Today, the Acute Leukemia Advocates Network (ALAN) and the Office of Health Economics (OHE published a first-of-its-kind qualitative study of informal carers across 6 countries.
- A first-of-its-kind multinational qualitative survey of informal carers brings to life the multi-dimensional burden of providing informal care to someone living with acute leukemia (AL).
- 58% of informal carers experienced a strain so severe that clinicians may deem them at risk of further support, as indicated by a validated quality of life measure.
- This burden is stratified by gender, employment and lifestage, with women and fulltime workers particularly strongly affected by the burden of caregiving responsibilities.
- Healthcare systems need to better consider the impact on caregivers– this also allows for a more accurate representation of the burden of the disease beyond that on the individual patient, which can inform development of new treatments.
Today, the Acute Leukemia Advocates Network (ALAN) and the Office of Health Economics (OHE) published a first-of-its-kind qualitative study of informal carers across 6 countries. It brings to life the social, economic, mental and physical burden of providing informal care to someone living with acute leukemia (AL), a cancer of the white blood cells, which progresses rapidly and aggressively.
With over 2,900 people in the UK diagnosed with AL each year, the findings suggest that there could be thousands of carers in the UK struggling without adequate support. AL progresses rapidly, requires intensive treatment and often leaves patients heavily dependent on family or friends – who act as unpaid, informal carers– for day-to-day support.
However, the impact of informal caregiving is understudied. Recognising this burden is crucial for clinical practice, health technology assessment (HTA), and the development of interventions that address both the needs of patients and carers.
60 informal carers1 — 20 each from the UK and US, and 5 each from France, Germany, Italy and Spain – were asked questions about the patient’s diagnosis and how they became a carer, their experience of caregiving as well as questions about their involvement in decision-making and which aspects of treatment they and the person they care for prefer.
All carers interviewed were asked to respond to the FROM-16 (Family Reported Outcome Measure–16)2, where total score ranges from 0 to 32, with higher scores indicating greater impact on the family member’s quality of life.
- Over 58% of respondents scored in the highest two FROM-16 score bands; indicating a ‘very large’ to ‘extremely large’ burden, suggesting that many carers of people with AL could be deemed by clinicians to be at risk of requiring support services such as mental health support.
One of the most prominent themes was the complexities of balancing existing responsibilities with the additional demands of caregiving, meaning carers often struggle to maintain the boundaries between their relationships to the person they care for, or deprioritizing other aspects of their lives and relationships.
“I’m also worried about my daughter who is also affected. She has the same panic attacks I have, often at school.”
DE4: Patient’s Female Partner
“It feels like my role has shifted from being a wife to a nurse, or even a maternal figure, which I don’t like at all.”
FR2: Patient’s Female Partner
“Everyone always shows a lot of understanding and says, “I can understand, no problem”, but nobody ever thinks to come round and help or anything like that.” DE5: Patient’s Daughter
- Carers overwhelmingly prioritize patient quality of life and wishes when participating in clinical treatment choices, often at the detriment of their own.
For many carers, the prospect of having to make future treatment decisions carries an additional mental toll; these concerns mainly relate to the impact on the patient, the possibility of losing their loved one and sometimes the continued responsibilities associated with caregiving. Many reported experiencing elevated levels of anxiety and depression, often stemming from the emotional burden of caregiving, uncertainty about disease progression, and the demands of navigating complex medical systems.
“She just lets me make the decisions. She doesn’t really want to make any decisions and it was the same… my dad had dementia and she left everything to me, and we would sit there in these meetings and she’d say, “No my daughter makes all the decisions”. So, is it a burden? I don’t feel it a burden.”
UK13: Patient’s Daughter
“I felt a bit overwhelmed. I was like: “This is my mother’s life.” What am I supposed to say? It doesn’t feel nice when you have to make decisions about someone else’s life.”
DE5: Patient’s Daughter
- Carers reported an inability to plan for the future, with many reporting the necessity of living day to day, without thinking about long-term plans like vacations and retirement. This is compounded by the significant impact of uncertainty around treatment symptoms, achieving remission and planning for the future in general.
“Also, being aware that you live one day at a time. You don’t have to make huge plans for the future because you never know what might happen.”
IT3: Patient’s Daughter
“You just don’t know what to expect every day and going into this blindly and every day you’re making decisions or trying to figure out what to do and what not to do. It’s a guessing game”
US17: Patient’s Male Partner
- Women and those in full-time employment are hit hardest, with social isolation, shrinking career opportunities compounding the burden. The hidden economic cost of caregiving to families, businesses, and the broader economy remains largely unmeasured.
However, many also described a strengthened sense of mutual commitment that helped them navigate difficult times. Most carers noted that their relationship with the patient had grown stronger through the shared journey, although some carers looking after their partners reported significant relational strain.
“I quit my job, and my job is just my husband, honestly.”
US4: Patient’s Female Partner
“We’re facing this issue together has brought this sense of unity, because we communicate more now very openly about the fears, hopes, the feelings about the plans for the future and our daughter. […] The times that I probably should have been at work, now we spend it together. So, I’d say it’s really improved in closeness, more intimacy.”
UK3: Patient’s Male Partner
“Our relationship almost didn’t survive. We came close to separating. Our lives have changed drastically”
FR3: Patient’s Male Partner
These findings have implications for healthcare policy – particularly in evolving health technology assessment (HTA) methods that increasingly consider family spillover effects, although these continue to be limited in practice.
For example, treatments that shorten hospital stays, simplify dosing or minimise toxicities can yield direct and indirect benefits for carers, such as reduced anxiety, better sleep, and preserved family routine, as well as financial and economic gains through sustained employment and productivity. Failing to count these spillovers in cost-effectiveness analyses of treatments risks systematically undervaluing innovations and supportive care services that benefit carers as well as patients.
While HTA agencies such as NICE in the UK are increasingly open to including carer burden where evidence shows a substantial effect, this inclusion remains limited in practice, and is often constricted to a number of conditions, such as pediatric and rare diseases.
It is essential to ensure carers receive appropriate support, and that healthcare professionals and decision-makers recognize this burden. The report proposes:
- Including carers in the clinical pathway: practical steps could include mental health screening for carers in AL clinics and clear referrals to counselling, respite, and financial advice, timed to key stress points such as at diagnosis, onset of treatment, and hospital discharge.
- Recognising carers in treatment development: considering the perspectives and experiences of carers can help to ensure that, in the future, treatments and strategies developed in AL can benefit both patients and carers alike.
- Flexible workplace policies for carers to provide practical support for those in employment, recognising the dual burdens they face
Notes to Editors
The full report is available online at: Capturing the lived experiences of informal care in acute leukemia – OHE
Contact
For further details, including high-resolution photos, or to arrange a briefing or interview please contact:
Lishani Ramanayake
Media and PR Officer
Office of Health Economics
1 There was a near-even split between the genders of respondents, with 47% male and 53% female carers interviewed. More than half the carers surveyed were aged between 31 and 50, while 38% were aged between 51 and 70; 7% were under 30 and 3% were over 70.
38% of carers were caring for a parent; 35% for their partner, and a smaller proportion of carers were caring for their sibling (15%), their child (5%) or another relation (5%).
The study did not include bereaved carers on the grounds that this would likely generate themes beyond the scope of the study, and cause undue distress for interviewees.
2 FROM-16 is a questionnaire designed to assess the impact of a patient’s illness on the quality of life and wellbeing of their family members or partners. It can measure the secondary burden of disease on family members, informing clinical decisions and research across various medical conditions. The FROM-16 has two domains: Emotional (6 items, max score 12) and Personal and Social Life (10 items, max score 20). Each item has three response options (not at all, a little, a lot), scored 0-2 points. The total score ranges from 0 to 32, with higher scores indicating greater impact on the family member’s quality of life.
About ALAN
- ALAN is:
- an independent global network of patient organisations
- dedicated to changing outcomes of patients with acute leukemia
- by strengthening patient advocacy
- It aims to:
- build capacity in the members of the network – deliver tailored services to acute leukemia patients and carers on the national level
- join forces between organisations across countries – e.g. on the policy and research level
- ALAN has a number of key activities:
- developing patient information and specific support for patients with acute leukemias and their carers in all countries;
- strengthening patient organisations by sharing best practices and providing toolkits in patient advocacy;
- creating awareness about acute leukemias and how to better support leukemia patients;
- advocating for better treatment, care & access to healthcare services;
- collaborating with other initiatives and stakeholders with similar goals.
- ALAN’s website : www.acuteleuk.org
About the Office of Health Economics
With over 60 years of expertise, the Office of Health Economics (OHE) is the world’s oldest independent health economics research organisation. Every day we work to improve health care through pioneering and innovative research, analysis, and education.
As a global thought leader and publisher in the economics of health, health care, and life sciences, we partner with Universities, Government, health systems and the pharmaceutical industry to research and respond to global health challenges.
As a government–recognised Independent Research Organisation and not–for–profit, our international reputation for the quality and independence of our research is at the forefront of all we do. OHE provides independent and pioneering resources, research and analyses in health economics, health policy and health statistics. Our work informs decision–making about health care and pharmaceutical issues at a global level.
All of our work is available for free online at www.ohe.org