Clinical-quality registers in dementia care: a scoping review and mapping of registers for improving quality of care and service delivery

Research area: HTA-methods & steering instruments

Duration: April 2022 – November 2022
Language: English with German summary

Publication: HTA Project Report N0. 150: https://eprints.aihta.at/1419/

Background: Dementia is a syndrome resulting mostly from chronic or progressive cortical and subcortical neurodegeneration. Dementias are characterized by cognitive impairment, impaired emotional control and limited daily living skills [1]. The common causes and forms of dementia are Alzheimer’s diseases (AD), vascular dementias, psychiatric diseases, and other neurodegenerative diseases, including frontotemporal dementia and Lewy body dementia [2, 3]. The 2017 World Health Organization (WHO) report on the ‘Global Action Plan on the Public Health Response to Dementia’ emphasized that more and more people are affected, directly or indirectly, and that the complexity of this condition requires public health action involving multiple stakeholders [4]. Also in Austria in 2015, the necessity for joint action with regard to dementia was acknowledged by the Ministry of Health leading to the commissioning of a dementia strategy (‘Living Well with Dementia’) that lays the foundations on how to best support people affected by dementia, their families and friends [5].

Currently, the key pillars of treatment is symptomatic management and psychosocial care for the affected person and their relatives. In recent years, several countries have introduced clinical-quality registers (CQR) for dementia care, with Scandinavian countries among the first to implement such registers [6]. CQRs are perceived to be one instrument to better support, monitor, and improve the quality of dementia care. The utilisation of CQRs and the collected data allow for the development of clinical quality indicators (CQIs) to ensure the quality and efficiency of dementia care by highlighting variations in clinical processes and outcomes while ensuring equitable access to dementia care services. CQRs in general and CQIs in particular need to be based on scientific evidence, patient and caregiver experience, and clinician perspectives across the continuum of care from diagnosis to end of life. Then CQRs do not only provide benefits for people directly affected by dementia but also their caregivers and relatives [7].

However, the transferability of the know-how on CQRs and the associated aspects, even if perceived as a good practice model, to the Austrian health care system are not necessarily given. Since CQRs should aid to inform health care planners and decision-makers in their efforts to develop and organise dementia care, the specific institutional, organisational/structural, and epidemiological context is essential to consider when planning and implementing a CQR. These aspects substantially vary across countries and need to be taken into account when setting up a register.

Objectives: The report aims to give an overview of existing and planned[1] CQRs in dementia care. The main focus is on registers that are intended to be used for monitoring outcomes and improving the quality of dementia care while assuring an equitable access to health care services. We will compile commonalities and differences of identified CQRs in terms of the current use of such registers, organisational, implementation, and technical aspects. Aspects of interest include, for example, aims and intentions of the CQR, the operating authority or organisation, ownership of the data, setting and necessary staff for data collection and management, financing, necessary investments, and necessary input resources, target population or types of dementia considered, diagnostic system used, type of data and type of consent.

Another main aim of the report is to identify the data collected by operators of CQRs such as personal characteristics of the person with dementia such as present co-morbidities, diagnostic work-up, treatment and care data, and other required input resources (e.g. minimum data set). In addition, we will analyse outputs or information that operators and implementers derive from the collected data. Clinical quality indicators (CQIs) and outcome parameters, which are used to monitor and evaluate the structural-, process- and outcome-quality of dementia care, play a special role.

Furthermore, we will discuss identified commonalities and differences in terms of ethical, legal, and socio-economic implications (ELSIs), and results from (potentially identified) CQR evaluation reports. The report is intended to serve as a basis for decision makers to implement an Austria-wide clinical quality register for dementia care planning and quality control, which is consistent with and complements the Austrian dementia strategy. Therefore, we will embed the findings and implications in the Austrian health care context.

Non-objectives:

The report does not…

• cover other types of dementia registers such as (preclinical) research registers, drug/device registers, research volunteer registers, and disease/condition or epidemiological registers. Although many registers overlap in terms of the stated purposes, the report focuses on registers that primarily serve purposes of a CQR.
• systematically assess the effectiveness or evaluate the quality of different CQRs.
• develop an Austrian CQR for dementia, provide concrete guidance on the implementation process, or will develop specific CQIs.

Research questions:

The following research questions (RQ) will guide the report:

1. Which implemented or planned CQRs exist and what are common characteristics and differences in terms of the current use of such registers, organisational, implementation, and technical aspects?
2. What data are collected in the course of these registers, and what indicators or outcome parameters can be derived from the data collected regarding the structural-, process-, and outcome-quality of dementia care?
3. Which ethical, legal, and socio-economic implications (ELSIs) have to be considered before implementing an Austrian-wide CQR?

Methods:
RQ1 and RQ2: Scoping review and mapping of existing and planned national and subnational CQRs and registers, which are intended to be used for monitoring outcomes and improving the quality of dementia care.

• Identifying CQRs 1: Hand search in relevant databases (PubMed, TRIP database etc.), meta-search engines, and searches on websites of governmental and non-governmental health and public health institutions (NICE, WHO etc.) according to the pre-specified PICo scheme[2]
• Identifying CQRs 2: Update of already existing (systematic) reviews and reports on CQRs for dementia
• Tabulation of organisational, technical, and implementation aspects, tabulation and analysis of collected data types, and mapping of derived inferences such as potential CQIs and outcome parameters to monitor and evaluate the structural-, process- and outcome-quality of dementia care from pre-diagnosis to patient outcomes
• Narrative synthesis of gathered information and discussion of results of RQ1 and RQ2
• If applicable, contacting implementers and operators of CQRs

RQ3: Analytical elaboration of implications from the identified CQR information for the Austrian context and Austrian dementia strategy

• Identification and discussion of relevant ELSIs and summary of the identified CQR evaluation report results
• Narrative embedding in the Austrian context and the Austrian dementia strategy

PICo analysis guiding the report:

Population/ Problem	Patients with dementia according to ICD-10 [8]: (F00-F03) ‘Dementia (F00-F03) is a syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not clouded. The impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation. This syndrome occurs in Alzheimer disease, in cerebrovascular disease, and in other conditions primarily or secondarily affecting the brain.’
Interest	The report is interested in clinical-quality registers for dementia care with the focus on the following aspects: Commonalities and differences of existing and planned CQRs in terms of the current use of such registers, organisational, implementation, and technical aspects Data collected by CQR operators and derived implications thereof such as used CQIs to monitor and evaluate the structural, process, and outcome quality of dementia care The significance of the findings for the Austrian dementia context Non-interests: Other types of dementia registers and registers with restricted local coverage (hospital/clinic-based registers), systematically evaluate/appraise effectiveness or quality of CQRs, give instructions on the implementation process or develop CQIs
Context	Countries with upper to high incomes and a comparable health care system to Austria
Language	English/German or translation of reports in other languages
Type of publication	Any kind of publication
Time period	Update of previous and existing systematic reviews and reports beginning from 2016

The workflow is organised according to the principle of triple control (CS, LG, AP), and the results are subject to internal and external reviewers.

Schedule and milestones:

Time period	Task
April – 13 May 2022	Scoping, project protocol
13 May 2022	Milestone 1: Upload project protocol/start of the project
13 May – 30 June 2022	Milestone 2: Relevant literature on CQRs is identified Hand search for CQRs, CQIs, and guidelines for dementia care is conducted Contacting operators of implemented CQRs (if necessary) Literature is identified
30 June –  31 July 2022	Processing of RQ1 and RQ2 - Scoping review and mapping of CQRs Tabular presentation and description of identified literature and CQRs Analysis of collected data and derived inferences by CQR operators (used CQIs etc.)
31 July – 1 October 2022	Processing of RQ3 – Localisation of the identified CQR evidence in the Austrian dementia context Identification and discussion of relevant ELSIs and summary of potential evaluation report results Narrative embedding in the Austrian context and the Austrian dementia strategy
1 October – 10 October 2022	Milestone 3: Continuous text is written and wrap-up of all parts
10 – 14 October 2022	Finalisation
14 October 2022	Internal review
19 October 2022	External review
4 November 2022	Milestone 4: Quality assurance is completed
10 November 2022	Layout
14 November 2022	Milestone 5: Publication of the report

References:

[1]     Lücke C. and Rüther L. Demenz. Pschyrembel online: 2022 [cited 26/04/2022]. Available from: https://www.pschyrembel.de/demenz/K05MH/doc/.

[2]     Heim T. M. Alzheimer-Demenz. Deximed - Hausarztwissen online: 2021 [cited 26/04/2022]. Available from: https://deximed.de/home/klinische-themen/geriatrie/krankheiten/demenzerkrankungen/alzheimer-demenz#.

[3]     Press D. and Alexander M. Prevention of dementia. UpToDate: 2020 [cited 26/04/2022]. Available from: https://www.uptodate.com/contents/prevention-of-dementia?search=dementia&source=search_result&selectedTitle=19~150&usage_type=default&display_rank=19

[4]     World Health Organisation (WHO). Global action plan on the public health response to dementia 2017-2025. Geneva: World Health Organisation, Licence: CC BY-NC-SA 3.0 IGO: 2017 [cited 15/04/2022]. Available from: https://www.who.int/publications/i/item/global-action-plan-on-the-public-health-response-to-dementia-2017---2025.

[5]     Bundesministerium für Soziales, Gesundheit, Pflege und Konsumentenschutz (BMSGPK). Dementia strategy - Living well with dementia. 2015 [cited 15/04/2022]. Available from: https://www.demenzstrategie.at/fxdata/demenzstrategie/prod/media/Demenzstrategie_Neu_englisch.pdf.

[6]     Krysinska K., Sachdev P. S., Breitner J., Kivipelto M., Kukull W. and Brodaty H. Dementia registries around the globe and their applications: A systematic review. Alzheimers Dement. 2017;13(9):1031-1047. Epub 2017/06/04. DOI: 10.1016/j.jalz.2017.04.005.

[7]     Ayton D., Gardam M., Ward S., Brodaty H., Pritchard E., Earnest A., et al. How Can Quality of Dementia Care Be Measured? The Development of Clinical Quality Indicators for an Australian Pilot Dementia Registry. J Alzheimers Dis. 2020;75(3):923-936. Epub 2020/05/12. DOI: 10.3233/jad-191044.

[8]     World Health Organisation (WHO). ICD-10 Version: 2019. 2019 [cited 17/04/2022]. Available from: https://icd.who.int/browse10/2019/en#/F00.