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

Study Overview
=================
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

Official Title
-----------------
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)

Conditions
-----------------
Chronic Kidney Diseases

Intervention / Treatment
-----------------
* Other: Other: Survey


Participation Criteria
=================
Eligibility Criteria
-----------------
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

Ages Eligible for Study
-----------------
Minimum Age: 18 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
Accepts Healthy Volunteers

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Cohort 1: Professional Expert<br>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<br>* Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD<br>|
| Cohort 2: Non-Professional Expert<br>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: Other: Survey<br>* Multiple survey rounds identifying most important outcomes for effective self-management for non-dialysis CKD<br>|

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Open ended free text question | 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 | Round 2- Participants are asked to rate each item on a 9 point Likert-type scale, the lowest scoring items are removed (consensus is predefined as ≥ 70% on each item scoring on the critical importance scale that is a score of 7-9). | Between 3 to 6 month | 
| Consensus Ranking | 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 | 

 Terms related to the study
=================
Keywords Provided by Centre Hospitalier Valida
-----------------
Survey, Chronic Kidney disease, Stakeholder