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To explore whether routine electronic healthcare records can be used to identify triggers for initiating advance care planning (ACP) and the optimal time window to initiate ACP. We aimed to assess the prevalence of triggers for initiating ACP as defined for use in routine data, whether their presence is associated with death, and what their position is relative to a previously identified ‘optimal time window for ACP’.
Nested case-control study within a large dynamic population cohort dataset.
Primary care population-based, anonymised data extracted from GP centres in the South Holland province, The Netherlands.
We selected records of individuals aged ≥65 registered with their general practice from 1 Jan 2014 to 1 Jan 2017. Cases were individuals who died between 1 Jan 2017 and 1 Jan 2020. Controls were individuals who remained alive. Cases were matched by age to controls in a 1:4 ratio.
Outcomes include prevalence of triggers for ACP in the records of deceased and living individuals; association of the triggers’ presence with death; timing of the identified triggers in deceased individuals relative to the ‘optimal time window for ACP’.
We included 17098 records, 4139 from deceased individuals (mean age 81) and 12959 from living individuals (mean age 79). Triggers most strongly associated with death were consultations concerning malignancy (OR 8.35, 95% CI 7.42 to 9.41), hospital admissions (OR 7.32, 95% CI 6.75 to 7.94), emergency department referrals (OR 7.11, 95% CI 6.52 to 7.75), registered home visits (OR 5.97, 95% CI 5.51 to 6.47), consultations concerning heart failure (OR 5.25, 95% CI 4.59 to 5.99), dementia (OR 4.75, 95% CI 3.99 to 6.56), opioid prescriptions (OR 4.58 (4.25–4.93), consultations concerning general decline/feeling old (OR 4.15, 95% CI 3.72 to 4.64) and skin ulcers/pressure sores (OR 4.04, 95% CI 3.55 to 4.61). Those closest to the median of the optimal time window for ACP were consultations regarding dyspnoea, general decline/feeling old, heart failure, skin ulcers/pressure sores and fever, opioid prescriptions, emergency department referrals, registered home visits and hospital admissions.
Clinical triggers for initiating ACP in general practice can be recognised within the routine electronic health records and they align well with the ‘window of opportunity’ to initiate ACP.
To describe the co-creation of the ‘Desired Dementia Care Towards End of Life’ (DEDICATED) approach to improve person-centred palliative care for individuals with dementia and to describe the experiences of healthcare professionals during the approach's implementation.
A needs assessment, comprising both qualitative and quantitative studies, informed palliative care needs of healthcare professionals, family caregivers and individuals with dementia. The approach was co-created with healthcare and education professionals, guided by the findings. Then, healthcare professionals were trained to implement the approach in their organizations. From April to June 2022, semi-structured interviews with actively engaged professionals were analysed using Conventional Content Analysis.
The needs assessment yielded six key themes: (1) raising palliative care awareness, (2) familiarization with a person with dementia, (3) communication about future care preferences, (4) managing pain and responsive behaviour, (5) enhancing interprofessional collaboration in advance care planning and (6) improving interprofessional collaboration during transitions to nursing homes. Interviews with 17 healthcare professionals revealed that active involvement in co-creating or providing feedback facilitated implementation. Overall, the DEDICATED approach was perceived as a valuable toolkit for optimizing palliative care for people with dementia and their loved ones.
Co-creating the DEDICATED approach with healthcare professionals facilitated implementation in daily practice. The approach was considered helpful in enhancing person-centred palliative dementia care.
This study underscores the importance of active involvement of healthcare professionals in the research and development of new interventions or tools for palliative care, which can influence the successful implementation, dissemination and sustained usage of the developed tools.
The developed approach can improve person-centred palliative care for individuals with dementia, ultimately improving their quality of life and that of their loved ones.
This study used the Consolidated Criteria for Reporting Qualitative Research.
No patient or public contribution.
There are substantial barriers to initiate advance care planning (ACP) for persons with chronic-progressive disease in primary care settings. Some challenges may be disease-specific, such as communicating in case of cognitive impairment. This study assessed and compared the initiation of ACP in primary care with persons with dementia, Parkinson’s disease, cancer, organ failure and stroke.
Longitudinal study linking data from a database of Dutch general practices’ electronic health records with national administrative databases managed by Statistics Netherlands.
Data from general practice records of 199 034 community-dwelling persons with chronic-progressive disease diagnosed between 2008 and 2016.
Incidence rate ratio (IRR) of recorded ACP planning conversations per 1000 person-years in persons with a diagnosis of dementia, Parkinson’s disease, organ failure, cancer or stroke, compared with persons without the particular diagnosis. Poisson regression and competing risk analysis were performed, adjusted for age, gender, migration background, living situation, frailty index and income, also for disease subsamples.
In adjusted analyses, the rate of first ACP conversation for persons with organ failure was the lowest (IRR 0.70 (95% CI 0.68 to 0.73)). Persons with cancer had the highest rate (IRR 1.75 (95% CI 1.68 to 1.83)). Within the subsample of persons with organ failure, the subsample of persons with dementia and the subsample of stroke, a comorbid diagnosis of cancer increased the probability of ACP. Further, for those with organ failure or cancer, comorbid dementia decreased the probability of ACP.
Considering the complexity of initiating ACP for persons with organ failure or dementia, general practitioners should prioritise offering it to them and their family caregivers. Policy initiatives should stimulate the implementation of ACP for people with chronic-progressive disease.
Various instruments exist for assessing agitation and broader non-cognitive symptoms in dementia (NCSD). However, the feasibility and practicality of using these instruments in residential settings with people with advanced dementia have not been evaluated. The aim of our review is to identify the available evidence regarding tools for measuring (1) Agitation and (2) NCSD in people with advanced dementia in residential settings, in terms of use (feasibility and psychometric properties) in this population.
Literature searches will be carried out in Medline, Embase, CINAHL, PsycInfo, Scopus, Cochrane Database of Systematic Reviews and Cochrane Central Register of Controlled Trials. Grey literature databases and relevant websites will also be explored for guidance documents, task reports, etc. A three-stage screening process will be adopted and will include pilot testing of source selectors. Two reviewers will independently perform title and abstract screening, then full text screening, against the defined eligibility criteria. This scoping review protocol was registered with Open Science Framework (https://osf.io/p7g86).
Due to the nature of the scoping review, ethical approval is not required. Results will be disseminated in a peer-reviewed journal and at international conferences.
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