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Gepubliceerd in: Quality of Life Research 6/2018

08-03-2018

Life for patients with myelofibrosis: the physical, emotional and financial impact, collected using narrative medicine—Results from the Italian ‘Back to Life’ project

Auteurs: Francesca Palandri, Giulia Benevolo, Alessandra Iurlo, Elisabetta Abruzzese, Angelo M. Carella, Chiara Paoli, Giuseppe A. Palumbo, Massimiliano Bonifacio, Daniela Cilloni, Alessandro Andriani, Attilio Guarini, Diamante Turri, Elena Maria Elli, Antonietta Falcone, Barbara Anaclerico, Pellegrino Musto, Nicola Di Renzo, Mario Tiribelli, Renato Zambello, Caterina Spinosa, Alessandra Ricco, Letizia Raucci, Bruno Martino, Mario Annunziata, Silvia Pascale, Anna Marina Liberati, Giorgio La Nasa, Margherita Maffioli, Massimo Breccia, Novella Pugliese, Silvia Betti, Gianfranco Giglio, Antonietta Cappuccio, Luigi Reale

Gepubliceerd in: Quality of Life Research | Uitgave 6/2018

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Abstract

Purpose

Myelofibrosis (MF) is a chronic myeloproliferative neoplasm characterised by an aggressive clinical course, with disabling symptoms and reduced survival. Patients experience a severely impaired quality of life and their families face the upheaval of daily routines and high disease-related financial costs. The aim of this study was to investigate the perceptions of Italian patients and their caregivers about living with MF and the burden of illness associated with MF.

Methods

A quali-quantitative questionnaire and a prompted written narrative survey were administered to patients affected by primary or post-essential thrombocythemia/post-polycythaemia vera MF and their primary caregiver in 35 Italian haematological centres.

Results

In total, 287 questionnaires were returned by patients and 98 by caregivers, with 215 and 62, respectively, including the narrative. At the time of diagnosis, the most commonly expressed emotional states of patients were fear, distress and anger, confirming the difficulty of this phase. A high level of emotional distress was also reported by caregivers. Along the pathway of care, the ability to cope with the disease differed according to the quality of care received. The mean cost to each patient attributable to MF was estimated as €12,466 per year, with an estimated average annual cost of loss of income of €7774 per patient and €4692 per caregiver.

Conclusions

Better understanding of the personal life of MF patients and their families could improve the relationships between health workers and patients, resulting in better focused healthcare pathways and more effective financial support to maintain patients in their social roles.

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Metagegevens
Titel
Life for patients with myelofibrosis: the physical, emotional and financial impact, collected using narrative medicine—Results from the Italian ‘Back to Life’ project
Auteurs
Francesca Palandri
Giulia Benevolo
Alessandra Iurlo
Elisabetta Abruzzese
Angelo M. Carella
Chiara Paoli
Giuseppe A. Palumbo
Massimiliano Bonifacio
Daniela Cilloni
Alessandro Andriani
Attilio Guarini
Diamante Turri
Elena Maria Elli
Antonietta Falcone
Barbara Anaclerico
Pellegrino Musto
Nicola Di Renzo
Mario Tiribelli
Renato Zambello
Caterina Spinosa
Alessandra Ricco
Letizia Raucci
Bruno Martino
Mario Annunziata
Silvia Pascale
Anna Marina Liberati
Giorgio La Nasa
Margherita Maffioli
Massimo Breccia
Novella Pugliese
Silvia Betti
Gianfranco Giglio
Antonietta Cappuccio
Luigi Reale
Publicatiedatum
08-03-2018
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 6/2018
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-018-1827-2