Key takeaways
- Pain and mobility are important, but its not the whole story.
Patients and the public both ranked pain and mobility among their top concerns. However, our research shows that cognition – a dimension not typically considered when measuring health – was also among the top concerns of both groups. We also see that patients ranked anxiety and depression more highly than the public. - Non-visible symptoms carry a heavy burden.
Tiredness, anxiety, pain, and cognitive difficulties may not be obvious to others, but they are common and often severe. These hidden burdens shape daily life and show why care must look beyond physical function. - Standard tools alone are not enough.
The conventional EQ-5D captures important aspects of health, but we have shown that it overlooks elements to patients as well as the public. This research suggests including cognition as a routine dimension when we measure health, to ensure our measurements of health align with the concerns and experiences of patients and the public. Tiredness may also be important in some disease contexts. - Patient voice should guide care and policy.
Differences between patient and public priorities highlight the importance of incorporating patient-reported outcomes into both clinical practice and value assessment. Doing so ensures therapies are recognized not just for controlling disease and meeting clinical markers, but also for improving patients’ quality of life — measured and valued by patients themselves.
What is the health-related quality of life of people with acute leukemia?
Members of the general public and people living with acute leukemia (AL) were asked to complete a questionnaire about their health-related quality of life. The usual questionnaire is called the EQ-5D and it is commonly used to make decisions in healthcare. It has five questions about different dimensions of health: pain/discomfort, anxiety/depression, ability to participate in usual activities; mobility; and ability to look after one’s self (self care).
In this study, we asked people to complete the usual EQ-5D, and then we added two more dimensions we thought would be relevant to people with AL: tiredness and cognition. In each version, people described their experience on each dimension, from “no problems” to “extreme problems”. The infographic below indicates the percentage of people that reported having some problems on each dimension.
| % of people with AL that reported problems with… | ||||||
| Tiredness* | Pain / discomfort | Anxiety / depression | Usual activities | Mobility | Cognition* | Self-Care |
| 97% | 91% | 90% | 86% | 63% | 56% | 42% |
| Compared to these %’s in the general population… | ||||||
| 73% | 58% | 50% | 24% | 24% | 38% | 13% |
*Non-core EQ-5D dimensions, i.e., bolt-ons
With the usual EQ-5D questionnaire, people with AL reported having particular problems with pain/discomfort, anxiety/depression, and doing their usual activities. The percentages of people in the general population reporting problems on these dimensions were much lower in comparison, illustrating the impact of AL on health-related quality of life. When we added the two additional dimensions, though, we found that almost 100% of persons with AL had problems with tiredness, and more than half experienced cognition problems. This is an important finding, because it means that the usual EQ-5D is overlooking some of the problems associated with AL.
We also wanted to understand how health-related quality of life might differ in people that have different characteristics e.g., older/younger, male/female, type of AL. We found that:
People with a longer disease duration…
…had better health-related quality of life
and
People with prior relapse experience…
…had worse health-related quality of life
The longer disease duration finding may be because the people that feel the worst might not participate in research studies like this (known as selection bias) or alternatively that, over time, people adjust and find better ways to cope with their illness (known as adaptation). The relapse history finding could be because of the impact of the relapse itself, and/or its treatment.
Which aspects of health-related quality of life matter most to people with acute leukemia?
In addition to asking people about their problems on the different dimensions of health, we asked them to rank which aspects of health matter most to them. This was done using a “best-worst scaling” survey, where respondents chose the most and least important health problems in different scenarios.
| #1 Most important | #2 | #3 | #4 | #5 | #6 | #7 Least important | |
| Patients | Pain / discomfort | Cognition* | Mobility | Anxiety / depression | Usual activities | Tiredness* | Self-care |
| General Public | Pain / discomfort | Mobility | Cognition* | Usual activities | Self-care | Anxiety / depression | Tiredness* |
*Non-core EQ-5D dimensions, i.e., bolt-ons
Patients and the general public agreed that being free from pain/discomfort is most important. Beyond this, patients placed greater emphasis on cognition, while the public focused more on mobility and self-care. Patients also rated tiredness as slightly more important than the public did. These differences reflect the lived experience of acute leukemia – patients adapt to some daily limitations but continue to prioritize symptoms that affect how they think, feel, and cope day to day.
We also wanted to explore how patients and the general population differ in the way they report problems across health dimensions, and whether visible versus non-visible symptoms are valued differently. We found that:
Not all health problems are visible
While everyday tasks can be challenging, people with acute leukemia report far greater problems with non-visible symptoms such as pain/discomfort, tiredness, anxiety/depression and cognitive difficulties.
These hidden burdens are common – with severe tiredness and anxiety/depression affecting around one in three patients – and they highlight why patient-reported outcomes must look beyond what can be seen from the outside.
What this means for patients and advocates
Improving care for people with acute leukemia means listening closely to what matters most to patients. This goes beyond controlling the disease, it’s also about recognizing and addressing the hidden symptoms that affect daily life. By capturing these experiences in routine care and research, we can make sure treatment strategies and health policies reflect the patient’s voice.
In everyday care
Treat the whole person, not just the disease
- Pain/discomfort, fatigue, cognition and anxiety/depression should be regularly assessed.
- Early detection of these problems can guide better support and treatment
Focus where patients focus
- Patients report that tiredness and cognition matter just as much as physical function.
- Making space to discuss these symptoms in clinic visits ensures patients feel heard.
In treatment and research decisions
Value what improves daily life
- Treatments that control disease, but also reduce fatigue, pain/discomfort or cognitive difficulties can make a big difference.
- These benefits may not always be captured if decisions rely only on “standard” measures.
Tools must evolve to reflect patient voice
- Adding “bolt-on” questions on cognition and tiredness helps capture what matters most.
- This ensures future studies and health policy decisions take patient priorities into account.
This research paper, Understanding the preferences of people with acute leukemia for different health outcomes, was commissioned and funded by the Acute Leukemia Advocates Network (ALAN).
