Trial Outcomes & Findings for A Delphi Survey for Key Stakeholders to Identify Priority Self-management Outcomes for Chronic Kidney Disease (NCT NCT05991726)
NCT ID: NCT05991726
Last Updated: 2026-04-30
Results Overview
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
Recruitment status
COMPLETED
Target enrollment
140 participants
Primary outcome timeframe
Between 3 to 6 month
Results posted on
2026-04-30
Participant Flow
Participant milestones
| Measure |
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: 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 analysed 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 in Delphi studies.
Other: Survey: Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD
|
|---|---|---|
|
Overall Study
STARTED
|
72
|
68
|
|
Overall Study
COMPLETED
|
37
|
25
|
|
Overall Study
NOT COMPLETED
|
35
|
43
|
Reasons for withdrawal
Withdrawal data not reported
Baseline Characteristics
A Delphi Survey for Key Stakeholders to Identify Priority Self-management Outcomes for Chronic Kidney Disease
Baseline characteristics by cohort
| Measure |
Cohort 1: Professional Expert
n=71 Participants
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: Survey: Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD
|
Cohort 2: Non-Professional Expert
n=64 Participants
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: Survey: Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD
|
Total
n=135 Participants
Total of all reporting groups
|
|---|---|---|---|
|
Age, Categorical
<=18 years
|
0 Participants
n=14 Participants
|
0 Participants
n=34 Participants
|
0 Participants
n=69 Participants
|
|
Age, Categorical
Between 18 and 65 years
|
70 Participants
n=14 Participants
|
56 Participants
n=34 Participants
|
126 Participants
n=69 Participants
|
|
Age, Categorical
>=65 years
|
1 Participants
n=14 Participants
|
8 Participants
n=34 Participants
|
9 Participants
n=69 Participants
|
|
Sex: Female, Male
Female
|
27 Participants
n=14 Participants
|
15 Participants
n=34 Participants
|
42 Participants
n=69 Participants
|
|
Sex: Female, Male
Male
|
44 Participants
n=14 Participants
|
49 Participants
n=34 Participants
|
93 Participants
n=69 Participants
|
|
Ethnicity (NIH/OMB)
Hispanic or Latino
|
0 Participants
n=14 Participants
|
0 Participants
n=34 Participants
|
0 Participants
n=69 Participants
|
|
Ethnicity (NIH/OMB)
Not Hispanic or Latino
|
71 Participants
n=14 Participants
|
64 Participants
n=34 Participants
|
135 Participants
n=69 Participants
|
|
Ethnicity (NIH/OMB)
Unknown or Not Reported
|
0 Participants
n=14 Participants
|
0 Participants
n=34 Participants
|
0 Participants
n=69 Participants
|
PRIMARY outcome
Timeframe: Between 3 to 6 monthPopulation: This was a qualitative part of the survey, in which participants' responses were analysed using conventional content analysis. Participants' responses produced 28 outcomes, each outcome fell into one of 5 themes, which were 'clinical', 'behaviour and self-care', 'healthcare usage', 'psychological and social factors' and 'knowledge, skills \& Confidence'. The numbers below shows the frequency of times the outcomes were mentioned in that participant group in qualitative analysis
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
Outcome measures
| Measure |
Cohort 1: Professional Expert
n=71 Participants
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: Survey: Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD
|
Cohort 2: Non-Professional Expert
n=64 Participants
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.
Other: Survey: Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD
|
|---|---|---|
|
Open Ended Free Text Question (Identifying Stakeholder Views on the 3 Most Important Outcomes for Self-management)
Clinical
|
75 items
|
42 items
|
|
Open Ended Free Text Question (Identifying Stakeholder Views on the 3 Most Important Outcomes for Self-management)
Behaviour & self-care
|
19 items
|
14 items
|
|
Open Ended Free Text Question (Identifying Stakeholder Views on the 3 Most Important Outcomes for Self-management)
Healthcare Usage
|
42 items
|
14 items
|
|
Open Ended Free Text Question (Identifying Stakeholder Views on the 3 Most Important Outcomes for Self-management)
Psychological & Social factors
|
30 items
|
25 items
|
|
Open Ended Free Text Question (Identifying Stakeholder Views on the 3 Most Important Outcomes for Self-management)
Knowledge skills and confidence
|
24 items
|
28 items
|
PRIMARY outcome
Timeframe: Between 3 to 6 monthPopulation: The participants' mean, median and proportion were calculated on the 9-point Likert scale to establish the consensus criteria. Items /outcomes scoring \>70% on 7-9 or mean of 7 or more were retained and taken forward to the following round. 25 out of 28 items were retained and 3 items were taken out as they scored below the consensus criteria
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.
Outcome measures
| Measure |
Cohort 1: Professional Expert
n=53 Participants
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: Survey: Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD
|
Cohort 2: Non-Professional Expert
n=44 Participants
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.
Other: Survey: Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD
|
|---|---|---|
|
Consensus Rating (Rating Each Item for Importance)
knowledge and understanding of how to live a healthy lifestyle
|
7.4 score on a scale
Standard Deviation 1.4
|
7.4 score on a scale
Standard Deviation 1.5
|
|
Consensus Rating (Rating Each Item for Importance)
increase self-esteem
|
7.5 score on a scale
Standard Deviation 1.5
|
7.4 score on a scale
Standard Deviation 1.5
|
|
Consensus Rating (Rating Each Item for Importance)
Feeling more able to solve problems
|
7.5 score on a scale
Standard Deviation 1.5
|
7.5 score on a scale
Standard Deviation 1.6
|
|
Consensus Rating (Rating Each Item for Importance)
Improve diet and nutrition
|
7.5 score on a scale
Standard Deviation 1.4
|
7.5 score on a scale
Standard Deviation 1.5
|
|
Consensus Rating (Rating Each Item for Importance)
weight management
|
7.3 score on a scale
Standard Deviation 1.5
|
7.4 score on a scale
Standard Deviation 1.6
|
|
Consensus Rating (Rating Each Item for Importance)
Adhering to medicines and other treatments
|
8.1 score on a scale
Standard Deviation 1.0
|
8.1 score on a scale
Standard Deviation 1.0
|
|
Consensus Rating (Rating Each Item for Importance)
Reduce healthcare service use
|
6.1 score on a scale
Standard Deviation 1.9
|
5.6 score on a scale
Standard Deviation 2.0
|
|
Consensus Rating (Rating Each Item for Importance)
Healthcare cost savings
|
6.0 score on a scale
Standard Deviation 1.8
|
6.0 score on a scale
Standard Deviation 1.7
|
|
Consensus Rating (Rating Each Item for Importance)
Optimal healthcare service management
|
7.4 score on a scale
Standard Deviation 1.5
|
7.4 score on a scale
Standard Deviation 1.6
|
|
Consensus Rating (Rating Each Item for Importance)
Increase patient satisfaction
|
7.5 score on a scale
Standard Deviation 1.4
|
7.7 score on a scale
Standard Deviation 1.1
|
|
Consensus Rating (Rating Each Item for Importance)
improve relationship, communication and partnership with the healthcare team
|
7.6 score on a scale
Standard Deviation 1.3
|
7.7 score on a scale
Standard Deviation 1.3
|
|
Consensus Rating (Rating Each Item for Importance)
improve depression
|
7.3 score on a scale
Standard Deviation 1.4
|
7.3 score on a scale
Standard Deviation 1.6
|
|
Consensus Rating (Rating Each Item for Importance)
Improve feelings of anxiety
|
7.4 score on a scale
Standard Deviation 1.4
|
7.5 score on a scale
Standard Deviation 1.5
|
|
Consensus Rating (Rating Each Item for Importance)
Improve emotional well-being
|
7.5 score on a scale
Standard Deviation 1.3
|
7.4 score on a scale
Standard Deviation 1.4
|
|
Consensus Rating (Rating Each Item for Importance)
Feeling able to cope better
|
7.5 score on a scale
Standard Deviation 1.3
|
7.4 score on a scale
Standard Deviation 1.3
|
|
Consensus Rating (Rating Each Item for Importance)
Improve family and friends understanding and support
|
6.9 score on a scale
Standard Deviation 1.5
|
6.9 score on a scale
Standard Deviation 1.6
|
|
Consensus Rating (Rating Each Item for Importance)
improve knowledge and understanding of kidney disease
|
7.5 score on a scale
Standard Deviation 1.4
|
7.7 score on a scale
Standard Deviation 1.4
|
|
Consensus Rating (Rating Each Item for Importance)
Feeling more in control of his own health and kidney disease
|
7.8 score on a scale
Standard Deviation 1.3
|
7.7 score on a scale
Standard Deviation 1.5
|
|
Consensus Rating (Rating Each Item for Importance)
Improve self-monitoring and health tracking
|
7.4 score on a scale
Standard Deviation 1.5
|
7.3 score on a scale
Standard Deviation 1.6
|
|
Consensus Rating (Rating Each Item for Importance)
Improving blood pressure
|
8 score on a scale
Standard Deviation 1.1
|
7.8 score on a scale
Standard Deviation 1.3
|
|
Consensus Rating (Rating Each Item for Importance)
Reduce risk of cardiovascular events and complications events and complications
|
8 score on a scale
Standard Deviation 1.2
|
7.8 score on a scale
Standard Deviation 1.7
|
|
Consensus Rating (Rating Each Item for Importance)
Prevent or slow the decline of kidney function
|
8.4 score on a scale
Standard Deviation 0.9
|
8.5 score on a scale
Standard Deviation 0.9
|
|
Consensus Rating (Rating Each Item for Importance)
Avoid the need for dialysis or kidney transplant
|
8.4 score on a scale
Standard Deviation 0.9
|
8.5 score on a scale
Standard Deviation 0.8
|
|
Consensus Rating (Rating Each Item for Importance)
Care & control of diabetes
|
7.5 score on a scale
Standard Deviation 1.5
|
6.8 score on a scale
Standard Deviation 3.1
|
|
Consensus Rating (Rating Each Item for Importance)
Improve life expectancy
|
7.7 score on a scale
Standard Deviation 1.7
|
7.8 score on a scale
Standard Deviation 1.9
|
|
Consensus Rating (Rating Each Item for Importance)
Reduce health problems and other complications associated with CKD
|
7.7 score on a scale
Standard Deviation 1.3
|
7.8 score on a scale
Standard Deviation 1.4
|
|
Consensus Rating (Rating Each Item for Importance)
Improve troublesome symptoms
|
7.8 score on a scale
Standard Deviation 1.2
|
7.8 score on a scale
Standard Deviation 1.3
|
|
Consensus Rating (Rating Each Item for Importance)
Increase physical activity
|
7.3 score on a scale
Standard Deviation 1.5
|
6.9 score on a scale
Standard Deviation 1.4
|
PRIMARY outcome
Timeframe: Between 3 to 6 monthPopulation: A ranked weighted score technique was calculated to identify the items that were ranked the most important. The items/outcomes ranked the highest overall were 'prevent or slow the decline of kidney function' and 'feeling more in control of own health and kidney disease'. The data below presents the top 3 ranked outcome overall
Round 3- Participants are asked to rank each item and themes in order from high to low importance to identify the most valued outcomes
Outcome measures
| Measure |
Cohort 1: Professional Expert
n=37 Participants
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: Survey: Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD
|
Cohort 2: Non-Professional Expert
n=25 Participants
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.
Other: Survey: Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD
|
|---|---|---|
|
Consensus Ranking (Ranking Items to Identify Top 3 Items)
Improve life expectancy
|
8 Participants
|
12 Participants
|
|
Consensus Ranking (Ranking Items to Identify Top 3 Items)
Prevent or slow the decline of kidney function
|
17 Participants
|
13 Participants
|
|
Consensus Ranking (Ranking Items to Identify Top 3 Items)
Feeling more in control of your own health and kidney disease
|
16 Participants
|
7 Participants
|
Adverse Events
Cohort 1: Professional Expert
Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths
Cohort 2: Non-Professional Expert
Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths
Serious adverse events
Adverse event data not reported
Other adverse events
Adverse event data not reported
Additional Information
Results disclosure agreements
- Principal investigator is a sponsor employee
- Publication restrictions are in place