PAM is a specific measure of a patient's knowledge, skills and confidence in self-management, which is known as patient activation. It is calculated depending on the responses to 13 questions using an algorithm and the patient is then given an activation ‘level’ (1, 2, 3 or 4) that can be used to tailor information or care.
PROM is a term used for outcomes that are reported by the patients themselves,without a clinician or anyone else's interpretation. The UKRR collects PROMS about symptom burden (14 symptoms rated from not at all to overwhelming) and quality of life.
The UKRR uses the paper-based Your Health Survey to collect PROM and PAM data. Data collected include renal unit, treatment modality, sex, ethnicity, patient name/NHS number/postcode and date of birth, health literacy, EQ5D-5L (quality of life measure), POS-S Renal (symptom burden measure) and PAM (knowledge, skills and confidence in self-management).
Data are collected intermittently when required by a renal centre and are reported to patients via PatientView.
In 2016-2017, over 3,000 Your Health Surveys were collected by the UKRR as part of the quality improvement project 'Transforming Participation in Chronic Kidney Disease'.
