outcomes that matter to patients: patient reported outcome measures (proms) for people with renal...
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Outcomes that matter to patients:Patient Reported Outcome Measures (PROMs) for people with renal replacement
UK Renal Registry2015 Annual Audit Meeting
Jo PartingtonPatient Reported Outcome MeasuresInsight Account Manager, NHS England
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Outcomes that Matter to Patients
Jo PartingtonMarch 2015
Patient Reported Outcome Measures (PROMs) for people with Renal Replacement
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Patient ReportedOutcomeMeasures
This slide pack will :• Provide an overview of
what PROMs are• Provide an over-view of the
renal replacement PROM project
• facilitate discussion on your thoughts about this, their content and how these could be used by you.
PROMs & Renal Replacement (RR) Slide Pack
Objectives Content
• Background: Whatare PROMs?
• Background – renal replacement PROMs project – aims and where are we now?
• Discussion
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Background information
Patient-reported outcome measures – what are they?
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Appleby and Devlin 2010
“The first health system internationally to measure what it produces in terms of health.”
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Background: what are PROMs?National data collections
Since 2009, all patients undergoing Hip Replacement, Knee Replacement, Varicose Vein and Groin Hernia surgery are asked to participate in PROMs
Objective
To measure and improve the quality of treatment and care patients receive.
Definition
Measures of the outcomes of treatment, which are based upon asking patients to report on their own health outcomes.
Scope
In 2012/13, 127,600 patients gave feedback on their health state before and after surgery.
241,000episodes
127,600 complete answers
Participation
• 3/4 patients fill out a PROMs questionnaire before surgery.
• Of these, 3/4 also respond to the post-operative questionnaire.
• Overall, more than 50% of patients give full feedback on their outcomes.
Non responders6
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Patients report their outcomes
• Patients assess their health based on five dimensions:
• Mobility; Self-care; Usual activities; Pain or discomfort; Anxiety or depression.
• Patients rate their health as: (1=no problems, 2=some problems, 3=severe)
• Patients rate their health on visual analogue scale from 0 to 100.
• Oxford Hip Score, Oxford Knee Score: 12 hip- or knee specific questions, each rated from 0 (=extreme problems) to 4 (= no problems)
• Aberdeen Varicose Vein Questionnaire, 13 questions covering Pain and skin irritation; Impact on regular activities; location of the VV; total score between 0 (=best) and 100 (=worst)
The questionnaires Timing
Finalised data is published approx. 18 months after surgery.
EQ-5D
Condition-specific questions
EQ-VAS
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Most patients report successful procedures
17 out of 20 patients say
their problems were much
better following hip
replacement
15 out of 20 patients say
their problems were much
better following knee
replacement
1 out of 35 patients say
their problems were worse following hip replacement
1 out of 16 patients say
their problems were worse
following knee replacement
17 out of 20 patients say
their problems were much
better following varicose vein
surgery
14 out of 20 patients say
their problems were much
better following groin hernia
repair
1 out of 40 patients say
their problems were worse
following varicose vein
surgery
1 out of 35 patients say
their problems were worse
following groin hernia
Hip KneeVaricose Vein
Groin hernia
My problems are much better after
surgery.
My problems are much better after
surgery.
My problems are a little better or
much the same.
My problems are a little better or
much the same.
My problems are worse than before.My problems are
worse than before.
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Aims of the collaboration between NHS England and the UK Renal Registry
Using PROMs with people requiringRenal Replacement
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Drivers for a project focussed on outcome
Measurement in RR
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Background to the RR PROM Project
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AIMs of the RR PROM Project
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What measurements matter to patients requiring RR?•EQ5D - Mobility; Self-care; Usual activities; Pain or discomfort; Anxiety or depression. Rated on a 5 point scale – no problems, some, moderate, severe problems and unable. For example:-
•Under each heading, please tick the ONE box that best describes your health TODAY
MOBILITY
I have no problems in walking about
I have slight problems in walking about
I have moderate problems in walking about
I have severe problems in walking about
I am unable to walk about
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Do these measurements matter to patients requiring RR?
•Palliative Outcome Scale POS-S Renal – an 18 item questionnaire, that concentrates mainly on symptoms, eg. nausea, poor appetite, difficulty sleeping and the degree to which the patient has been impacted by them, in the previous week - not at all, slightly, moderately, severely, overwhelmingly
•Kidney Disease Quality of Life (KDQoL) instrument has some core questions – SF-12 (similar to EQ-5D) alongside the burden , symptoms/problems , and the effects of kidney disease
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THANK YOU FOR LISTENING
• What do you think?
• Any further comments/questions?