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 SpinosaAlessandra 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

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)1545-1554
Number of pages10
JournalQuality of Life Research
Volume27
Issue number6
DOIs
Publication statusPublished - 2018

Keywords

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

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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    Palandri, F., Benevolo, G., Iurlo, A., Abruzzese, E., Carella, A. M., Paoli, C., Palumbo, G. A., Bonifacio, M., Cilloni, D., Andriani, A., Guarini, A., Turri, D., Elli, E. M., Falcone, A., Anaclerico, B., Musto, P., Di Renzo, N., Tiribelli, M., Zambello, R., ... Reale, L. (2018). Life for patients with myelofibrosis: the physical, emotional and financial impact, collected using narrative medicine—Results from the Italian ‘Back to Life’ project. Quality of Life Research, 27(6), 1545-1554. https://doi.org/10.1007/s11136-018-1827-2