How dementia quality registries can contribute to better dementia care

The Austrian Institute for Health Technology Assessment (AIHTA) has investigated which key factors are essential in the planning, design, implementation and operation of so-called dementia quality registries. The AIHTA report also lays out “best practice strategies” for handling these registers by health sector decision makers.

Key findings relate to data management, governance and reporting structures, data protection and the nature of quality indicators. An important conclusion of the study is that different interdisciplinary aspects of organizational, evaluation and outcome research should be taken into account when establishing and operating a dementia quality registry.

It is estimated that 150,000 people in Austria live with dementia-related impairment. According to current forecasts, this number will double by 2050. The syndrome manifests in daily life mainly through chronic or progressive loss of nerve cell function (neurodegeneration), which gradually makes daily life more difficult for those affected – e.g. , through problems with memory, language or spatial orientation. Complexity and inefficiency require careful and, above all, an evidence-based approach with patients and all other actors involved.

AIHTA has now analyzed various dementia quality registries in a study and derived relevant quality indicators to help develop optimal dementia care pathways. In total, six national quality registries from Australia, Denmark, Ireland, Norway and Sweden were analysed, which cover a wide range of dementia types and strive for improved networking with research, in addition to the common goal of improved dementia care. Although governance structures were heterogeneous, they also shared commonalities. For example, a multi-professional steering group was one of the key elements of all dementia quality registries studied.

“These expert groups are made up of dementia care clinicians and researchers, as well as affected patients and carers, and are responsible for administrative, legal, ethical and scientific decisions,” explains Christoph Strohmeier, study leader and health economist at AIHTA. .

Differences and Similarities

In addition to governance structures, similarities emerged across registries in terms of data management. All dementia quality registries studied used the so-called minimum data set, i.e. the minimum set of common data elements that all facilities should use for standardized data collection in secondary and primary care. The number of data items collected can be divided into several categories but varies greatly between registries: for example, the Irish registry collected 56 data items, while the Swedish registry (BPSDR) had only 10 data items.

In addition to differences in quality assurance measures, data entry and validation methods, there were commonalities in data protection (for EU registries based on the DGSVO) and data use for research purposes. In addition, all identified quality registries were publicly financed because national dementia action plans or strategies form the basis for quality improvement targets based on registry data in all five countries, emphasizes study author Christoph Strohmeier of AIHTA.

Based on the minimum data set, so-called quality indicators are created in each quality registry. In most cases, these are ratio indicators intended to depict the desired quality standard in three dimensions (process, structure, outcome quality).

In most cases, these indicators are based on a consensus decision by the respective steering groups. Only two Swedish registries explicitly base their selection of quality indicators on the Swedish National Guidelines for Dementia Care. In total, the analysis identified 46 individual quality indicators from the categories of pre-diagnosis, diagnosis and diagnosis clarification, treatment and support measures, outcome-related and meta-indicators.

Framework and recommendations for practical implementation

Finally, the concluding part of the AIHTA report focuses on specific aspects of dementia quality registries that healthcare decision makers need to consider. These aspects include, for example, clarification of responsibilities and funding questions from the planning stage or strategies for recruiting patients and providers, as well as the selection of quality indicators.

“The use of large sets of quality indicators is not recommended. The focus should be on quantity rather than on evidence- and consensus-based quality. Carefully validated scales should be used to measure patient-related outcomes and quality indicators based on them,” says Christoph Strohmeier. In addition, aspects of interoperability should be considered, i.e., linkage of dementia quality registry data with other health databases should be ensured.

Ultimately, effective performance requires the collaboration of all actors involved at all levels of care—the only way to achieve quality improvement in dementia care.

Provided by the Austrian Institute for Health Technology Assessment GmbH