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

2 Citations (Scopus)

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

Fingerprint

Primary Myelofibrosis
Caregivers
Costs and Cost Analysis
Essential Thrombocythemia
Financial Support
Polycythemia Vera
Cost of Illness
Aptitude
Quality of Health Care
Anger
Fear
Quality of Life
Delivery of Health Care

Keywords

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

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Life for patients with myelofibrosis : the physical, emotional and financial impact, collected using narrative medicine—Results from the Italian ‘Back to Life’ project. / Palandri, Francesca; Benevolo, Giulia; Iurlo, Alessandra; Abruzzese, Elisabetta; Carella, Angelo M.; Paoli, Chiara; Palumbo, Giuseppe A.; Bonifacio, Massimiliano; Cilloni, Daniela; Andriani, Alessandro; Guarini, Attilio; Turri, Diamante; Elli, Elena Maria; Falcone, Antonietta; Anaclerico, Barbara; Musto, Pellegrino; Di Renzo, Nicola; Tiribelli, Mario; Zambello, Renato; Spinosa, Caterina; Ricco, Alessandra; Raucci, Letizia; Martino, Bruno; Annunziata, Mario; Pascale, Silvia; Liberati, Anna Marina; la Nasa, Giorgio; Maffioli, Margherita; Breccia, Massimo; Pugliese, Novella; Betti, Silvia; Giglio, Gianfranco; Cappuccio, Antonietta; Reale, Luigi.

In: Quality of Life Research, Vol. 27, No. 6, 2018, p. 1545-1554.

Research output: Contribution to journalArticle

Palandri, F, Benevolo, G, Iurlo, A, Abruzzese, E, Carella, AM, Paoli, C, Palumbo, GA, Bonifacio, M, Cilloni, D, Andriani, A, Guarini, A, Turri, D, Elli, EM, Falcone, A, Anaclerico, B, Musto, P, Di Renzo, N, Tiribelli, M, Zambello, R, Spinosa, C, Ricco, A, Raucci, L, Martino, B, Annunziata, M, Pascale, S, Liberati, AM, la Nasa, G, Maffioli, M, Breccia, M, Pugliese, N, Betti, S, Giglio, G, Cappuccio, A & 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, vol. 27, no. 6, pp. 1545-1554. https://doi.org/10.1007/s11136-018-1827-2
Palandri, Francesca ; Benevolo, Giulia ; Iurlo, Alessandra ; Abruzzese, Elisabetta ; Carella, Angelo M. ; Paoli, Chiara ; Palumbo, Giuseppe A. ; Bonifacio, Massimiliano ; Cilloni, Daniela ; Andriani, Alessandro ; Guarini, Attilio ; Turri, Diamante ; Elli, Elena Maria ; Falcone, Antonietta ; Anaclerico, Barbara ; Musto, Pellegrino ; Di Renzo, Nicola ; Tiribelli, Mario ; Zambello, Renato ; Spinosa, Caterina ; Ricco, Alessandra ; Raucci, Letizia ; Martino, Bruno ; Annunziata, Mario ; Pascale, Silvia ; Liberati, Anna Marina ; la Nasa, Giorgio ; Maffioli, Margherita ; Breccia, Massimo ; Pugliese, Novella ; Betti, Silvia ; Giglio, Gianfranco ; Cappuccio, Antonietta ; Reale, Luigi. / Life for patients with myelofibrosis : the physical, emotional and financial impact, collected using narrative medicine—Results from the Italian ‘Back to Life’ project. In: Quality of Life Research. 2018 ; Vol. 27, No. 6. pp. 1545-1554.
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title = "Life for patients with myelofibrosis: the physical, emotional and financial impact, collected using narrative medicine—Results from the Italian ‘Back to Life’ project",
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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T1 - Life for patients with myelofibrosis

T2 - the physical, emotional and financial impact, collected using narrative medicine—Results from the Italian ‘Back to Life’ project

AU - Palandri, Francesca

AU - Benevolo, Giulia

AU - Iurlo, Alessandra

AU - Abruzzese, Elisabetta

AU - Carella, Angelo M.

AU - Paoli, Chiara

AU - Palumbo, Giuseppe A.

AU - Bonifacio, Massimiliano

AU - Cilloni, Daniela

AU - Andriani, Alessandro

AU - Guarini, Attilio

AU - Turri, Diamante

AU - Elli, Elena Maria

AU - Falcone, Antonietta

AU - Anaclerico, Barbara

AU - Musto, Pellegrino

AU - Di Renzo, Nicola

AU - Tiribelli, Mario

AU - Zambello, Renato

AU - Spinosa, Caterina

AU - Ricco, Alessandra

AU - Raucci, Letizia

AU - Martino, Bruno

AU - Annunziata, Mario

AU - Pascale, Silvia

AU - Liberati, Anna Marina

AU - la Nasa, Giorgio

AU - Maffioli, Margherita

AU - Breccia, Massimo

AU - Pugliese, Novella

AU - Betti, Silvia

AU - Giglio, Gianfranco

AU - Cappuccio, Antonietta

AU - Reale, Luigi

PY - 2018

Y1 - 2018

N2 - 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.

AB - 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.

KW - Burden of illness

KW - Indirect costs

KW - Myelofibrosis

KW - Narrative medicine

KW - Quality of life

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