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

Health & Medicine

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

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)

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.

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

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

“This is cancer!
- of course my patients are taking their drugs!”

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]

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]

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

No research
about us
without us!
Jan Geissler
jan@cmladvocates.net
jan@patientsacademy.eu
Twitter @jangeissler

This research plan aims to study the relationship between systemic conditions like osteoporosis, cardiovascular disease, and diabetes, and periodontal disease. The researcher will conduct a study of 40 patients, with 20 healthy patients as a control group and 20 patients with systemic conditions. All patients will undergo routine dental examinations and the results will be analyzed to see if the examination findings are more exaggerated for those with systemic conditions, which could indicate a link between the conditions and periodontal disease. Understanding this relationship could impact dental practice by allowing practitioners to better treat patients with periodontal disease who also have systemic conditions.

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