A Delphi Survey for Key Stakeholders to Identify Priority Self-management Outcomes for Chronic Kidney Disease

University of Leicester

Status: Completed

Conditions: Chronic Kidney Diseases

Treatments: Other: Other: Survey

Study type: Observational

Funder types: Other

Identifiers

NCT05991726

33721

Details and patient eligibility

About

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.

Full 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

Enrollment: 140 patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

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

Trial design

140 participants in 2 patient groups

Cohort 1: Professional Expert

Description:

This includes Healthcare professionals (HCPs) who look after people with CKD in the UK, anyone involved in designing, developing, managing and commissioning of CKD healthcare in the UK and researchers interested in self-management or CKD

Treatment:

Other: Other: Survey

Cohort 2: Non-Professional Expert

Description:

People living with a diagnosis of CKD. This survey focusses on people with non-dialysis CKD, typically stages 3-4. However, this study does 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. This will also include 'significant others' whom are supporters or carers of people with CKD such as a family member or a partner of a person with CKD.

Treatment:

Other: Other: Survey