Patient Reported Outcome Measures provide an insight from the patient's perspective of the impact of diasease and treatment on their health and quality of life.

1. Patient Reported Outcomes – What are they & why are they important? Dr Keith Meadows DHP Research & Consultancy Ltd

3. The New Policy Context

4. “ Despite a century of developments in medical technology, and vast improvements in the ability of medical science to prevent, diagnose and treat disease and ill health, attempts to measure the outputs of health care in terms of their impact on patients’ health have not progressed beyond Florence Nightingale’s time.” Getting the most out of PROMs Kings Fund 2010

6. … the NHS will be the first health care system in the world to measure what it produces in terms of health , rather than in terms of the production of health care. Getting the most out of PROMs Kings Fund

7. What are Outcomes?

8. Health Outcomes – A definition “ Outcomes, by and large, remain the ultimate validation of the effectiveness and quality of medical care." Avedis Donabedian 1966

9. The ultimate measure by which to judge the quality of medical effort is whether it helps patients (and their families), as they see it. Berwick 1997

10. But!! “ Different perspectives on outcomes need to be acknowledged. For instance, patients, carers and clinical staff may have different views of what outcomes are important, how you would measure them, and even which were desirable” Long A, Jefferson J 1999

12. Sources of outcome Patient Outcome Assessment Clinician reported Caregiver Physiological Patient reported

13. What are PROMs?

18. How can Outcomes be Measured?

21. What are the opportunities that PROM data presents?

22. PROM Stakeholders Government Charities Professional bodies Providers Patients Commisioners Health care professionals Pharma PROMs

26. Hypothetical example of benefits of treatment 25 30 45 50 55 60 65 70 75 Anxiety summary score (higher scores better health) Pre-treatment 3 months later People of similar age & treatment UK sample

27. Linking PROM Research, guidelines & Routine practice Guidelines based on research outcomes Routine practice Research using PROMs

28. Some Caveats

31. What More Needs to be done to Improve Outcome Assessment & Feedback?

36. Addendum An Example from Diabetes

39. Diabetes Health Profile Conceptual Model © DHP Research & Consultancy Limited 2010 Impact Management Treatment Symptoms Diet Complications Diabetes Emotional Behavioural Anxiety Mood Limitations in Social/work functioning Eating behaviour DHP

40. What does the DHP Measure? Psychological distress Barriers to activity Disinhibited eating dysphoric mood, irritability, feelings of hopelessness anxiety, perceived impairment, restrictions in activity Lack of eating restraint, eating in response to emotional arousal and external food cues

41. Two versions of the DHP DHP-18 18-items DHP-1 32-items Type1 and insulin requiring Type 1 & Type 2 including tablet, diet

42. DHP-18 Conceptual Framework Psychological distress Lose temper/shout Moody due to diabetes Lose temper over testing Lose temper over small things More arguments at home Days tied to meal times Food controls life Difficult staying out late Worry about colds and flu Get edgy when nowhere to eat Don’t go out when sugars are low Depressed due to diabetes Worry going into busy shops Eat to cheer self up Hard saying no to food Eat extra when bored/fed up Not so many nice things to eat Easy to stop eating Barriers to activity Disinhibited eating

43. How is the DHP scored? Items scored using 4-point Likert type scale (range 0-3) Standardised subscale scores 0 (no dysfunction) thru 100 (max dysfunction) Standardised populations means

44. DHP-18 - Description of very high and very low BA, PD and DE scale scores Absence of eating in response to food cues and or emotional arousal. No excessive eating. Substantial and or frequent levels of eating in response to food cues and emotional arousal. Excessive eating. DE Little or absence of restricting anxiety or perceived limitations in social/roles Very significant levels of anxiety restricting behaviour and perceived limitations in social/role activities BA None or little experienced lowered mood or feelings of expressed hostility Frequent and or substantial emotional distress including dysphoric mood, irritability and externally directed hostility PD Very low Very high Scale

45. If you would like to discuss how DHP Research can help you to use and analyse Patient Reported Outcomes for healthcare, pharmaceutical or biotech, or would like more information on the DHP, please get in touch. Email: [email_address] Mobile: +44 (0) 796 022 8124 Tel: +44 (0) 208 467 3739 Website: www.dhpresearch.com Linkedin: http://url.ie/92wf