely access to treatment, advice, and care. The aim of this study was to estimate the diagnostic accuracy of [18F]flutemetamol PET in addition to the usual diagnostic workup for the diagnosis of AD in a memory clinic population with young onset dementia by means of a panel reference-based etiology diagnosis.Methodsin an academic memory clinic early onset dementia cohort (n=211) the nosological diagnosis was set by usual diagnostic workup and after including [18F]flutemetamol amyloid PET in a stepwise approach. To assess the change in proportion correctly diagnosed, the diagnosis with and without [18F]flutemetamol PET was related to a panel-based reference standard, serving as gold standard, consisting of 3 neurologists who relied on available clinical information over 2-year follow-up (n=152; blinded for PET).ResultsThe panel majority nosology was set as a reference diagnosis in 122 participants, leaving 30 (20%) participants with no majority reached. In 107 (88%) cases post-PET was in line with the reference, and in 103 (84%) the pre-PET diagnosis was in line with the reference. The difference was 3.3% (95% CI -3.5% to 10.1%; p=0.424).Discussion[18F]flutemetamol PET did not significantly improve the diagnostic accuracy in young patients with dementia in an academic memory clinic setting. The secondary analyses provided several indications for future research in a narrower subsample of persons with (very) high diagnostic uncertainty and to assess patient relevant health outcomes.
Background We aimed to explore clinicians’ communication, including the discussion of diagnosis, cause, prognosis and care planning, in routine post-diagnostic testing consultations with patients with Mild Cognitive Impairment (MCI). Methods Thematic content analysis was used to analyze audiotaped consultations in which 10 clinicians (eight neurologists and two geriatricians) from 7 memory clinics, disclosed diagnostic information to 13 MCI patients and their care partners. We assessed clinician-patient communication regarding diagnostic label, cause, prognosis and care planning to identify core findings. Results Core findings were: clinicians 1) differed in how they informed about the MCI label; 2) tentatively addressed cause of symptoms; 3) (implicitly) steered against further biomarker testing; 4) rarely informed about the patient’s risk of developing dementia; 5) often informed about the expected course of symptoms emphasizing potential symptom stabilization and/or improvement, and; 6) did not engage in a conversation on long-term (care) planning. Discussion Clinicians’ information provision about the underlying cause, prognosis and implications for long-term (care) planning in MCI could be more specific. Since most patients and care partners have a strong need to understand the patient’s symptoms, and for information on the prognosis and implications for the future, clinicians’ current approach may not match with those needs.
Purpose: Functional outcome prediction for patients with traumatic axonal injury (TAI) is not highly related to the MRI classifications. The aim of this study was to assess the accuracy in predicting functional outcome in patients with TAI with several MRI scoring methods and to define the most accurate method.Methods: Patients with TAI (2008-2014) confirmed on MRI <6 months after injury were included in this retrospective study. Long-term functional outcome was prospectively assessed using the Glasgow Outcome Score Extended. The Gentry classification is most used in clinical practice. This method was compared to methods that score lesion load, lesion locations, and to modified Gentry classifications. The area under the curve (AUC) was calculated for the scoring methods.Results: A total of 124 patients with TAI were included, medium follow-up 52 months. The AUC for the Gentry classification was 0.64. All tested methods were poor predictors for functional outcome, except for the 6-location score (area under the curve: 0.71). No method was significantly better than the Gentry classification.Conclusion: The Gentry classification for TAI correlates with functional outcome, but is a poor predictor for the long-term functional outcome. None of the other tested methods was significantly better.
It is currently unknown whether patients with dementia with Lewy bodies (DLB) with relatives with dementia or Parkinson's disease (familial DLB patients) have a different phenotype than sporadic DLB patients. In this study, we aimed to examine disease onset, rate of cognitive decline, survival, and Alzheimer's disease (AD) biomarkers in patients with familial DLB (n = 154) and sporadic DLB (n = 137), using linear mixed model analysis and Cox regression analysis, among others. Familial patients had a shorter survival (8.0 years) and more often elevated cerebrospinal fluid AD biomarkers (47%) than sporadic patients (9.0 years; p≤0.001; 30%, p = 0.037). Our findings suggest that genetic factors are important in DLB and that the identification of new genetic factors will probably improve the prediction of prognosis.
AbstractBackgroundWe studied to what degree and at whose initiative 25 informational topics, formerly identified as important, are discussed in diagnostic consultations.MethodsAudio recordings of clinician–patient consultations of 71 patients and 32 clinicians, collected in eight Dutch memory clinics, were independently content‐coded by two coders. The coding scheme encompassed 25 informational topics.ResultsApproximately half (Mdn = 12) of the 25 topics were discussed per patient during the diagnostic process, with a higher frequency among individuals receiving a dementia diagnosis (Mdn = 14) compared to others (Mdn = 11). Individual topics ranged from being discussed with 2/71 (3%) to 70/71 (99%) of patients. Patients and/or care partners rarely initiated topic discussion (10%). When they did, they often enquired about one of the least frequently addressed topics.ConclusionMost patients received information on approximately half of the important informational topics. Providing the topic list to patients and care partners beforehand could allow consultation preparation and stimulate participation.