Communicating uncertainties when disclosing diagnostic test results for (Alzheimer's) dementia in the memory clinic: The ABIDE project.

BACKGROUND: The 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. OBJECTIVE: To examine, using both quantitative and qualitative methods, uncertainty communicated by memory clinic clinicians in post-diagnostic testing consultations with patients and their caregivers. METHODS: First, 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). RESULTS: Within 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 CONCLUSIONS: The 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.

Motivations of patients and their care partners for visiting a memory clinic. A qualitative study.

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.

What patients want to know, and what we actually tell them: The ABIDE project.

BACKGROUND: We studied to what degree and at whose initiative 25 informational topics, formerly identified as important, are discussed in diagnostic consultations. METHODS: Audio 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. RESULTS: Approximately 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. CONCLUSION: Most 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.

Clinicians' communication with patients receiving a MCI diagnosis: The ABIDE project.

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.

Spontaneous Spinal Subdural Hematoma.

OBJECTIVE: Spinal subdural hematomas (SSDHs) are rare. Causes are (1) posttraumatic, (2) iatrogenic (following surgery or lumbar puncture), (3) spontaneous including underlying malformations or coagulation deficits. With a systematic review of literature we want to shed light on the last group: symptomatology, etiology, treatment and outcome will we discussed. METHODS: Systematic review of literature on PubMed for cases of acute nontraumatic noniatrogenic SSDHs in adults (≥18 y of age). A total of 122 cases were reviewed including 2 cases from our hospital. RESULTS: There was a slight preponderance of female patients with spontaneous SSDHs and the mean age was 60 years. Spontaneous SSDHs were mostly located in the thoracic region (40%). Motor symptoms were most frequent (89%), followed by pain. Sensory deficits were present in 64%, of which 81% had a sensory level. In 6% radiculating pain, without any focal neurological deficits, was the presenting symptom. SSDHs were mainly caused by a coagulopathy (48%), predominantly due to the use of coumarins (34%). Other causes were underlying (vascular) malformations and vasculitis. Forty-three percent the SSDHs was idiopathic. 72% of patients underwent a decompressive laminectomy. 59% had a favorable outcome and 34% had a poor outcome. CONCLUSIONS: Spontaneous SSDHs were predominantly located in the thoracic spine, presenting with paraparesis/paraplegia, sensory level and pain. Over 40% was caused by a coagulation defect, most frequently due to coumarins. Six percent of patients presented with radiculating pain without any focal neurological deficits.

Cognitive Decline in Patients with Chronic Hydrocephalus and Normal Aging: 'Growing into Deficits'.

BACKGROUND/AIM: To explore the theory of 'growing into deficits', a concept known from developmental neurology, in a series of cases with chronic hydrocephalus (CH). METHODS: Patients were selected from the Amsterdam Dementia Cohort and underwent extensive dementia screening. RESULTS: Twelve patients with CH were selected, in whom Alzheimer's disease was considered unlikely, based on biomarker information and follow-up. Mean Mini-Mental State Examination score was 24 (range 7-30). Most patients were functioning on a level of mild dementia [Clinical Dementia Rating score of 0.5 in 8/11 (66.7%) patients]. On neuropsychological examination, memory and executive functions, as well as processing speed were most frequently impaired. CONCLUSION: In our opinion, the theory of 'growing into deficits' shows a parallel with the clinical course of CH and normal aging when Alzheimer's disease was considered very unlikely, because most of these patients were functioning well for a very large part of their lives. The altered cerebrospinal fluid dynamics might make the brain more vulnerable to aging-related changes, leading to a faster cognitive decline in CH patients compared to healthy subjects, especially in case of concomitant brain damage such as traumatic brain injury or meningitis.

[A patient with vision problems: first manifestation of a neurodegenerative condition]. / Een patiënt met visuele problemen: Eerste uiting van neurodegeneratieve aandoening.

BACKGROUND: Vision problems are common and the causes are diverse. This case illustrates the fact that vision problems may also be the first manifestation of a neurodegenerative disorder. CASE DESCRIPTION: A 46-year-old male developed progressive, incapacitating vision problems. Multiple pairs of glasses with lenses of different strengths did not improve symptoms. No ophthalmological explanation of the problems could be found. Oculomotor apraxia and visual extinction were seen on neurological examination. Visuoperceptual impairment was the main finding on neuropsychological examination. Impairment was also identified in visuoconstruction, memory and praxis. CONCLUSION: Cognitive problems in several areas, interference with activities of daily living, and young age of onset complete the clinical picture of presenile dementia. Posterior cortical atrophy is a spectrum of neurodegenerative disorders, characterized by progressive, incapacitating visuospatial and visuoperceptual impairment. The most prevalent underlying pathology is Alzheimer's disease. At present there is no curative therapy for posterior cortical atrophy.

Frequent occurrence of cerebral demyelination in adrenomyeloneuropathy.

OBJECTIVE: To study the frequency of additional cerebral demyelination in Dutch patients with adrenomyeloneuropathy (AMN). METHODS: Consecutive patients with AMN from the Dutch X-linked adrenoleukodystrophy cohort without cerebral demyelination on MRI at inclusion, seen between January 1, 1992, and January 1, 1999, were included. Primary endpoints were brain involvement, death, or the end of follow-up on January 1, 2011. Three levels of certainty were used for cerebral demyelination: (1) signs and symptoms reported by relatives and treating physicians, confirmed by brain MRI; if follow-up MRIs were not available, (2) based upon information from treating physicians and relatives, and (3) based upon information obtained from relatives only. Results were compared with a study published in 2001, in which 13/68 (19.1%) patients with AMN developed cerebral demyelination in 9.5 ± 5.5 years. Differences of the proportions of patients with cerebral demyelination and their 95% confidence intervals (CIs) were calculated. RESULTS: Of 27 patients with AMN, 17 (63%) developed cerebral demyelination 10.2 ± 6.9 years after onset of myelo(neuro)pathy. Mean survival was 3.4 ± 2.9 years. Brain involvement was higher in Dutch patients with AMN (difference 44%, 95% CI 0.23-0.64). CONCLUSIONS: Cerebral demyelination in AMN may be more frequent than previously reported. Survival is as poor as in childhood cerebral adrenoleukodystrophy. Therapies that can halt cerebral demyelination in these patients are needed.