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

NCT05991726 | Completed Results DMC

• 1 other identifier: 33721
• Study Type: observational
• Target: 140
• Locations: 1 country
• Sites: 1

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.

Conditions

Chronic Kidney Diseases

Keywords

Survey; Chronic Kidney disease; Stakeholder

Outcome Measures

Primary Outcomes (3)

• 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

Study Arms (2)

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

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

Interventions

Other: Survey OTHER

Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD

Cohort 1: Professional Expert; Cohort 2: Non-Professional Expert

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• 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

You may qualify if:

• 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

You may not qualify if:

• Any participant residing outside of the UK

Sponsors & Collaborators

• University of Leicester: lead

Study Sites (1)

University of Leicester

Leicester, LE1 7RH, United Kingdom

Location

MeSH Terms

Conditions

Renal Insufficiency, Chronic

Condition Hierarchy (Ancestors)

Renal Insufficiency; Kidney Diseases; Urologic Diseases; Female Urogenital Diseases; Female Urogenital Diseases and Pregnancy Complications; Urogenital Diseases; Male Urogenital Diseases; Chronic Disease; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Results Point of Contact

• Title: Naeema Patel
• Organization: University of Leicester

nap20@leicester.ac.uk

+44 (0)116 223 6425

Publication Agreements

• PI is Sponsor Employee: Yes

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: August 7, 2023
• First Posted: August 15, 2023
• Study Start: May 5, 2022
• Primary Completion: April 3, 2023
• Study Completion: April 3, 2023
• Last Updated: April 30, 2026
• Results First Posted: April 30, 2026

Record last verified: 2026-01

Locations

GB (1)