CML Advocates Network

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” 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

Abstract

Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries

Journal of Cancer Research and Clinical Oncology, 13 March 2017; DOI: 10.1007/s00432-017-2372-z

Mr. Jan Geissler, Mr. Giora Sharf , Mr. Felice Bombaci, Mrs. Mina Daban, Mr. Jan De Jong, Mr. Tony Gavin, Mrs. Jana Pelouchova, Mr. Euzebiusz Dziwinski, Mr. Joerg Hasford, Mrs. Verena Sophia Hoffmann

Optimal adherence to CML therapy is of key importance to maximize treatment effectiveness. Two clinical studies (ADAGIO and Hammersmith) have proven a clear correlation between adherence and achieving optimal treatment response and have revealed that non-adherence is common in CML patients (Marin et al. in J Clin Oncol 28(24):2381–2388, 2010, Noens et al. in Haematologica 99(33):437–447, 2014). The aim of this study is to assess the extent of suboptimal adherence and to investigate motivations and behavioural patterns of adherence in a worldwide patient sample. Questionnaires were provided by the CML Advocates Network and were filled in by patients online and offline. Patient characteristics, treatment and motivations were collected. Adherence was assessed by the 8-item Morisky Medication Adherence scale. Logistic regression models were fitted to investigate the influence of different factors on adherence. Overall, 2 546 questionnaires from 63 countries and 79 CML patient organisations were evaluable. 32.7% of participants were highly adherent, 46.5% were in the medium and 20.7% in the low adherence group. Factors increasing the probability of being in the high adherence group are older age, male sex, management of side effects, only one tablet per day and feeling well informed about CML by the doctor. More than 2 years since diagnosis were significantly lowering the chance as was the use of reminding tools. Living arrangements, multiple medication and personal payment obligations increased the probability to be at least in the medium adherent group. This is the most comprehensive study conducted to date to gain knowledge about factors causing non-adherence in CML. 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