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

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)

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.

Study Overview

• Status: Completed
• Conditions: Chronic Kidney Diseases
• Intervention / Treatment: Other: Other: Survey

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

• Study Type: Observational
• Enrollment (Actual): 140

Contacts and Locations

Study Locations

• United Kingdom
  • Leicester, United Kingdom, LE1 7RH
    • University of Leicester

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: Yes

• 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

Description

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

Study Plan

How is the study designed?

Number of groups / cohorts

2

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Cohort 1: Professional Expert; 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	Other: Other: Survey; Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD
Cohort 2: Non-Professional Expert; This stakeholder group comprised individuals living with chronic kidney disease (CKD) and informal caregivers (e.g., family members or significant others). Caregivers were not analyzed as a separate study arm due to the small number enrolled and overlap in roles, as some participants with CKD also identified as caregivers. For analytic purposes, responses were therefore combined into a single pre-specified stakeholder category representing lay or non-professional expertise. This combined reporting approach reflects established methodology in CKD Delphi studies, including those conducted by the Standardised Outcomes in Nephrology (SONG) initiative. This grouping does not represent an additional intervention or control arm, but rather a stakeholder classification used solely for descriptive and consensus analyses.	Other: Other: Survey; Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Open Ended Free Text Question (Identifying Stakeholder Views on the 3 Most Important Outcomes for Self-management)	Round 1- Participants are asked to describe the 3 most important outcomes for self-management in people with non-dialysis CKD from their own perspective or opinion	Between 3 to 6 month
Consensus Rating (Rating Each Item for Importance)	Round 2- Participants are asked to rate each item on a 9 point Likert-type scale, ranging from 1 (not important) to 9 (critically important). Higher scores indicate greater perceived importance of the item. Items were analysed individually; no total or subscale scores were calculated. For each item, the distribution of ratings and mean score were computed. Consensus was predefined as at least 70% of participants rating an item between 7 and 9 (critical importance), or a mean score of ≥7. Items not meeting this threshold were removed in subsequent Delphi rounds.	Between 3 to 6 month
Consensus Ranking (Ranking Items to Identify Top 3 Items)	Round 3- Participants are asked to rank each item and themes in order from high to low importance to identify the most valued outcomes	Between 3 to 6 month

Collaborators and Investigators

• Sponsor: University of Leicester

Study record dates

Study Major Dates

• Study Start (Actual): May 5, 2022
• Primary Completion (Actual): April 3, 2023
• Study Completion (Actual): April 3, 2023

Study Registration Dates

• First Submitted: August 7, 2023
• First Submitted That Met QC Criteria: August 7, 2023
• First Posted (Actual): August 15, 2023

Study Record Updates

• Last Update Posted (Actual): April 30, 2026
• Last Update Submitted That Met QC Criteria: April 9, 2026
• Last Verified: January 1, 2026

More Information

Terms related to this study

• Keywords: Survey; Chronic Kidney disease; Stakeholder
• Additional Relevant MeSH Terms: Urogenital Diseases; Pathologic Processes; Male Urogenital Diseases; Kidney Diseases; Urologic Diseases; Female Urogenital Diseases; Female Urogenital Diseases and Pregnancy Complications; Chronic Disease; Disease Attributes; Renal Insufficiency; Pathological Conditions, Signs and Symptoms; Renal Insufficiency, Chronic
• Other Study ID Numbers: 33721

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No