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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)

Status
Completed
Phases
Unknown
Study type
Observational
Source
ClinicalTrials.gov
Registry ID
NCT05991726
Enrollment
140
Registered
2023-08-15
Start date
2022-05-05
Completion date
2023-04-03
Last updated
2026-04-30

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Chronic Kidney Diseases

Keywords

Survey, Chronic Kidney disease, Stakeholder

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

Interventions

OTHEROther: Survey

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

Sponsors

University of Leicester
Lead SponsorOTHER

Study design

Observational model
OTHER
Time perspective
PROSPECTIVE

Eligibility

Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes

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

Design outcomes

Primary

MeasureTime frameDescription
Open Ended Free Text Question (Identifying Stakeholder Views on the 3 Most Important Outcomes for Self-management)Between 3 to 6 monthRound 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
Consensus Rating (Rating Each Item for Importance)Between 3 to 6 monthRound 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.
Consensus Ranking (Ranking Items to Identify Top 3 Items)Between 3 to 6 monthRound 3- Participants are asked to rank each item and themes in order from high to low importance to identify the most valued outcomes

Countries

United Kingdom

Baseline characteristics

Characteristic
Age, Categorical
<=18 years
0 Participants
Age, Categorical
>=65 years
8 Participants
Age, Categorical
Between 18 and 65 years
70 Participants
Ethnicity (NIH/OMB)
Hispanic or Latino
0 Participants
Ethnicity (NIH/OMB)
Not Hispanic or Latino
64 Participants
Ethnicity (NIH/OMB)
Unknown or Not Reported
0 Participants
Sex: Female, Male
Female
27 Participants
Sex: Female, Male
Male
44 Participants

Adverse events

Event typeEG000
affected / at risk
EG001
affected / at risk
deaths
Total, all-cause mortality
0 / 00 / 0
other
Total, other adverse events
0 / 00 / 0
serious
Total, serious adverse events
0 / 00 / 0

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: May 1, 2026