The EUTOS population-based registry: incidence and clinical characteristics of 2904 CML patients in 20 European Countries

Abstract

This population-based registry was designed to provide robust and updated information on the characteristics and the epidemiology of chronic myeloid leukemia (CML). All cases of newly diagnosed Philadelphia positive, BCR-ABL1+ CML that occurred in a sample of 92.5 million adults living in 20 European countries, were registered over a median period of 39 months. 94.3% of the 2904 CML patients were diagnosed in chronic phase (CP). Median age was 56 years. 55.5% of patients had comorbidities, mainly cardiovascular (41.9%). High-risk patients were 24.7% by Sokal, 10.8% by EURO, and 11.8% by EUTOS risk scores. The raw incidence increased with age from 0.39/100,000/year in people 20-29 years old to 1.52 in those >70 years old, and showed a maximum of 1.39 in Italy and a minimum of 0.69 in Poland (all countries together: 0.99). The proportion of Sokal and Euro score high-risk patients seen in many countries indicates that trial patients were not a positive selection. Thus from a clinical point of view the results of most trials can be generalized to most countries. The incidences observed among European countries did not differ substantially. The estimated number of new CML cases per year in Europe is about 6370.

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

“…The positive influence of higher age on adherence in our analysis seems surprising at first as the adherence of older patients is often assumed to be suboptimal although it is not very well described in the literature (Banning 2008;Gellad et al 2011;Balkrishnan 1998), but is likely resulting from data collection that was done mostly online resulting in a median age of 51 years (in comparison to an estimated median age in Europe of 56 years at diagnosis (Hoffmann et al 2015)) with only 25% of the patients being older than 61 years. Only 7% (n = 189) were older than 70 and only 38 patients were older than 80 years.…”

“…The 10-year survival probability increased from 20 to 53% with previous usually interferon alpha (IFN)-based standard therapy (Hehlmann et al 2003(Hehlmann et al , 2007 to about 90% in the imatinib era (Bjorkholm et al 2011;Hehlmann et al 2011). Given the treatment success and approximately 6000 newly diagnosed patients per year in Europe (Hoffmann et al 2015) and 6600 in the US (Howlader et al 2015) maximizing adherence to promote optimal outcomes is crucial.…”

The impact of comorbidity on health-related quality of life in elderly patients with chronic myeloid leukemia

“…A 5-year relative survival of elderly CML patients (≥65 years) was shown to be comparable to that of younger patients [2]. As recent data from large population-based registries report a median age at diagnosis of 56 years [3], it is reasonable to consider that many of the CML patients currently under treatment have even a greater median age. Nonetheless, elderly patients and those with comorbidity have not been adequately represented in several of the pivotal clinical efficacy trials conducted so far [4][5][6].…”

Digital PCR (Dpcr) a Step Forward to Detection and Quantification of Minimal Residual Disease (MRD) in Ph+/BCR-ABL1 Chronic Myeloid Leukemia (CML)

“…Indeed, more than 80% of CML patients have a life expectancy close to that of the general population [7][8][9][10][11]. Imatinib and more recently the 2nd generation TKIs, namely Nilotinib, Dasatinib and Bosutinib, administered daily at the respective standard doses, by a progressive reduction of the Ph+ leukemic clone, can induce complete cytogenetic responses (CCyR) in more than 80% to 90% of cases, but, moreover, a major molecular response (MMR or MR 3.0 =BCR-ABL1/ABL transcript level < 0.1% IS) and a deep molecular response (DMR) in 70% to 80% and 40% to 50% of patients, respectively [12].…”