Personal history and quality of life in chronic myeloid leukemia patients: a cross-sectional study using narrative medicine and quantitative analysis.
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.



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.



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.



Narrative medicine, in association to quantitative analysis, can help physicians to understand needs of their patients in order to improve communication.
Department of Cellular Biotechnologies and Hematology, Sapienza University, Via Benevento 6, 00161, Rome, Italy. breccia@bce.uniroma1.it.
Massimo
M
Breccia
Department of Psychology, Università Cattolica del Sacro Cuore, Milan, Italy.
Guendalina
G
Graffigna
Hematology, Pisa, Italy.
Sara
S
Galimberti
Oncoematologia, Fondazione IRCCS Cà Granda, Ospedale Maggiore Policlinico, Milan, Italy.
Alessandra
A
Iurlo
Niguarda Ca' Grande Hospital, Milan, Italy.
Ester
E
Pungolino
Hematology, San Carlo Hospital, Potenza, Italy.
Michele
M
Pizzuti
Hematology, Moscati Hospital, Taranto, Italy.
Alessandro
A
Maggi
Hematology, Santa Maria della Misericordia Hospital, Perugia, Italy.
Franca
F
Falzetti
Hematology, A.O. Universitaria OO.RR., Foggia, Italy.
Silvana Franca
SF
Capalbo
Ospedali Riuniti, Bergamo, Italy.
Tamara
T
Intermesoli
A.O.U. Ospedale di Circolo e Fondazione Macchi, Varese, Italy.
Margherita
M
Maffioli
San Matteo Hospital, Pavia, Italy.
Chiara
C
Elena
Hematology, Lucca, Italy.
Alessandro
A
Melosi
Ospedale della Versilia, Camaiore, Italy.
Federico
F
Simonetti
Department Oncologico, Livorno, Italy.
Enrico
E
Capochiani
Carrara Hospital, Carrara, Italy.
Roberta Della
RD
Seta
Santa Maria Goretti Hospital, Latina, Italy.
Matteo
M
Pacilli
Hematology, University of Modena, Modena, Italy.
Mario
M
Luppi
Hematology and Stem Cell Transplant, Fazzi Hospital, Lecce, Italy.
Nicola
N
Di Renzo
San Gennaro Hospital, Naples, Italy.
Lucia
L
Mastrullo
Hematology, Piacenza, Italy.
Elena
E
Trabacchi
Hematology, Piacenza, Italy.
Daniele
D
Vallisa
Hematology, A.S.O. S. Croce e Carle, Cuneo, Italy.
Davide
D
Rapezzi
San Matteo Hospital, Pavia, Italy.
Ester Maria
EM
Orlandi
San Gerardo Hospital, Monza, Italy.
Carlo
C
Gambacorti-Passerini
GIMEMA QoL data center, Rome, Italy.
Fabio
F
Efficace
Department of Cellular Biotechnologies and Hematology, Sapienza University, Via Benevento 6, 00161, Rome, Italy.
Giuliana
G
Alimena
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003430:Cross-Sectional Studies; D005069:Evaluation Studies as Topic; D005260:Female; D006801:Humans; D015464:Leukemia, Myelogenous, Chronic, BCR-ABL Positive / Q000523:psychology* / Q000628:therapy; D008297:Male; D008875:Middle Aged; D033262:Narration; D047428:Protein Kinase Inhibitors / Q000627:therapeutic use*; D011788:Quality of Life / Q000523:psychology*
D047428:Protein Kinase Inhibitors
Chronic myeloid leukemia; Narrative medicine; Tyrosine kinase inhibitors