More than one in three family carers report a large impact on their quality of life, according to new research
A new international study led by Picker Institute Europe, in collaboration with the Acute Leukaemia Advocates Network (ALAN) and the University of Hertfordshire, has revealed the significant toll that leukaemia can take on family members and partners who provide care and support.
The study, which analysed responses from 511 adult family carers across 76 countries, found that more than one in three (38%) experienced a very large impact on their quality of life as a result of caring for someone with leukaemia.
Researchers found that the burden on family carers was particularly high among those supporting people with acute forms of leukaemia. Nearly half (47%) of family carers in this group reported a very large impact on their quality of life, compared with one in four (25%) family carers supporting someone with chronic leukaemia.
The findings, published in Frontiers in Hematology, highlight the often-overlooked experiences of family carers, who play a critical role in supporting patients through diagnosis, treatment and recovery.
The study found that family carers providing more intensive support, particularly those spending 50 or more hours per week caring, reported the greatest impact on their wellbeing. Activities such as administering medication, providing personal care, managing finances and supporting children were associated with increased burden.
Researchers also found that communication and information provided by healthcare teams can make a positive difference. Family carers who reported that diagnoses and test results were not explained clearly experienced substantially poorer quality of life outcomes.
Professor Sam Salek, senior author of the study from the University of Hertfordshire, said:
“Our study shows that leukaemia affects the whole family, not just the patient. Many family carers experience a substantial impact on their lives, particularly when care demands are high. Recognising and supporting family carers is essential to improving care overall.”
Samantha Nier, co-author and representative of the Acute Leukaemia Advocates Network (ALAN), said:
“Advocacy organisations hear directly from families every day, and these findings reflect those experiences. This study provides evidence to strengthen calls for better information, and tailored support for family carers, and highlights the role advocacy networks can play in connecting people to help and shaping more responsive services.”
The study used the validated Family Reported Outcome Measure (FROM-16), a tool designed to assess how a patient’s illness affects the quality of life of family members and partners. The study concludes that integrating family carers' needs into leukaemia care pathways, improving healthcare communication and providing targeted support could help reduce family caregiver burden and improve outcomes for both family carers and patients.
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Notes to editors
- For media enquiries, please contact Picker’s Marketing and Communications team at [email protected], or phone: 01865 632 235.
- About the study: "Associations with the quality of life of adult family members or partners (informal carers) of people with leukaemia: results from a cross-sectional online global survey" was conducted by Picker Institute Europe, the Acute Leukaemia Advocates Network (ALAN), and the University of Hertfordshire. The study analysed responses from 511 adult family carers who completed the Family Reported Outcome Measure (FROM-16), a validated questionnaire that measures the impact of illness on family members' quality of life.
- About ALAN: The Acute Leukaemia Advocates Network (ALAN) is an international network of patient advocacy organisations dedicated to improving outcomes and quality of life for people affected by acute leukaemia and their families.
- Picker’s team of researchers and data scientists are available to support organisations in understanding and measuring patient and caregiver experience. For queries about our servicesor to request a call, please contact [email protected].