Patient-based evidence from the patient perspective

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"Patient-based evidence from the patient perspective", presented on 27 June 2014 by Jan Geissler, CML Advocates Network, at Novartis Global Patient Forum, Basel

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Patient-based evidence from the patient perspective

  1. 1. Patient-based evidence from the patient perspective 27 June 2014 Novartis Global Patient Forum, Basel Jan Geissler, CML Advocates Network / EUPATI jan@cmladvocates.net / jan@patientsacademy.eu
  2. 2. It is not just about clinical efficacy Different patients want different things  Being part of decision-making? Master of your health vs “fix it for me”?  A quick fix vs. long durable remissions?  Maximum disease control?  Fewer side-effects / better QoL?  Oral outpatient treatment or hospital based care?  Ability to work? Have a social life?  Impact on family / family planning?  Financial impact (travel, patient/carer’s ability to work)
  3. 3. Perception of doctors, nurses, patients differs largely  Balance of risks vs. benefits  Balance of side-effects vs. treatment efficacy  Which treatment-related side-effects have the greatest impact on QoL Want some evidence? Here it is.
  4. 4. Doctor/patient perception on impact on QoL differs 4 The Myeloma Euronet Study Detecting Myeloma, ways to shortening an often painful and tedious patient odyssey: results from an international survey. Myeloma Euronet (2009). 314 physicians & nurses, 260 patients & carers, 43 countries
  5. 5. Doctor/patient perception on impact on QoL differs The CML Quality of Life Study Efficace F, Rosti G, Aaronson , et al, Haematologica, 2013 Nausea Headache Fatigue Diarrhea Muscle cramps Edema Skin problems Pain (Musculo-skeletal) Abdominal discomfort Health Status Patient graded higher Physician graded higher N=422
  6. 6. “This is cancer! - of course my patients are taking their drugs!”
  7. 7. Truly global patient-led research in 12 languages: 2546 CML patients from 79 countries participated Sample: Total of 2546 respondentsGlobal reach Methodology • Online - Recruited by patient associations online & via other methods • Paper & Pen (France, Germany, Italy) – Recruited by physicians at consultations • CML patients over 18 years old, currently taking oral medication for CML • Fieldwork – Started on CML World Day, 22/9 2012 – 30th January 2013 2151 395 Paper Online Countries with >30 respondents Countries with base <30 respondents Sharf et al., Haematol 2013; 98(s1), EHA-Abstract [1104]; Geissler et al., Blood 2013;112:4023. ASH-Abstract [4023]
  8. 8. Valid data? We also used the validated Morisky Adherence Scale to classify patients into adherence levels Questions: Forget medication Miss for other reason Stopped because felt worse Forget when travelling Take yesterday? Stop when under control Inconvenience How often difficulty remembering Low: 21 % Medium: 47 % High: 33 % Adherence score classifies patients into adherence groups: Sharf et al., Haematol 2013; 98(s1), EHA-Abstract [1104]; Geissler et al., Blood 2013;112:4023. ASH-Abstract [4023]
  9. 9. Patient Based Evidence from the Patient Organization Perspective Our expectations for future patient based evidence reporting is …  Who • Patients should be part of the research team, especially in terms of outcomes, side effects, QoL measurement  How and when • The patient is the only source of data for QoL, side effects, symptoms • Involve patients at the design stage of research, not when the protocol is already done.  Reliability / validation • Patient evidence can use validated tools, will increase confidence when decisions are made  Impact • Solid PRO data based on true patients needs might make or break trials, treatments, decisions • It will influence the way doctors and patients manage the disease
  10. 10. No research about us without us! Jan Geissler jan@cmladvocates.net jan@patientsacademy.eu Twitter @jangeissler

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