title: Health-related quality of life and burden of fatigue in patients with primary immune thrombocytopenia by phase of disease.
abstract: The main objective of this study was to compare health-related quality of life (HRQOL) of primary immune thrombocytopenia (pITP) patients with that of general population, overall, and by patient group (i.e., newly diagnosed, persistent, and chronic patients). Fatigue was also investigated as a secondary objective. Overall, 424 adult patients were enrolled in a multicenter observational study and the control group consisted of a representative sample from the general population. Propensity score matching plus further multivariate linear regression adjustment was used to compare HRQOL outcomes between pITP patients and general population. Mean age of patients was 54 years. Of those with HRQOL assessment, 99 patients (23.6%) were newly diagnosed, 53 (12.6%) were persistent, and 268 (63.8%) were chronic pITP patients. Comparison by patient group versus their respective peers in the general population revealed greater impairments in persistent pITP patients. Persistent pITP patients reported clinically meaningful impairments in physical functioning (-15; 95% CI -24.1 to -5.8; P = 0.002), social functioning (-15.3; 95% CI -25.5 to -5.1; P = 0.004), role physical (-28.4; 95% CI -43.1 to -13.7; P < 0.001), role emotional (-23.9; 95% CI -40.1 to -7.7; P = 0.004), and mental health scales (-11.3; 95% CI -21.2 to -1.4; P = 0.026) of the SF-36 questionnaire. Higher fatigue severity was associated with lower physical and mental HRQOL outcomes. Our findings suggest that the burden of the disease and treatment might depend on the disease phase and that persistent pITP patients are the most vulnerable subgroup. Am. J. Hematol. 91:995-1001, 2016. © 2016 Wiley Periodicals, Inc.
authors.affiliation: Italian Group for Adult Hematologic Diseases (GIMEMA), Data Center and Health Outcomes Research Unit, Rome, Italy. f.efficace@gimema.it.
authors.forename: Fabio
authors.initials: F
authors.lastname: Efficace
authors.affiliation: Italian Group for Adult Hematologic Diseases (GIMEMA), Data Center and Health Outcomes Research Unit, Rome, Italy.
authors.forename: Franco
authors.initials: F
authors.lastname: Mandelli
authors.affiliation: Italian Group for Adult Hematologic Diseases (GIMEMA), Data Center and Health Outcomes Research Unit, Rome, Italy.
authors.forename: Paola
authors.initials: P
authors.lastname: Fazi
authors.affiliation: Department of Cellular Biotechnologies and Hematology, University of Rome "Sapienza", Rome, Italy.
authors.forename: Cristina
authors.initials: C
authors.lastname: Santoro
authors.affiliation: Division of Hematology, Department of Translational Medicine, University of Eastern Piedmont, Novara, Italy.
authors.forename: Gianluca
authors.initials: G
authors.lastname: Gaidano
authors.affiliation: Italian Group for Adult Hematologic Diseases (GIMEMA), Data Center and Health Outcomes Research Unit, Rome, Italy.
authors.forename: Francesco
authors.initials: F
authors.lastname: Cottone
authors.affiliation: Hemostasis/Thrombosis Unit and Hemophilia Centre, Città Della Salute E Della Scienza, Molinette, Turin, Italy.
authors.forename: Alessandra
authors.initials: A
authors.lastname: Borchiellini
authors.affiliation: Hematology and Bone Marrow Transplantation, University of Milano-Bicocca, San Gerardo Hospital, Monza, Italy.
authors.forename: Monica
authors.initials: M
authors.lastname: Carpenedo
authors.affiliation: Hematology and Bone Marrow Transplantation Unit, Ospedale Oncologico di Riferimento Regionale Armando Businco, Cagliari, Italy.
authors.forename: Maria Pina
authors.initials: MP
authors.lastname: Simula
authors.affiliation: Divisionof Hematology, Azienda Ospedaliera Papardo, Messina, Italy.
authors.forename: Valeria
authors.initials: V
authors.lastname: Di Giacomo
authors.affiliation: Clinica Ematologica IRCCS AOU San Martino IST, Genova, Italy.
authors.forename: Micaela
authors.initials: M
authors.lastname: Bergamaschi
authors.affiliation: Hematology, Azienda Ospedaliera Bianchi-Melacrino-Morelli, Reggio Calabria, Italy.
authors.forename: Iolanda Donatella
authors.initials: ID
authors.lastname: Vincelli
authors.affiliation: Scientific Director, Hematology Project Foundation, Vicenza, Italy.
authors.forename: Francesco
authors.initials: F
authors.lastname: Rodeghiero
authors.affiliation: Department of Cell Therapy and Hematology, San Bortolo Hospital, Vicenza, Italy.
authors.forename: Marco
authors.initials: M
authors.lastname: Ruggeri
authors.affiliation: Department of Haematology, S. Eugenio Hospital, Rome, Italy.
authors.forename: Laura
authors.initials: L
authors.lastname: Scaramucci
authors.affiliation: Department of Scienze Cliniche E Di Comunità, University of Milan, Hematology and Bone Marrow Transplant Unit, ASST-Ospedale Papa Giovanni XXIII, Bergamo, Italy.
authors.forename: Alessandro
authors.initials: A
authors.lastname: Rambaldi
authors.affiliation: Department of Haematology and Stem Cell Transplantation Unit, IRCCS 'Casa Sollievo Della Sofferenza' Hospital, San Giovanni Rotondo, Italy.
authors.forename: Nicola
authors.initials: N
authors.lastname: Cascavilla
authors.affiliation: Department of Oncology, Hematology and Respiratory Diseases, Section of Hematology, University of Modena and Reggio Emilia, Azienda Ospedaliero-Universitaria Policlinico, Modena, Italy.
authors.forename: Fabio
authors.initials: F
authors.lastname: Forghieri
authors.affiliation: Division of Hematology, University of Messina, Messina, Italy.
authors.forename: Annamaria
authors.initials: A
authors.lastname: Petrungaro
authors.affiliation: Hematology Unit, "Di Venere" Hospital, Bari, Italy.
authors.forename: Paolo
authors.initials: P
authors.lastname: Ditonno
authors.affiliation: Department of Medical Sciences, University of Cagliari, Cagliari, Italy.
authors.forename: Giovanni
authors.initials: G
authors.lastname: Caocci
authors.affiliation: Unit of Transfusion and Hematology, Treviglio Hospital, Treviglio, Italy.
authors.forename: Sonia
authors.initials: S
authors.lastname: Cirrincione
authors.affiliation: Department of Cellular Biotechnologies and Hematology, University of Rome "Sapienza", Rome, Italy.
authors.forename: Maria Gabriella
authors.initials: MG
authors.lastname: Mazzucconi
mesh_terms: D000328:Adult; D000368:Aged; D005221:Fatigue / Q000209:etiology*; D005260:Female; D006801:Humans; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D010809:Physical Fitness; D016553:Purpura, Thrombocytopenic, Idiopathic / Q000150:complications / Q000523:psychology*; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires