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Quality of Life Research

, Volume 27, Issue 6, pp 1545–1554 | Cite as

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

  • 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 RealeEmail author
Article

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

Quality of life Myelofibrosis Narrative medicine Burden of illness Indirect costs 

Notes

Acknowledgements

The authors acknowledge Nicola Vianelli—Hematologist at Seràgnoli Institute of Hematology and Medical Oncology, S.Orsola-Malpighi Hospital, Bologna—Maria Giulia Marini—director at ISTUD Foundation Health Care Area, Milan—for their scientific consultation, and Paola Chesi and Silvia Napolitano—researchers at ISTUD Foundation Milan—for the revision of the paper. Moreover, the authors acknowledge all the physicians who collaborated in the realisation of the project and disseminated the activities into their health care centres, and all the people who released the own testimony on the living with the disease.

Funding

This study was supported unconditionally by Novartis Oncology, Italy. The publication of study results was not contingent on the sponsor’s approval.

Compliance with ethical standards

Conflict of interest

A. Iurlo has acted a consultant for and received honoraria from Novartis; M. Pellegrino has received honoraria from Novartis, as producer of deferasirox and ruxolitinib that are agents used for the treatment of myelofibrosis; M.Breccia has received honoraria from Novartis, BMS, Pfizer and Incyte; M. Bonifacio has received research fundings from Novartis; all other authors declared no conflict of interests.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Supplementary material

11136_2018_1827_MOESM1_ESM.docx (18 kb)
Supplementary material 1 (DOCX 17 KB)

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Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Francesca Palandri
    • 1
  • Giulia Benevolo
    • 2
  • Alessandra Iurlo
    • 3
  • Elisabetta Abruzzese
    • 4
  • Angelo M. Carella
    • 5
    • 6
  • Chiara Paoli
    • 7
  • Giuseppe A. Palumbo
    • 8
  • Massimiliano Bonifacio
    • 9
  • Daniela Cilloni
    • 10
  • Alessandro Andriani
    • 11
  • Attilio Guarini
    • 12
  • Diamante Turri
    • 13
  • Elena Maria Elli
    • 14
  • Antonietta Falcone
    • 15
  • Barbara Anaclerico
    • 16
  • Pellegrino Musto
    • 17
  • Nicola Di Renzo
    • 18
  • Mario Tiribelli
    • 19
  • Renato Zambello
    • 20
  • Caterina Spinosa
    • 21
  • Alessandra Ricco
    • 22
  • Letizia Raucci
    • 23
  • Bruno Martino
    • 24
  • Mario Annunziata
    • 25
  • Silvia Pascale
    • 26
  • Anna Marina Liberati
    • 27
  • Giorgio La Nasa
    • 28
  • Margherita Maffioli
    • 29
  • Massimo Breccia
    • 30
  • Novella Pugliese
    • 31
  • Silvia Betti
    • 32
  • Gianfranco Giglio
    • 33
  • Antonietta Cappuccio
    • 34
  • Luigi Reale
    • 34
    Email author
  1. 1.Seràgnoli Institute of Hematology and Medical OncologyS. Orsola-Malpighi HospitalBolognaItaly
  2. 2.HematologyCity of Health and Science Hospital and UniversityTorinoItaly
  3. 3.Hematology Division IRCCS Ca’ Granda-Maggiore Policlinico Hospital FoundationMilanItaly
  4. 4.HematologyS.Eugenio HospitalRomeItaly
  5. 5.Centro Polispecialistico PaciniMilanItaly
  6. 6.Clinica Villa PiaRomeItaly
  7. 7.Department of Experimental and Clinical Medicine, CRIMM Centre for Research and Innovation on Myeloproliferative Diseases, Careggi HospitalUniversity of FirenzeFlorenceItaly
  8. 8.UO di Ematologia, AOU “Policlinico-V.Emanuele”CataniaItaly
  9. 9.Department of Medicine, Section of HematologyUniversity of VeronaVeronaItaly
  10. 10.Department of Clinical and Biological SciencesUniversity of TorinoTurinItaly
  11. 11.UOSD di Ematologia, ASL Roma1RomeItaly
  12. 12.HaematologyIRCCS “Giovanni Paolo II” National Cancer Research CentreBariItaly
  13. 13.Ematologia 1 con TMO, A. O. R. Villa Sofia- CervelloPalermoItaly
  14. 14.Hematology DivisionSan Gerardo Hospital ASSTMonzaItaly
  15. 15.Unità Operativa di Ematologia San Giovanni RotondoIRCCS, Casa Sollievo della SofferenzaFoggiaItaly
  16. 16.Azienda Ospedaliera San Giovanni-AddolorataRomeItaly
  17. 17.Scientific DirectionIRCCS-CROB, Referral Cancer Center of BasilicataRionero in VultureItaly
  18. 18.Hematology and Stam Cells Transplant Department“Vito Fazzi” HospitalLecceItaly
  19. 19.Division of Hematology and BMTAzienda Sanitaria Universitaria Integrata di UdineUdineItaly
  20. 20.HematologyUniversity of PadovaPaduaItaly
  21. 21.Ematologia con TrapiantoOspedale San Giuseppe MoscatiTarantoItaly
  22. 22.Hematology and TransplantDepartment of Emergency and Organ TransplantBariItaly
  23. 23.UO Ematologia AOR San CarloPotenzaItaly
  24. 24.HematologyBianchi Melacrino Morelli HospitalReggio CalabriaItaly
  25. 25.HematologyCardarelli HospitalNapoliItaly
  26. 26.HematologySpirito Santo HospitalPescaraItaly
  27. 27.OncohematologySanta Maria HospitalTerniItaly
  28. 28.Hematology, Department of Medical SciencesUniversity of CagliariCagliariItaly
  29. 29.HematologyCircolo Hospital and Macchi FoundationVareseItaly
  30. 30.Department of Cellular Biotechnology and HematologySapienza UniversityRomeItaly
  31. 31.HematologyFederico II UniversityNapoliItaly
  32. 32.Institute of HematologyCatholic UniversityRomeItaly
  33. 33.HematologyCardarelli HospitalCampobassoItaly
  34. 34.ISTUD FoundationMilanItaly

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