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Palliative care needs experienced by Danish patients with end-stage kidney disease
Julie Boje1, Jens Kristian Madsen1, Jeanette Finderup1,2
1Department of Renal Medicine, Aarhus University Hospital, Aarhus, Denmark.
Background:
Patients with end-stage kidney disease (ESKD) may have palliative care needs. A tool validated in a Danish context to identify such needs is lacking. The Integrated Palliative Outcome Scale-Renal (IPOS-Renal) aims to identify patients' palliative care needs. The current study is the first phase of a research project translating and validating the IPOS-Renal into Danish.
Objectives:
To investigate palliative care needs among Danish patients with ESKD.
Design:
A literature review was conducted using meta-ethnography inspired by Noblit and Hare. A focus group with health care professionals (HCPs) and semi-structured individual patient interviews were conducted and analysed using Malterud's principles of systematic text condensation.
Results:
A synthesis of 15 studies, a focus group with 13 HCPs, and interviews with nine patients were conducted. We found that patients with ESKD experienced several symptoms related to physical, social, mental and existential and practical needs. The most prominent findings were fatigue, reduced physical functioning, dizziness, impaired memory, dependency on relatives or HCPs, social isolation and loss of identity.
Conclusion:
The palliative care needs identified in the Danish patient population are substantiated by the IPOS-Renal questionnaire. However, some Danish patients also appear to struggle with dizziness and impaired memory. These symptoms do not appear specifically in the IPOS-Renal questionnaire but may have to be included in a Danish version.
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