Ph.d., Post.doc.
Christina Egmose Frandsen
Department of Nephrology, Odense University Hospital. Department of Clinical Research, University of Sourthern Denmark
| Project management | ||
| Project status | Open | |
| Data collection dates | ||
| Start | 01.04.2025 | |
| End | 31.03.2029 | |
Digital solution to support Advance Care Planning for patients with chronic kidney disease and their families (DIT-ACP)
Short summary
DIT-ACP is a research program that aims to co-design a new digital solution for adults with chronic kidney disease in stage 3-4 and their relatives to support advance care planning conversations. This is to improve the awareness of current and future healthcare needs for patients, family members, and healthcare professionals, as well as the active involvement, and the individualized and family-centered care.
Rationale
Advance care planning (ACP) is recommended for patients with chronic kidney disease (CKD) and is appropriate at all stages of the disease (Sudore et al, 2017). There is evidence of the importance of initiating ACP early in the disease trajectory of patients with CKD (Frandsen et al., 2021). The research team of this current study has developed an ACP communication intervention to patients with CKD stage 3-4 (not receiving dialysis or kidney transplanted) (Frandsen et al., 2023), which has been tested and evaluated (Publication in review in Journal of Renal Care). The results show that being prepared for ACP consultations is important to patients, informal caregivers and healthcare professionals when having dialogue related to decision-making and self-management of complex disease symptoms (Publication in review in Journal of Renal Care). The DIT-ACP programme aims to co-design and test the validity, usability and acceptability of a high-quality Digital Instrument for adulTs with stage 3-4 (not receiving dialysis or transplanted (Levey et al. 2020) and their informal caregivers to support preparation before ACP consultation, alongside with healthcare professionals. Based on the complex intervention framework, through two studies, the research team will develop, feasibility test and evaluate a digital preparation instrument based on supportive care.
Description of the cohort
The programme is anchored at Odense University Hospital in the nephrology outpatient clinic. In total, this involves about 5000 patients with CKD 3-4 and their family members.
Collaborating researchers and departments
Professor Hanne Agerskov, Department of Nephrology, Odense University Hospital and Department of Clinical Research, University of Southern Denmark. Postdoctoral nurse Bettina Trettin, Department of Dermatology, Odense University Hospital and Department of Clinical Research, University of Southern Denmark. Professor Anette Grønning, Department of Design, Media, and Educational Science, University of Southern Denmark