Clinical trial NCT05991726: A Delphi Survey for Key Stakeholders to Identify Priority Self-management Outcomes for Chronic Kidney Disease
Official title: Taking an Active Role in Your Own Healthcare: A Delphi Survey for Key Stakeholders to Identify Priority Self-management Outcomes for Chronic Kidney Disease (SM-CKD Delphi Study)
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Chronic Kidney Diseases
Keywords: Survey
Chronic Kidney disease
Stakeholder
Lead sponsor: University of Leicester
Sponsor class: OTHER
First posted: 2023-08-15
Enrollment: 140
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: OTHER
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: 1. People living with CKD. This survey focusses on people with non-dialysis CKD, typically stages 3-4. However, we will not exclude participation by those at a more advanced stage or receiving renal replacement therapy (dialysis or transplant) as these people also have lived experience of earlier stages to draw on.
2. Carers and Supporters of people with CKD (expected to be a significant other i.e. spouse or partner, close family member or friend that are involved in the regular care and support to a person living with CKD)
3. Healthcare professionals (HCPs) who look after people with CKD in the UK
4. Anyone involved in designing, developing, managing and commissioning of CKD healthcare in the UK
5. Researchers interested in self-management or CKD

Brief summary: The purpose of this Delphi study is to identify priority outcomes for self-management in earlier (non-dialysis) stages of CKD from the perspectives of different stakeholder groups in the UK. The findings of this study will be used to inform outcome measure selection for research and clinical evaluations of self-management resources and to support implementation, commissioning and uptake.

Detailed description: Chronic Kidney Disease (CKD) is a progressive condition affecting more than 1.8 million people in England

Effective self-management is important for people living with CKD like many Long-Term Conditions. Self-management in its broadest term can be summarised as individuals participating in the day-to-day management of their chronic condition

Theory- and evidence-based tools and resources for self-management education and support are required to encourage health-promoting behaviours. However, outcomes valued by key stakeholders are necessary to ensure robust evaluation in research settings and clinical practice

A Delphi study is carried out to generate consensus on outcomes that are valued by the stakeholder groups in this study. The Delphi study will undergo 3-4 survey rounds

Adult CKD patient participants living in the UK and their significant others were recruited via social media adverts shared by our research team and English kidney community organisations. Healthcare professionals, commissioners and policymakers (professional groups) based in the UK were recruited by direct email invitations to our extensive contacts in the field

Eligibility criteria: Inclusion Criteria:

* People with diagnosis of CKD in the UK
* Their close family and friend
* Healthcare professionals who look after people with CKD in the UK
* Anyone involved in designing, developing, managing and commissioning CKD healthcare services in the UK
* Researchers related in a topic related to self-management or CKD

Exclusion Criteria:

* Any participant residing outside of the UK

Primary outcomes:
measure: Open ended free text question
timeFrame: Between 3 to 6 month
measure: Consensus Rating
timeFrame: Between 3 to 6 month
measure: Consensus Ranking
timeFrame: Between 3 to 6 month
Secondary outcomes:
Other outcomes:
Locations:
city: Leicester
country: United Kingdom
facility: University of Leicester
Study officials:
References: