Patient related outcome measures are measures of a patient’s health status or health related quality of life. They are typically short, self completed questionnaires, which measure the patient’s health status or health related quality of life at a single point in time. PROMS are now part of the NHS landscape.
“Effectiveness of care. This means understanding success rates from different treatments for different conditions. Assessing this will include clinical measures such as mortality or survival rates and measures of clinical improvement. Just as important is the effectiveness of care from the patient’s own perspective which will be measured through patient reported outcome measures (PROMs) …”. Lord Darzi, High Quality Care for All, June 2008
PROMs are a means of collecting information on the clinical quality of care delivered to NHS patients as perceived by the patients themselves. From 1 April 2009 routine collection of PROMs for hip replacement, knee replacement, hernia and varicose vein surgery will be required as part of the standard NHS contract for acute services. Detailed guidance on the PROMs data collection model, monitoring and managing performance have recently been published.
PROMS, or quality of life measures have been used in kidney disease in research but as far as I am aware, not as part of the service specification. Research in this area is important to tell us which generic quality of life instruments will allow comparisons across medical conditions but we are also likely to need disease specific instruments or instruments designed to capture symptom burden during different modalities of replacement therapy.
For kidney disease and other long term conditions the PROMS ideally should provide comprehensive measures across the whole pathway from the period of choice before replacement therapy through to transplantation, dialysis and/or conservative care.
Well conducted research studies can help identify components of care or patterns of practice associated with better patient reported outcomes. It can also measure the effect of interventions – such as establishing a peer support programme. By putting PROMS in the service specification and commissioning contracts the whole process of engaging the service with the views and experience of the users, people with kidney disease, can be systematised.
For kidney disease the first stage is to identify what has already been done. Fergus Caskey (Consultant Renal Physician, Bristol) has been advising on what such a literature review should include and what methods should be used. Fergus has had training in development use of quality of life measures, initially as a Research Fellow in Aberdeen but subsequently both in Germany and at the UK Renal Registry in Bristol. It is important that we get information concerning what is already known and what has already been done that covers all stages of CKD and AKI in both adults and children. In time this may link to the best practice tariff for dialysis and other initiatives aimed at promoting quality of kidney care as the organising principle for our services. More about that later.