Massimo Breccia1, Guendalina Graffigna2, Sara Galimberti3, Alessandra Iurlo4, Ester Pungolino5, Michele Pizzuti6, Alessandro Maggi7, Franca Falzetti8, Silvana Franca Capalbo9, Tamara Intermesoli10, Margherita Maffioli11, Chiara Elena12, Alessandro Melosi13, Federico Simonetti14, Enrico Capochiani15, Roberta Della Seta16, Matteo Pacilli17, Mario Luppi18, Nicola Di Renzo19, Lucia Mastrullo20, Elena Trabacchi21, Daniele Vallisa21, Davide Rapezzi22, Ester Maria Orlandi12, Carlo Gambacorti-Passerini23, Fabio Efficace24, Giuliana Alimena25. 1. Department of Cellular Biotechnologies and Hematology, Sapienza University, Via Benevento 6, 00161, Rome, Italy. breccia@bce.uniroma1.it. 2. Department of Psychology, Università Cattolica del Sacro Cuore, Milan, Italy. 3. Hematology, Pisa, Italy. 4. Oncoematologia, Fondazione IRCCS Cà Granda, Ospedale Maggiore Policlinico, Milan, Italy. 5. Niguarda Ca' Grande Hospital, Milan, Italy. 6. Hematology, San Carlo Hospital, Potenza, Italy. 7. Hematology, Moscati Hospital, Taranto, Italy. 8. Hematology, Santa Maria della Misericordia Hospital, Perugia, Italy. 9. Hematology, A.O. Universitaria OO.RR., Foggia, Italy. 10. Ospedali Riuniti, Bergamo, Italy. 11. A.O.U. Ospedale di Circolo e Fondazione Macchi, Varese, Italy. 12. San Matteo Hospital, Pavia, Italy. 13. Hematology, Lucca, Italy. 14. Ospedale della Versilia, Camaiore, Italy. 15. Department Oncologico, Livorno, Italy. 16. Carrara Hospital, Carrara, Italy. 17. Santa Maria Goretti Hospital, Latina, Italy. 18. Hematology, University of Modena, Modena, Italy. 19. Hematology and Stem Cell Transplant, Fazzi Hospital, Lecce, Italy. 20. San Gennaro Hospital, Naples, Italy. 21. Hematology, Piacenza, Italy. 22. Hematology, A.S.O. S. Croce e Carle, Cuneo, Italy. 23. San Gerardo Hospital, Monza, Italy. 24. GIMEMA QoL data center, Rome, Italy. 25. Department of Cellular Biotechnologies and Hematology, Sapienza University, Via Benevento 6, 00161, Rome, Italy.
Abstract
BACKGROUND: Tyrosine kinase inhibitors (TKIs) drastically changed the outcome of patients diagnosed with chronic myeloid leukemia (CML). Several reports indicated the advantage of continue long-term adherence associated with positive outcome. Therefore, it is important to better understand from the patient's standpoint the experience of living with the disease and the related treatment. OBJECTIVES: In this study, quantitative analysis and narrative medicine were combined to get insights on this issue in a population of 257 patients with CML in chronic phase treated with TKIs (43 % men, with a median age of 58 years, 27 % aged 31-50 years), followed for a median time of 5 years. Sixty-one percent of patients enrolled were treated in first line, whereas 37 % were treated in second line. RESULTS: The results showed more positive perceptions and acceptance in males compared to females, without impact of disease on relationships. Level of positive acceptance was more evident in elderly compared to younger patients, with a close connection with median time from diagnosis. Overall, female patients reported negative perceptions and an impact of disease on family daily living. The majority of patients understood the importance of continue adherence to treatment, with 27 % resulting less adherent (60 % for forgetfulness), even if well informed and supported by his/her physician. DISCUSSION AND CONCLUSIONS: Narrative medicine, in association to quantitative analysis, can help physicians to understand needs of their patients in order to improve communication.
BACKGROUND: Tyrosine kinase inhibitors (TKIs) drastically changed the outcome of patients diagnosed with chronic myeloid leukemia (CML). Several reports indicated the advantage of continue long-term adherence associated with positive outcome. Therefore, it is important to better understand from the patient's standpoint the experience of living with the disease and the related treatment. OBJECTIVES: In this study, quantitative analysis and narrative medicine were combined to get insights on this issue in a population of 257 patients with CML in chronic phase treated with TKIs (43 % men, with a median age of 58 years, 27 % aged 31-50 years), followed for a median time of 5 years. Sixty-one percent of patients enrolled were treated in first line, whereas 37 % were treated in second line. RESULTS: The results showed more positive perceptions and acceptance in males compared to females, without impact of disease on relationships. Level of positive acceptance was more evident in elderly compared to younger patients, with a close connection with median time from diagnosis. Overall, female patients reported negative perceptions and an impact of disease on family daily living. The majority of patients understood the importance of continue adherence to treatment, with 27 % resulting less adherent (60 % for forgetfulness), even if well informed and supported by his/her physician. DISCUSSION AND CONCLUSIONS: Narrative medicine, in association to quantitative analysis, can help physicians to understand needs of their patients in order to improve communication.
Authors: Elias Jabbour; Hagop M Kantarjian; Giuseppe Saglio; Juan Luis Steegmann; Neil P Shah; Concepción Boqué; Charles Chuah; Carolina Pavlovsky; Jirí Mayer; Jorge Cortes; Michele Baccarani; Dong-Wook Kim; M Brigid Bradley-Garelik; Hesham Mohamed; Mark Wildgust; Andreas Hochhaus Journal: Blood Date: 2013-12-05 Impact factor: 22.113
Authors: Stacie B Dusetzina; Aaron N Winn; Gregory A Abel; Haiden A Huskamp; Nancy L Keating Journal: J Clin Oncol Date: 2013-12-23 Impact factor: 44.544
Authors: F Efficace; M Baccarani; G Rosti; F Cottone; F Castagnetti; M Breccia; G Alimena; A Iurlo; A R Rossi; S Pardini; F Gherlinzoni; M Salvucci; M Tiribelli; M Vignetti; F Mandelli Journal: Br J Cancer Date: 2012-08-07 Impact factor: 7.640
Authors: Melea A Ward; Gang Fang; Kristy L Richards; Christine M Walko; Stephanie R Earnshaw; Laura E Happe; Susan J Blalock Journal: Curr Med Res Opin Date: 2014-12-10 Impact factor: 2.580