Results of our pilot survey on adherence just published in "Journal of Patient Compliance" (Vol 2 Issue 4)
The "Journal of Patient Compliance" (Vol 2 Issue 4) has just published our scientific article on the patient-driven pilot survey on adherence in CML:
Optimal
adherence to oral cancer therapy is of key importance to maximise treatment effectiveness in patients. With the advance of molecular target therapies, cancer treatment in more and more indications is transforming from in-hospital care towards oral treatment in an outpatient setting. With cancer becoming a chronic disease, patients are often required to take the drug indefinitely on a daily basis. Ensuring an optimal adherence to treatment over the long-term period could be a challenge. As data on the driving factors of nonadherence in oncology is scarce, a pan-European workgroup of the CML Advocates Network has conducted a pilot study which has unveiled differences of non-adherence between countries, administration types and use of adherence tools in Chronic Myeloid Leukemia. This pilot study has provided the groundwork for a larger global adherence study that is currently ongoing in 12 languages.
Now 68 patient organisations from 55 countries are members of the CML Advocates Network
The "CML Advocates Network", an international platform for patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) now connects 68 organisations from 55 countries across all continents. This worldwide network offers support by sharing of best practice, information and advice for CML patient representatives. We are delighted to welcome our newest members "CML SA" (South Africa), ZAGRLJAJ (Bosnia and Herzegovina) and "The Association for Blood Cancer Patients Aid" (Poland). See the list of CML groups in the Network, and our worldwide map.
Leukemia Patient Advocates Foundation launches CML Adherence Study in 12 countries on 22/09/2012 – and needs your help!
The Leukemia Patient Advocates Foundation, the legal host of the CML Advocates Network, is proud to announce the launch of phase 2 of its International CML Adherence Survey. The survey will launch in 12 countries on International CML Awareness Day (22 Sept 2012). As it is organized by the non-profit patient community, this research work urgently needs your support now: If you are a CML patient treated with TKI, please participate. If you are a doctor treating CML patients: Please encourage your patients to participate!
Adherence: If you could see it through my eyes... (CancerWorld)
Oncologists have been shocked by the growing body of evidence showing that many cancer patients are failing to take their drugs as prescribed, even when there is strong evidence to show they will benefit, and the side-effects are not considered serious. In a recent article of the magazine "CancerWorld", Giora Sharf, Estelle Lecointe and Stella Kyriakides try to explain why this may be happening. They urge oncologists to be more aware of their patients’ doubts and concerns about their medication, and to help them feel more comfortable about discussing their problems with adherence. Read the full article here.
Now also in Italian: Video "What you need to know about adherence to therapy"
Taking medication exactly as prescribed is not always easy for many patients with chronic myeloid leukaemia, also known as CML. But, it's important. Adherence, or taking the medication as prescribed by the doctor, has a strong impact on the effectiveness of treatment. "Chronic Myeloid Leukemia: What you need to know about adherence to therapy" is a new video that educates patients with CML about the importance of adherence to treatment. Now also available in Italian language (and English)!
EHA Patient Advocacy Session: Quality of Life - do patients perceive it the same way as doctors do?
Patients, physicians and researchers all have a unique perspective on quality of life. However, does a patient perceive it the same way as their physician? With Quality of Life becoming more and more important when hematological diseases are turning into chronic diseases, this year’s “Patient Advocacy Session” at the European Hematology Association’s Annual Congress 2012 provided key insights into the patients and professionals’ perspectives on this important issue. The session, defined by the EHA Patient Working Group and chaired by Jan Geissler of the CML Advocates Network and Androulla Eleftheriou of the Thalassaemia International Federation, has become an integral part of EHA’s congress.
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