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 Michele; Paoli, Chiara; Palumbo, Giuseppe A.; Bonifacio, Massimiliano; Cilloni, Daniela; Andriani, Alessandro; Giacosa, Attilio; Turri, Diamante; Elli, Elena Maria; Falcone, Antonietta; Anaclerico, Barbara; Musto, Pellegrino; Renzo, Nicola Di; Tiribelli, Mario; Zambello, Renato; Spinosa, Caterina; Ricco, Alessandra; Raucci, Letizia; Martino, Bruno; Annunziata, Mario; Pascale, Silvia; Liberati, Anna Marina; Nasa, Giorgio La; Maffioli, Margherita; Breccia, Massimo; Pugliese, Novella; Betti, Silvia; Giglio, Gianfranco; Cappuccio, Antonietta; Reale, Luigi

doi:10.1007/s11136-018-1827-2

Cited by 14 publications

(20 citation statements)

References 42 publications

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“…The impact of providing informal care on a caregivers' employment was measured in eight studies by valuing the loss of income resulting from absence from work and/or productivity loss while at work (Guerriere et al, ; Jassem, Penrod, Goren, & Gilloteau, ; Jeon & Pohl, ; Palandri et al, ; Syse et al, ; Van Houtven et al, ; Wan et al, ; Yu et al, ). Reduced productivity while at work due to providing care (e.g.…”

Section: Resultsmentioning

confidence: 99%

“…The cost of care time was valued by measuring the time spent providing informal care, including time spent on ADL, instrumental activities of daily living (IADL), household activities or time spent with the care recipient at the hospital or medical appointments (Bayen et al, ; Guerriere et al, ; Hanly, Céilleachair, Skally, O'Leary, Kapur, et al, ; Hanly, Céilleachair, Skally, O'Leary, Staines, et al, ; Hanly, Maguire, Balfe, O'Sullivan, & Sharp, ; Palandri et al, ; Van Houtven et al, ; Yabroff & Kim, ; Yu et al, ). Studies using the PGA method to value care time reported the value of informal care as $975 to $19,112 per month with a mean of $4,809 per month ( SD = $6,441; Table ).…”

Section: Resultsmentioning

confidence: 99%

“…This approach can be used to apply different unit costs depending on the activity performed (van den Berg et al, ); for example, a lower unit cost can be applied to time spent on domestic activities compared to time spent providing more specialised care. Few studies identified in this review that used the PGA varied the unit cost based on activity type (Hanly, Céilleachair, Skally, O'Leary, Staines, et al, ; Hanly et al, ; Palandri et al, ). Additionally, when the unit cost was not adjusted based on activity type, the profession selected to derive unit costs varied between studies, affecting the overall cost estimation.…”

Section: Discussionmentioning

confidence: 99%

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The direct and indirect financial costs of informal cancer care: A scoping review

Coumoundouros

Brahim

Lambert

et al. 2019

Health Soc Care Community

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Informal caregivers are the primary source of support for cancer patients, providing assistance with household tasks, medical care and emotional support. These responsibilities often result in high levels of emotional, physical, social and financial burden for the caregiver. The aim of this study was to perform a scoping review exploring what is known regarding the financial costs experienced by caregivers and identify gaps in the literature. Seven databases were searched for articles published between May 2008 and May 2018 related to direct and indirect costs of informal cancer care. Included articles reported on the costs incurred by cancer caregivers as a dollar value, relied on caregiver‐reported costs and were peer reviewed. A total of 19 studies met the inclusion criteria. These studies reported out of pocket costs‚ opportunity costs of informal care time and caregiver time loss from paid employment. Care time was the largest source of cancer caregiver costs, averaging $4,809 per month when valued using the proxy good method or $2,877 per month when the opportunity cost approach was used. Caregiver costs were highest when the care recipient was in the palliative phase of the disease. There was an absence of literature reporting costs for cancer caregivers in low and middle income countries and none of the included studies considered costs related to the caregivers' medical expenditures. There were many challenges when comparing the costs across studies due to variations in the type of expenses reported and the methods used to value expenses. Quantifying the financial costs associated with being an informal caregiver can facilitate the communication of the financial burden caregivers experience, potentially spurring the development of policies and programs to reduce their financial burden and better support cancer caregivers.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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The direct and indirect financial costs of informal cancer care: A scoping review

Coumoundouros

Brahim

Lambert

et al. 2019

Health Soc Care Community

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“…Previous studies addressing the extent of spouse wage losses differed in the types of cancer considered (eg, any type, lung cancer, and colorectal cancer), included mixed stages of disease or focused only on advanced disease, and were conducted in countries with different insurance and health care systems (eg, Canada, the United States, China, and Norway) . In these studies, wage loss estimates were calculated for different time periods (range, 1 day of work to 8 years after diagnosis) and with various data sources (self‐reported data and administrative databases) and methods of valuing time lost from work.…”

Section: Discussionmentioning

confidence: 99%

“…3 Recent systematic 9 and scoping reviews 10 have reported that cancer negatively affects the employment of spouses of patients with cancer in terms of decreased productivity and work absences. Although a few studies have estimated how decreased productivity and work absences translate into spouses' wage losses, [11][12][13][14][15][16][17][18][19][20][21][22][23][24][25][26] most have focused on cancers other than breast cancer 17,18,[24][25][26] or mixed groups including breast cancer with varying disease stages 11,12,[14][15][16]23 Cancer March 1, 2020 or only advanced disease, 13,[19][20][21][22] and this makes it impossible to isolate specifically the effect of nonmetastatic breast cancer on spouse wage losses. Thus, information is needed to understand the extent to which spouses experience wage losses as a result of nonmetastatic breast cancer.…”

Section: Introductionmentioning

confidence: 99%

Wage losses among spouses of women with nonmetastatic breast cancer

Humphries

Lauzier

Drolet

et al. 2019

Cancer

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Background The aim of this study was to evaluate the wage losses incurred by spouses of women with nonmetastatic breast cancer in the 6 months after the diagnosis. Methods A prospective cohort study of spouses of women diagnosed with nonmetastatic breast cancer who were recruited in 8 hospitals in the province of Quebec (Canada) was performed. Information for estimating wage losses was collected by telephone interviews conducted 1 and 6 months after the diagnosis. Log‐binomial regressions were used to identify personal, medical, and employment characteristics associated with experiencing wage losses, and generalized linear models were used to identify characteristics associated with the proportion of usual wages lost. Results Overall, 829 women (86% participation) and 406 spouses (75% participation) consented to participate. Among the 279 employed spouses, 78.5% experienced work absences because of breast cancer. Spouses were compensated for 66.3% of their salary on average during their absence. The median wage loss was $0 (mean, $1820) (2003 Canadian dollars). Spouses were more likely to experience losses if they were self‐employed or lived 50 km or farther from the hospital. Among spouses who experienced wage losses, those who were self‐employed or whose partners had invasive breast cancer lost a higher proportion of wages. Conclusions Although spouses took some time off work, for many, the resulting wage losses were modest because of compensation received. Still, the types of compensation used may hide other forms of burden for families facing breast cancer.

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Disabled, invisible and dismissed—The lived experience of fatigue in people with myeloproliferative neoplasms

et al. 2022

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Background Myeloproliferative neoplasms (MPNs) are rare haematological cancers. Several studies report the most common MPN symptom leading to reduced quality of life is fatigue. Yet, how fatigue affects the lives of people with MPN is not well described. Aims The purpose of this qualitative study is to better understand the lived experience of fatigue associated with MPN. Methods and results People with MPN who had experienced fatigue were invited to complete an online survey and if eligible, then to participate in semi‐structured interviews and focus groups, exploring their experiences of fatigue. Thematic analysis of interview transcripts by two researchers produced themes describing the lived experience of fatigue. Twenty‐three people with MPN participated in seven interviews and four focus groups. Qualitative data revealed how fatigue significantly affected participants' experiences of functional, social, family and emotional wellbeing. Participants reported that fatigue was infrequently acknowledged or addressed by health professionals, and a lack of information or support to manage their fatigue. Four themes including 12 sub‐themes describe the experience of fatigue in MPN: (1) the distress of the MPN diagnosis, (2) sensations of fatigue, (3) daily life and emotional burden with fatigue and (4) how people managed their fatigue with limited guidance. Conclusion Fatigue in MPN is common, debilitating and distressing. It affects all aspects of health, wellbeing and life. Health professionals could affect patients' lives substantially by acknowledging and understanding fatigue in MPN, including contributing factors and potential opportunities for management. More systematic data describing the causes and management of MPN fatigue is needed.

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

Abstract: 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.

Cited by 14 publications

References 42 publications

The direct and indirect financial costs of informal cancer care: A scoping review

The direct and indirect financial costs of informal cancer care: A scoping review

Wage losses among spouses of women with nonmetastatic breast cancer

Disabled, invisible and dismissed—The lived experience of fatigue in people with myeloproliferative neoplasms

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