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.
Little research has been done on post-COVID symptoms at 24 months postinfection and on the association these may have on health-related quality of life (HRQOL).
We assessed the prevalence and severity of post-COVID symptoms and quantified EuroQol 5 Dimension 5 Level (EQ-5D-5L), self-perceived health question (EuroQol Visual Analogue Scale (EQ-VAS)) and health utility scores (HUS) up to 24 months follow-up.
The longitudinal multiple cohort CORona Follow-Up (CORFU) study combines seven COVID-19 patient cohorts and a survey among the general public. The participants received questionnaires on several time points. Participants were stratified by: without a known SARS-CoV-2 infection (control group), proven SARS-CoV-2 infection but non-hospitalised, proven SARS-CoV-2 infection hospitalised to the ward, and proven SARS-CoV-2 infection hospitalised to the intensive care unit (ICU).
In this study, data of seven COVID-19 patient cohorts and a survey among the general public are included.
Former COVID-19 patients and controls participated in this cohort study.
Former COVID-19 patients and non-COVID-19 controls were sent questionnaires on symptoms associated with post-COVID condition. The CORFU questionnaire included 14 symptom questions on post-COVID condition using a five-level Likert-scale format. Furthermore, HRQOL was quantified using the EuroQol EQ-5D-5L questionnaire: EQ-VAS and the EQ-5D-5L utility score. The EQ-5D-5L questionnaire includes five domains that are scored on a five-point Likert scale: mobility, self-care, usual activities, pain/discomfort and anxiety/depression.
A total of 901 participants (and 434 controls) responded at 24 months follow-up. In all former COVID-19 patients, the presence of post-COVID condition at 24 months was observed in 62 (42.5%, 95% CI 34.3% to 50.9%) of the non-hospitalised patients, 333 (65.0%, 95% CI 60.7% to 69.2%) of the hospitalised ward patients and 156 (63.2%, 95% CI 56.8% to 69.2%) of the ICU patients, respectively (p
Many former COVID-19 patients experience post-COVID symptoms at 24 months follow-up, with the highest prevalence in hospitalised participants. Also, former patients reported a lower HRQOL.
The CORFU study was registered at clinicaltrials.gov (registration number NCT05240742).