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The aim of this research is to test the acceptability and feasibility of a shared decision making intervention and a patient decision aid to support patients with kidney failure, relatives, and health professionals in planning and deciding about end-of-life care together.
The objectives of this study is to pilot test an intervention aiming to accomplish shared decision making when deciding about end-of-life care preferences in people with kidney failure. The intervention consists of shared decision making consultations for adults with kidney failure their relatives and contact health professionals regarding end-of-life care planning supported by a patient decision aid. We will evaluate how adults, relatives and, health professionals implements the intervention and if the intervention is acceptable to the different stakeholders. The research question will investigate if the adults, relatives, and health professionals are experiencing the intervention as shared decision making and if they feel involved in the decision making process.
The DESIRE trial is designed as a pragmatic, pilot, randomized, controlled, non-blinded multicenter superiority trial with two parallel groups will test the acceptability and feasibility of the intervention on patients, relatives, and health professionals. Randomization will be performed as block randomization with a 1:1 allocation.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Intervention group | Experimental | The DESIRE intervention which includes training of health professionals, a conversation with patients and their relatives, and a patient decision aid. |
|
| Control group | Active Comparator | Usual care |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Shared decision making intervention for patients with kidney failure when planning end-of-life care | Other | Testing a shared decision making intervention and a patient decision aid for patients with kidney failure, their relatives, and the health professionals. |
| Measure | Description | Time Frame |
|---|---|---|
| change in the patient's palliative care needs | The primary outcome will be the change in the adults' palliative needs, as measured using the Integrated Palliative Outcome Score (IPOS)-Renal patient version questionnaire | Through study completion, an average of 6 months |
| Measure | Description | Time Frame |
|---|---|---|
| Participants and relatives' experiences of shared decision making and health professionals' conduction of shared decision making are secondary outcomes. | Participants and relatives' experiences of shared decision making, as measured using the Patient Experience of Shared Decision Making (SHARED) tool and healthprofessionals' conduction of shared decision making, as measured using the Decision Support Analysis Tool (DSAT-10) are secondary outcomes. |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Louise Engelbrecht Buur | University of Aarhus | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Aarhus University Hospital | Aarhus | 8200 | Denmark |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 39221228 | Derived | Buur LE, Bekker HL, Sondergaard H, Kannegaard M, Madsen JK, Khatir DS, Finderup J. Feasibility and acceptability of the ShareD dEciSIon making for patients with kidney failuRE to improve end-of-life care intervention: A pilot multicentre randomised controlled trial. Int J Nurs Stud Adv. 2024 Aug 5;7:100231. doi: 10.1016/j.ijnsa.2024.100231. eCollection 2024 Dec. |
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The DESIRE trial is designed as a pragmatic, pilot, randomized, controlled, non-blinded multicenter superiority trial with two parallel groups will test the acceptability and feasibility of the intervention on patients, relatives, and health professionals.
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An independant research assistant will type the answers into Excel. The study principal investigator will conduct the data analyses and will be blinded to the identity of the participants only knowing them by their unique number.
| Through study completion, an average of 6 months |
| ID | Term |
|---|---|
| D051437 | Renal Insufficiency |
| D003643 | Death |
| ID | Term |
|---|---|
| D007674 | Kidney Diseases |
| D014570 | Urologic Diseases |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
| D000091642 | Urogenital Diseases |
| D052801 | Male Urogenital Diseases |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
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