Format

Send to

Choose Destination
Qual Life Res. 2018 Jun;27(6):1545-1554. doi: 10.1007/s11136-018-1827-2. Epub 2018 Mar 8.

Life for patients with myelofibrosis: the physical, emotional and financial impact, collected using narrative medicine-Results from the Italian 'Back to Life' project.

Author information

1
Seràgnoli Institute of Hematology and Medical Oncology, S. Orsola-Malpighi Hospital, Bologna, Italy.
2
Hematology, City of Health and Science Hospital and University, Torino, Italy.
3
Hematology Division IRCCS Ca' Granda-Maggiore Policlinico Hospital Foundation, Milan, Italy.
4
Hematology, S.Eugenio Hospital, Rome, Italy.
5
Centro Polispecialistico Pacini, Milan, Italy.
6
Clinica Villa Pia, Rome, Italy.
7
Department of Experimental and Clinical Medicine, CRIMM Centre for Research and Innovation on Myeloproliferative Diseases, Careggi Hospital, University of Firenze, Florence, Italy.
8
UO di Ematologia, AOU "Policlinico-V.Emanuele", Catania, Italy.
9
Department of Medicine, Section of Hematology, University of Verona, Verona, Italy.
10
Department of Clinical and Biological Sciences, University of Torino, Turin, Italy.
11
UOSD di Ematologia, ASL Roma1, Rome, Italy.
12
Haematology, IRCCS "Giovanni Paolo II" National Cancer Research Centre, Bari, Italy.
13
Ematologia 1 con TMO, A. O. R. Villa Sofia- Cervello, Palermo, Italy.
14
Hematology Division, San Gerardo Hospital ASST, Monza, Italy.
15
Unità Operativa di Ematologia San Giovanni Rotondo, IRCCS, Casa Sollievo della Sofferenza, Foggia, Italy.
16
Azienda Ospedaliera San Giovanni-Addolorata, Rome, Italy.
17
Scientific Direction, IRCCS-CROB, Referral Cancer Center of Basilicata, Rionero in Vulture, Potenza, Italy.
18
Hematology and Stam Cells Transplant Department, "Vito Fazzi" Hospital, Lecce, Italy.
19
Division of Hematology and BMT, Azienda Sanitaria Universitaria Integrata di Udine, Udine, Italy.
20
Hematology, University of Padova, Padua, Italy.
21
Ematologia con Trapianto, Ospedale San Giuseppe Moscati, Taranto, Italy.
22
Hematology and Transplant, Department of Emergency and Organ Transplant, Bari, Italy.
23
UO Ematologia AOR San Carlo, Potenza, Italy.
24
Hematology, Bianchi Melacrino Morelli Hospital, Reggio Calabria, Italy.
25
Hematology, Cardarelli Hospital, Napoli, Italy.
26
Hematology, Spirito Santo Hospital, Pescara, Italy.
27
Oncohematology, Santa Maria Hospital, Terni, Italy.
28
Hematology, Department of Medical Sciences, University of Cagliari, Cagliari, Italy.
29
Hematology, Circolo Hospital and Macchi Foundation, Varese, Italy.
30
Department of Cellular Biotechnology and Hematology, Sapienza University, Rome, Italy.
31
Hematology, Federico II University, Napoli, Italy.
32
Institute of Hematology, Catholic University, Rome, Italy.
33
Hematology, Cardarelli Hospital, Campobasso, Italy.
34
ISTUD Foundation, Milan, Italy.
35
ISTUD Foundation, Milan, Italy. lreale@istud.it.

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.

KEYWORDS:

Burden of illness; Indirect costs; Myelofibrosis; Narrative medicine; Quality of life

PMID:
29520559
DOI:
10.1007/s11136-018-1827-2
[Indexed for MEDLINE]
Free full text

Supplemental Content

Full text links

Icon for Springer Icon for University of Turin Instituional Repository AperTO
Loading ...
Support Center