What are outcomes?
Outcomes are a result of a project. Many trials measure many outcomes. However, they do not always reflect what is important to a patient. They may be clinical outcomes, which are things like blood pressure, or they may be surrogate outcomes. It is also important to measure patient-reported outcomes (PROs). These are outcomes that reflect the perspective of patients for example how a patient feels and functions. Examples of patient-reported outcomes are fatigue, life participation and pain. The aim of patient-reported outcomes is to support decision-making and measure outcomes of importance to patients, caregivers and health professionals.
What are measures?
These outcomes are measure by patient-reported outcome measures (PROMs). PROMs aim to measure the PROs by a short questionnaire. For example, to determine how fatigued someone may be or how they can participate in life.
PROs and PROMs in kidney disease
In the kidney disease we do this through the Standardised Outcomes in Nephrology Initiative (SONG). SONG is a global project working to set up core outcomes for each area is kidney disease. Researchers report these outcomes and include these measures in trials across all stages of CKD. The steps to establish core outcomes include:
1. A systematic review of outcomes reported in trials. We look into all the outcomes reported.
2. Nominal group technique which involves patients and caregivers to identify and prioritise important outcomes.
3. An International Delphi survey to establish consensus among consumers and health professionals on outcomes. This means the group makes a decision.
4. The final step is to meet for a workshop to create the core outcome set.
SONG has involved more than 80 countries and more than 10 000 patients, caregivers and health professionals. Researchers have established core outcomes in all areas of kidney disease. This includes haemodialysis, peritoneal dialysis, kidney transplantation, children with CKD, polycystic kidney disease, glomerular disease and CKD not requiring kidney replacement therapy.