Adherence in CML: Research by the CML Advocates Network

Our publication in Journal of Cancer Research and Clinical Oncology: "Factors influencing adherence in CML and ways to improvement"

JOCR

Non-Adherence to treatment in chronic diseases is  a  well-known problem. The dramatic evolution in CML  treatment  in  the  last  decade, resulting  from  the  introduction of Imatinib  and  followed  by  second  generation TKIs,  has  turned  CML  into  a  kind  of  chronic  disease where patients need to take their medication on daily basis.

In  2012, the  CML  Advocates  Network decided   to   conduct   a   large, scientifically sound international study on adherence. It enrolled patients from 9/2012 to 1/2013 based on  a  comprehensive  questionnaire  in  12  languages.  The  aim  of  this  study  was  to  investigate motivations  and  behavioral  patterns  of  adherence  in  CML and  subsequently  support  hematologists and   patients   to   improve   adherence   and   develop   suitable   adherence   tools.   Overall   2.546 questionnaires filled in by CML patients from 63 countries and 79 CML patient organisations were returned.

Our publication “Factors influencing 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). doi:10.1007/s00432-017-2372-z” has been a tough ride for us non-scientists over the past three years, given we needed support to do the data analysis and write a scientific paper.

Our paper has now been published in the Journal of Cancer Research and Clinical Oncology. Thank you to all who has collaborated in this study: Better information on the disease, medication and management of side effects, supported by haematologists, is key to improve adherence.

Full text (HTML): http://link.springer.com/article/10.1007/s00432-017-2372-z
Full text for download (PDF): http://link.springer.com/content/pdf/10.1007%2Fs00432-017-2372-z.pdf

 

 


 

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.

The CML Advocates Network has conducted a large international study with 2546 patients from 63 countries and 79 CML patient organisations in 12 languages. It aimed to investigate motivations and behavioural patterns of adherence in CML, and subsequently support hematologists and patients to improve adherence and develop adherence tools.

EHA2013-Adherence-Giora800Non-adherence In Chronic Myeloid Leukemia: Results of a Global Survey of 2546 CML Patients in 79 Countries: Presentation of results at EHA 2013

The global CML Advocates Network Adherence Survey was presented at the European Hematology Association (EHA) Congress 18 in Stockholm on 16/6/2013 in the oral session "08. CML - Clinical" (EHA Abstract S1104). Authors were Giora Sharf, Verena Hoffmann, Felice Bombaci, Mina Daban, Fabio Efficace, Joëlle Guilhot, Jana Pelouchová, Euzebiusz J. Dziwinski, Jan de Jong, Anthony Gavin, Jan Geissler.

The presentation is available on as a webstream and as a PowerPoint file here

Questionnaire used in our international CML Adherence Survey. Please note that the Moriskey Scale has been used, which requires a license from Prof. Moriskey. The questionnaire was translated into 12 languages, this is the English version.

 

 

ashposterFactors Predicting Intentional Non-Adherence In Chronic Myeloid Leukemia: A Multivariate Analysis On 2546 Patients By The CML Advocates Network: Presentation of results at ASH 2013

At the Annual Congress of the American Society of Hematology (ASH) in December 2013, the CML Advocates Network was presenting new results of a multivariate analysis on factors predicting intentional non-adherence in New Orleans 2013.

Click here to read the ASH abstract #4023

Click here to download the poster.

jpccover

Pilot study on Adherence in CML:
Published 2012

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. The pilot study has provided the groundwork for a larger global adherence study that is currently ongoing in 12 languages.

The results of the pilot study were published in the Journal For Patient Compliance, Vol 2 Issue 4 (published online on 12 Dec 2012): "Adherence in Chronic Myeloid Leukemia: Results of a Patient-driven Pilot Survey, Jan Geissler, Giora Sharf".

More details here

Video on Adherence in CML:
Available in English and Italian, plus versions with subtitles in German, Spanish, Hebrew, Dutch and Chinese

Taking medication exactly as prescribed is not always easy for many patients with chronic myeloid leukaemia. However, adherence, or taking the medication as prescribed by the doctor, is important, as it has a strong impact on the effectiveness of treatment.  "Chronic Myeloid Leukemia: What you need to know about adherence to therapy" is a video that educates patients with CML about the importance of adherence to treatment. The video was developed by a European workgroup of 8 patient advocacy groups and CML experts, supported with in-kind resources from Bristol-Myers Squibb.

See the video and more details here