scholarly journals The protocol of a clinical quality registry for dementia and mild cognitive impairment (MCI): the Australian dementia network (ADNeT) Registry

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Xiaoping Lin ◽  
Kasey Wallis ◽  
Stephanie A. Ward ◽  
Henry Brodaty ◽  
Perminder S. Sachdev ◽  
...  

Abstract Background Dementia was identified as a priority area for the development of a Clinical Quality Registry (CQR) in Australia in 2016. The Australian Dementia Network (ADNeT) Registry is being established as part of the ADNeT initiative, with the primary objective of collecting data to monitor and enhance the quality of care and patient outcomes for people diagnosed with either dementia or Mild Cognitive Impairment (MCI). A secondary aim is to facilitate the recruitment of participants into dementia research and trials. This paper describes the Registry protocol. Methods The ADNeT Registry is a prospective CQR of patients newly diagnosed with either dementia or MCI. Eligible patients will be identified initially from memory clinics and individual medical specialists (e.g., geriatricians, psychiatrists and neurologists) involved in the diagnosis of dementia. Participants will be recruited using either an opt-out approach or waiver of consent based on three key determinants (capacity, person responsible, and communication of diagnosis). Data will be collected from four sources: participating sites, registry participants, carers, and linkage with administrative datasets. It is anticipated that the Registry will recruit approximately 10,000 participants by the end of 2023. The ADNeT registry will be developed and implemented to comply with the national operating principles for CQRs and governed by the ADNeT Registry Steering Committee. Discussion The ADNeT Registry will provide important data on current clinical practice in the diagnosis, treatment and care of people with dementia and MCI in Australia as well as long-term outcomes among these people. These data will help to identify variations in clinical practice and patient outcomes and reasons underlying these variations, which in turn, will inform the development of interventions to improve care and outcomes for people with dementia and MCI.

2008 ◽  
Vol 20 (4) ◽  
pp. 697-709 ◽  
Author(s):  
Tiago Moreira ◽  
Julian C. Hughes ◽  
Thomas Kirkwood ◽  
Carl May ◽  
Ian McKeith ◽  
...  

ABSTRACTBackground: Mild cognitive impairment (MCI) is proposed to describe the transitional stage between normal cognitive aging and dementia. It has had significant impact in the field of dementia research, but it remains controversial whether or not it should be used as a diagnostic category in clinical practice.Methods: Semi-structured interviews were carried out with international experts (N = 37) in the field of dementia research and practice. These interviews explored the advantages and difficulties of using MCI as a clinical diagnosis.Results: There is wide variation in the clinical use of MCI. This variation depends on institutional factors and two types of cultural factors: (a) clinical culture, and (b) the “evidential culture” – how research and guidelines figure in clinical practice.Conclusion: The study shows the importance of combining values-based practice with evidence-based practice in the early diagnosis of dementia.


2020 ◽  
pp. 1-11
Author(s):  
Krista Tromp ◽  
Marthe Smedinga ◽  
Edo Richard ◽  
Marieke Perry ◽  
Maartje H.N. Schermer

Background: Hope for future treatments to prevent or slow down dementia motivates researchers to strive for ever-earlier diagnoses of Alzheimer’s disease (AD) based on biomarkers, even before symptoms occur. But is a biomarker-based early diagnosis desirable in clinical practice? Objective: This study explores the ethical considerations that shape current clinical practice regarding early AD diagnostics and the use of biomarkers. Methods: In this qualitative study, Dutch physicians were interviewed. Topics included physicians’ views concerning early AD diagnosis in persons with no or mild cognitive impairment, physicians’ considerations regarding current and expected future practices of early AD diagnosis, the use of biomarkers, and the use of the concepts preclinical and prodromal AD. We analyzed the transcripts using directed content analysis. Results: 15 general practitioners, neurologists, and geriatricians in the Netherlands were interviewed. Most of them interpreted an early AD diagnosis with an early diagnosis of dementia. We identified six clusters of considerations sometimes in favor but most often against pursuing an early AD diagnosis in people with no or mild cognitive impairment that influence physicians’ diagnostic decision-making: preferences and characteristics of persons, test characteristics, impact on care, type of setting, disease concepts, and issues on a societal level. Conclusion: The discussion concerning an early AD diagnosis based on biomarkers which is widely held in the scientific field, has not entered clinical practice structurally. A biomarker-based early diagnosis does not fit within Dutch physicians’ views on what good care for people with no, subjective, or mild cognitive impairment should entail.


2018 ◽  
Vol 46 (3-4) ◽  
pp. 217-228 ◽  
Author(s):  
Mona Michelet ◽  
Knut Engedal ◽  
Geir Selbæk ◽  
Anne Lund ◽  
Guro Hanevold Bjørkløf ◽  
...  

Background/Aims: A timely diagnosis of dementia is important, and the Cognitive Function Instrument (CFI) is a newly developed instrument to screen for cognitive decline. The aim of this study was to evaluate the validity and internal consistency of the Norwegian version of the CFI. Methods: We included 265 participants with dementia, mild cognitive impairment (MCI), subjective cognitive impairment (SCI), and a reference group without subjective or assessed cognitive decline. The participants and their relatives answered the self- and proxy-rated versions of the CFI. Results: The Norwegian CFI had power to discriminate between people with dementia and with MCI, SCI, and the reference group. The proxy version had better power than the self-rated version in our participants (area under the curve [AUC] proxy-rated varying from 0.79 to 0.99, AUC self-rated varying from 0.56 to 0.85). Conclusion: The Norwegian CFI was found to be a useful, valid, and robust instrument.


BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S277-S277
Author(s):  
Alexandra Nash ◽  
Jon Stone ◽  
Alan Carson ◽  
Craig Ritchie ◽  
Laura McWhirter

AimsThis study aimed to explore the terms used by old-age psychiatrists and psychologists to describe subjective and mild cognitive impairment and functional cognitive disorders (FCD) in clinical practice.MethodParticipants were selected from across the United Kingdom based on their clinical involvement in the assessment of cognitive complaints. 9 old-age psychiatrists and 4 psychologists were interviewed about their use of terminology in clinical practice and their awareness and understanding of FCD terminology via semi-structured interview questions and case vignettes. Interviews were conducted between December 2020 and February 2021 using online platforms Zoom and Microsoft Teams. Participants were recruited by email and Twitter. All questions were asked verbally; however, the four case vignettes were displayed via screen-share. All discussions and answers were transcribed and transcripts were coded manually using the exploratory case study methodology in order to identify themes in participants’ responses.ResultThis study has highlighted the variable use of terms used to describe and diagnose patients presenting with symptoms of cognitive disorders. The terms ‘mild cognitive impairment’, ‘subjective cognitive decline’ and ‘functional cognitive disorder’ were used most commonly amongst participants, though the terms ‘subjective cognitive impairment’ and ‘pseudodementia’ were also presented. This theme of language discontinuity is underscored by participants’ varying use of terminology when describing or presenting their diagnoses for the case vignettes. The data also reveals a sub-theme of variability in application of the term FCD. Whilst all participants gave similar definitions for this term, the application of FCD as a diagnosis in practice was inconsistent. Six participants described FCD as associated with or secondary to other functional or psychiatric conditions, four participants viewed FCD as an isolated diagnosis, and one participant considered FCD to be either part of another illness or a separate diagnosis. Two participants neither used nor recognised the term FCD.ConclusionIt is evident that there is varied use of terms describing or diagnosing forms of cognitive symptoms. The findings of this study highlight the need for a clear, adoptable definition of FCD in practice as well as implementable management plans for FCD patients. This is critical in order to avoid misdiagnosis and mismanagement, which may have harmful effects on patients living with debilitating cognitive symptoms.


2020 ◽  
Vol 16 (S6) ◽  
Author(s):  
Pooja Rai ◽  
Tara Singh ◽  
Indramani L. Singh ◽  
Trayambak Tiwari ◽  
Deepika Joshi

BMJ Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. e023723
Author(s):  
Liane J Ioannou ◽  
Jonathan Serpell ◽  
Joanne Dean ◽  
Cino Bendinelli ◽  
Jenny Gough ◽  
...  

IntroductionThe occurrence of thyroid cancer is increasing throughout the developed world and since the 1990s has become the fastest increasing malignancy. In 2014, a total of 2693 Australians and 302 New Zealanders were diagnosed with thyroid cancer, with this number projected to rise to 3650 in 2018. The purpose of this protocol is to establish a binational population-based clinical quality registry with the aim of monitoring and improving the quality of care provided to patients diagnosed with thyroid cancer in Australia and New Zealand.Methods and analysisThe Australian and New Zealand Thyroid Cancer Registry (ANZTCR) aims to capture clinical data for all patients over the age of 16 years with thyroid cancer, confirmed by histopathology report, who have been diagnosed, assessed or treated at a contributing hospital. A multidisciplinary steering committee was formed which, with operational support from Monash University, established the ANZTCR in early 2017. The pilot phase of the registry is currently operating in Victoria, New South Wales, Queensland, Western Australia and South Australia, with over 20 sites expected to come on board across Australia in 2018. A modified Delphi process was undertaken to determine the clinical quality indicators to be reported by the registry, and a minimum data set was developed comprising information regarding thyroid cancer diagnosis, pathology, surgery and 90-day follow-up.Future plansThe establishment of the ANZTCR provides the opportunity for Australia and New Zealand to further understand current practice in the treatment of thyroid cancer and identify variation in outcomes. The engagement of endocrine surgeons in supporting this initiative is crucial. While the pilot registry has a focus on early clinical outcomes, it is anticipated that future collection of longer term outcome data particularly for patients with poor prognostic disease will add significant further value to the registry.


2008 ◽  
Vol 25 (2) ◽  
pp. 61-65 ◽  
Author(s):  
Abraham Popoola ◽  
Maria O'Donovan ◽  
Eleanor Mullan

AbstractObjective: Dementia is a progressive brain disease. The prevalence of dementia increases with age. Symptomatic pharmacological treatments for dementia are available. Psychological and social interventions can support the patient and their carer. Early recognition and diagnosis of dementia are necessary to access this care and reduce crisis-led intervention. A memory clinic service is ideally placed to commence the assessment and management of dementia. The objective of this paper was to describe the setting up of the memory clinic in Cork University Hospital and review the characteristics of the first 118 patients.Method: One hundred and eighteen patients were assessed at the memory clinic between July 2004 and Feb 2007. In general the service operated on a two-appointment system. The first appointment was for a comprehensive assessment with investigations. The second appointment was a feedback session with discussion of the diagnosis, prognosis and management plan for the patient and generally their carer. We examined their demographic characteristics, clinical details, psychological test results and results of investigations.Results: Of the 127 patients referred, 118 (92.9%) attended. Fifteen (12.7%) patients had diagnosis of mild cognitive impairment (MCI), 93 (78.8%) patients were diagnosed with dementia and 5 (4.2%) had diagnosis of depressive disorder with no co-morbid dementia. The dementia type in descending frequency was Alzheimer's disease (50.5%), vascular dementia (34.4%), mixed type dementia (10.8%), Frontal lobe dementia (2.2%) and Lewy body type (2.2%). Of the 93 (78.8%) patients with dementia, 47 (50.5%) had MMSE score ≥20, 29 (31.2%) had MMSE score 11-19 and 17 (18.3%) had score of 0-10. Thirty-three (35.5%) patients were on antidementia medication at the point of referral and a further 16 (17.2%) patients were commenced on these drugs following assessment.Conclusion: The memory clinic provides a service for the assessment of mild cognitive impairment (MCI) and dementia. It offers diagnosis, an opportunity to receive specific advice regarding dementia management, differentiation between dementia and depression and a resource point for carers and patients.


2009 ◽  
Vol 22 (1) ◽  
pp. 56-63 ◽  
Author(s):  
Lena Ehreke ◽  
Melanie Luppa ◽  
Hans-Helmut König ◽  
Steffi G. Riedel-Heller

ABSTRACTBackground:The clock drawing test (CDT) is a common and widely used cognitive screening instrument for the diagnosis of dementia. However, it has remained unclear whether it is a suitable method to identify mild cognitive impairment (MCI). The aim of this paper is to review systematically the studies concerning the utility of the CDT in diagnosing MCI.Method:A systematic literature search was conducted. All studies dealing with utility of CDT in diagnosing MCI regardless of the applied CDT scoring system and MCI concept were selected.Results:Nine relevant studies were identified. The majority of the studies compared average CDT scores of cognitively healthy and mildly impaired subjects, and four of them identified significant mean differences. If reported, sensitivity and specificity have been mostly unsatisfactory.Conclusion:CDT should not be used for MCI-screening.


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