Breccia Massimo, Efficace Fabio, Sica Simona, Abruzzese Elisabetta, Cedrone Michele, Turri Diamante, Gobbi Marco, Carella Angelo Michele, Gozzini Antonella, Usala Emilio, Cavazzini Francesco, Danise Paolo, Tiribelli Mario, Binotto Gianni, Pregno Patrizia, Bocchia Monica, Gaidano Gianluca, Crugnola Monica, Bonifacio Massimiliano, Avanzini Paolo, Celesti Francesca, Guella Anna, Martino Bruno, Annunziata Mario, Luciano Luigiana, Stagno Fabio, Vallisa Daniele, Pungolino Esther, Iurlo Alessandra, Rambaldi Alessandro, Nardiello Ida, Orlandi Esther, Gambacorti-Passerini Carlo, Alimena Giuliana
Hematology, Department of Cellular Biotechnologies and Hematology, Sapienza University, Rome, Italy.
Italian Group for Adult Hematologic Diseases (GIMEMA), Data Center and Health Outcomes Research Unit, Rome, Italy.
Leuk Res. 2015 Oct;39(10):1055-9. doi: 10.1016/j.leukres.2015.07.004. Epub 2015 Jul 14.
Therapeutic approach for chronic myeloid leukemia (CML) patients has undergone a revolutionary change with the introduction of tyrosine kinase inhibitors, which improved overall survival and quality of life. Optimal therapy adherence has become of paramount importance to maximize the benefits in the long-term outcome. Several evidences have been reported that personal factors, such as social support, psychological and subjective perceptions about the drug used and the future, could influence adherence. We here report the results of a questionnaire specifically designed to evaluate factors influencing adherence and perceptions about the future, distributed to patients during regional Italian meetings. Overall, 1133 patients compiled the questionnaire: median age was 57 years. High rate of adherence was reported, but 42% of interviewed patients admitted that they had occasionally postponed a dose and 58% had discontinued therapy mainly for forgetfulness. The majority of patients discussed with personal physician about the importance of adherence and received sufficient information about illness and treatment, but would like to have discussed more about discomfort, anxiety and fear of the future. Summarizing personal drug compliance and estimating how many days a month, on average, the patients did not take the drug, the majority answered that it was less than 3 days (55%) and only a minority (4%) admitted that it was more than 7 days. Interviewed about discontinuation, 49% of patients answered that wouldn't interrupt because of fear of losing all the results achieved so far. This study suggests a higher level of satisfaction with more information received but the need of improving communication about possible future treatment free remission.
随着酪氨酸激酶抑制剂的引入，慢性髓性白血病（CML）患者的治疗方法发生了革命性变化，这提高了总体生存率和生活质量。最佳的治疗依从性对于最大化长期治疗效果至关重要。已有多项证据表明，个人因素，如社会支持、对所用药物及未来的心理和主观认知，可能会影响依从性。我们在此报告一份专门设计用于评估影响依从性的因素及对未来认知的调查问卷结果，该问卷在意大利地区会议期间分发给患者。总体而言，1133名患者填写了问卷：中位年龄为57岁。报告的依从率较高，但42%的受访患者承认他们偶尔会推迟服药，58%的患者主要因遗忘而中断治疗。大多数患者与私人医生讨论了依从性的重要性，并获得了有关疾病和治疗的充分信息，但希望能更多地讨论不适、焦虑和对未来的恐惧。总结个人药物依从性并估计患者平均每月有多少天未服药，大多数人回答少于3天（55%），只有少数人（4%）承认超过7天。在被问及中断治疗的原因时，49%的患者回答不会因为担心失去目前已取得的所有治疗效果而中断治疗。这项研究表明，患者对获得更多信息的满意度较高，但需要改善关于未来可能实现治疗后无疾病缓解的沟通。
