Kidney disease and treatments can affect patients in many different ways – some good some not so good. These effects are outcomes. Examples include life participation, pain, tiredness, itching, appetite.
Researchers look at treatments and measure these outcomes in their research project. For example in a clinical trial comparing treatments to see which is better.
Patient Centered Outcomes (PROs): PROs are outcomes are of value to patients. The SONG Initiative (Standarised Outcomes in Nephrology) has helped find and order outcomes by most importance. PROs allow researchers to report outcomes that are important to patient, caregivers and health professionals. This helps to support decision-making and improve care.
Patient Reported Outcome Measures (PROMs): PROMs are a short questionnaire that gathers how a patient feels and functions. Patients fill out the measure. If a someone fills out the measure for the patient it is a proxy measure. PROMs may collect information about a patient’s health and wellbeing, such as symptoms and self-reported quality of life. The SONG Initiative have developed PROMs for fatigue, pain and life participation.
Patient Reported Experience Measures (PREMs): PREMs are a short questionnaire that gather information from patients about their experience of a treatment or healthcare. PREMs may capture patients’ experience of or satisfaction with care.
We use PROMs and PREMs to:
- Inform patient care
- Promote patient involvement in their treatment
- Standards and quality assurance across the health system
- Track changes over time
- Address areas that are important to patients in clinical treatments and clinical practice
- Explore new research areas or interventions
- Aid decision making