Myeloproliferative disorders: Chronic Myeloid Leukemia from the patient s perspective
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1 Myeloproliferative disorders: Chronic Myeloid Leukemia from the patient s perspective Toni Montserrat. Pacientes LMC, Spain CML Advocates
2 DISCLOSURES There are no conflicts of interest and nothing to disclose Toni Montserrat CML PATIENT ADVOCATE Pacientes LMC (Spain) CML Advocates Network member
3 LEARNING OBJECTIVES Focus on chronic myeloid leukaemia as one of the myeloproliferative disorders. Better understand CML patient's issues and challenges in Have knowledge about the worldwide activities of the CML patient community and why patient advocacy groups are powerful partners.
4 CHRONIC MYELOID LEUKEMIA Overview CML is a type of cancer that begins in the cells in the bone marrow Causes of CML are unknown. It is not hereditary and not contagious The average age of diagnosis in western countries is 65 and in developing countries is 38
5 CHRONIC MYELOID LEUKEMIA The patient perspective Mental stress: I have cancer! Low-grade side effects, quality of life? Know laboratory results, feel in "safe haven", "PCR itis, fluctuations of the PCR after the comma Am I with the right doctor? Are there any studies for me? What's new in research? Chance of stopping treatment? Chance for cure? Family planning? Therapy adherence and the "long life with TKIs
6 Mental stress: I have cancer!
7 Low-grade side effects, quality of life? Patient- versus physician-reporting of symptoms and health status in chronic myeloid leukemia. Fabio Efficace Haematologica 2014; 99(4) doi: /haematol
8 BCR-ABL/ABL???? Know laboratory results, feel in "safe haven", "PCR itis", fluctuations of the PCR after the comma -1 LOG, -4 LOG???
9 Am I with the right doctor?
10 Are there any studies for me? What's new in research? Our registry:
11 Chance of stopping treatment? Chance for cure? CML DXè almost death sentence not long time ago TKI s Treatment and manage side effects Adherence very important (or almost death sentence) Stop taking the miracle pill TFR (Doc, are you crazy? I ll die)? Cure? No yet. Maybe soon, or never.
12 Family planning? Men / Women Young men / women Women in pregnacy Let s talk about the future
13 Therapy adherence: the "long life with TKIs Our adherence study: CML è TKI ènormal life expectancy Low adherence è Low chance of stable remission Still, 21% are poorly adherent! Low adherence 21% Medium adherence 47% High adherence 33% Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries. Geissler et al, Journal of Cancer Research and Clinical Oncology (2017), DOI: /s z
14 The CML Advocates Network cmladvocates.net
15 Survey patient-to-patient: side effects Pacientes LMC, Spain The CML Advocates Network (2017). Survey patient-to-patient re: side effects. file
16 Survey patient-to-patient: side effects Pacientes LMC, Spain The CML Advocates Network (2017). Survey patient-to-patient re: side effects. file
17 Factors Influencing Adherence in CML and Ways to Improvement: Results of a Patient-Driven Survey of 2546 Patients in 63 Countries 29% have missed a dose accidentally in last month 11% have missed a dose intentionally in last month 68 2 Yes 29 + Yes: Ser., USA, other Cen. & Lat. Am. No Don't Know 3 average doses missed in last month Yes: Ser., USA Yes No 8% missed both accidently and on purpose in the last month Factors infuencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries Geissler, J., Sharf, G., Bombaci, F. et al. J Cancer Res Clin Oncol (2017) 143: 1167.
18 Forgetting & routine interruption primary reasons for accidental, side effects for intentional non-adherence: Reason for missing accidentally % (n=1283) Reason for deciding to miss % (n=491) Forgot Interrupted Travelling Too ill Fell asleep Ran out of Medication not Reminder failed Couldn't swallow Dosing schedule Not feeling well Reduce side effects Attending special Wanted to socialise Interfered with travel Feeling down Dr said could miss CML under control Interfered with work Didn't want to be Feeling better To save money Friend/partner said Side effects aiming to reduce: Gastro (79%) Dermatologi cal (17%) Fatigue (21%) Whilst accidental missing is more linked to memory, purposeful missing of doses is more related to physical symptoms Factors infuencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries Geissler, J., Sharf, G., Bombaci, F. et al. J Cancer Res Clin Oncol (2017) 143: 1167.
19 CONCLUSIONS CML as a chronic disease and the CML patient challenges: Access to high quality therapies and diagnostics Treatment according to expert recommendations Adherence to therapy Effective side effect management Development of a cure CML patient advocacy is key to improve CML patients healthcare and quality of life.
20 Myeloproliferative disorders: Chronic Myeloid Leukemia from the patient s perspective Thank you! Toni Montserrat. Pacientes LMC, Spain CML Advocates
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