Caregivers May Be Reliable Voices for Blood Cancer Patients’ Quality of Life

For patients battling cancers of the blood and bone marrow, answering a quality-of-life questionnaire can be a surprisingly heavy burden. Leukemias, lymphomas, and myelomas bring relentless fatigue, infections, pain, and psychological distress, and during the most difficult phases of treatment many patients are simply too ill to describe how they feel. A new study from researchers at Xiangya Hospital of Central South University in Changsha, China, offers a practical answer to this long-standing clinical dilemma: family caregivers can step in as credible proxies, rating their loved ones’ health-related quality of life with enough accuracy to be clinically meaningful, though their own emotional state can color what they report.

The research, published in the journal Supportive Care in Cancer, enrolled 203 patient-caregiver dyads in which the patient had a hematologic malignancy. Each member of the pair independently completed the EuroQol 5-Dimensions 5-Levels questionnaire, known as the EQ-5D-5L, one of the most widely used instruments in health-outcomes research. The tool asks respondents to rate themselves on five dimensions of health: mobility, self-care, usual activities, pain or discomfort, and anxiety or depression, each on a five-level severity scale. Responses can be summarized as a single utility score, a number between 0 and 1 that anchors full health at 1 and death at 0, making the measure useful both for bedside assessment and for health-economic calculations such as quality-adjusted life years.

The central question was straightforward: when a caregiver answers these questions on a patient’s behalf, does the answer resemble what the patient would have said? The answer, by the statistical standards of psychometrics, was largely yes. Caregiver proxy ratings of the EQ-5D-5L utility score correlated strongly with patient self-ratings, with a correlation coefficient of 0.679, a value conventionally interpreted as a strong positive association. At the level of individual dimensions, correlations ranged from 0.518 to 0.695, all statistically significant. Agreement, a stricter test than correlation because it penalizes systematic bias, was also solid: the intraclass correlation coefficient for utility scores was 0.730, with a 95 percent confidence interval of 0.658 to 0.788, a range that researchers typically classify as good reliability.

Dimension-by-dimension, the picture held up. Exact agreement between what caregivers reported and what patients reported about themselves ranged from 66.5 percent to 84.2 percent across the five EQ-5D-5L domains. In practical terms, when a caregiver marked a patient as having no problems walking, or severe pain, or difficulty with usual activities, that judgment matched the patient’s own answer roughly two-thirds to more than four-fifths of the time. For a population in which fatigue, cytopenias, and treatment toxicity often make self-report impossible, the researchers conclude that caregivers may serve as reliable proxies for assessing health-related quality of life in patients with hematologic malignancies.

Yet the study also uncovered a systematic wrinkle that clinicians should not ignore. Caregivers who were themselves struggling emotionally tended to paint a darker picture of their relative’s condition than the patients did. Greater anxiety symptoms among caregivers, measured with the seven-item Generalized Anxiety Disorder scale, were significantly associated with overestimation of the patients’ symptom burden, with a correlation coefficient of 0.408. Depressive symptoms, assessed with the nine-item Patient Health Questionnaire, showed a similar but weaker association, at 0.288. Both relationships were highly statistically significant. In other words, an anxious or depressed caregiver watching a loved one through chemotherapy may project some of that distress onto the patient’s own experience, rating symptoms as worse than the patient reports them to be.

This phenomenon, known in the literature as the proxy-rating bias, has been documented across cancer care and beyond. Previous systematic reviews of caregiver responses for patient quality-of-life assessment in adult oncology have found that proxies generally track patient self-reports reasonably well but tend to overestimate physical and emotional symptom burden. Studies in glioma patient-caregiver dyads have similarly shown that the psychosocial functioning of the rater influences rating accuracy, and research in dementia care has revealed substantial discrepancies between self- and proxy-rated quality of life. The new findings extend this evidence into hematologic malignancies, a population that has historically been underrepresented in quality-of-life research compared with solid tumors, partly because the episodic and often acute nature of blood cancers complicates longitudinal patient-reported outcome collection.

The methodological design of the study reflects careful attention to measurement quality. Beyond the EQ-5D-5L, caregivers completed the Family APGAR Index, a brief instrument capturing their perception of family functioning across adaptability, partnership, growth, affection, and resolve. The choice of the five-level version of the EQ-5D rather than the older three-level version matters as well: the five-level format reduces ceiling effects and improves discrimination among patients with mild to moderate impairment, which is essential when the goal is to detect subtle differences between raters. The Chinese EQ-5D-5L value set was used to compute utility scores, anchoring the analysis in a validated preference-based framework. Agreement statistics followed established conventions, with intraclass correlation coefficients interpreted according to widely accepted guidelines and categorical agreement benchmarked against classic standards for observer agreement research.

The clinical implications are twofold. First, the results legitimize a pragmatic workflow: when a patient with a hematologic malignancy cannot complete a quality-of-life assessment, whether because of severe illness, cognitive impairment, or the sheer exhaustion of intensive therapy, a well-informed caregiver’s report can stand in with acceptable fidelity. This matters for symptom monitoring, which randomized trials in oncology have shown can improve quality of life and even survival when patient-reported outcomes are systematically collected during routine treatment. It also matters for health-economic evaluation, where proxy utility scores are often needed to estimate the value of new therapies for blood cancers, a field in which cost-effectiveness analysis has grown rapidly. Second, the findings argue for screening caregivers themselves. Because caregiver anxiety and depression distort proxy ratings, treating the caregiver’s psychological distress is not only an act of compassion but also a way to sharpen the accuracy of the clinical data the care team depends on.

The study was approved by the Xiangya Hospital Ethics Committee with written informed consent obtained in accordance with the Declaration of Helsinki, and the authors report no competing interests. The work was supported by the Hunan Provincial Natural Science Foundation of China and the China Postdoctoral Science Foundation. The research team, led by corresponding author Yajing Xu with first author Wei Qin, notes that data are available from the lead and corresponding authors upon reasonable request. As blood cancers continue to impose a rising global burden, with incidence and disability from hematologic malignancies climbing over the past three decades, the message of this study is quietly empowering: the people who know patients best, and who sit beside them through the hardest days, can be trusted to give voice to what those patients are too sick to say, provided clinicians remember to ask how the storytellers themselves are doing.

Subject of Research: Caregiver proxy assessment of health-related quality of life in patients with hematologic malignancies

Article Title: Caregivers’ proxy assessments of health-related quality of life in patients with hematologic malignancies

Article References: Caregivers’ proxy assessments of health-related quality of life in patients with hematologic malignancies. (n.d.). https://doi.org/10.1007/s00520-026-11206-8

Image Credits: AI Generated

DOI: 10.1007/s00520-026-11206-8

Keywords: hematologic malignancies, caregivers, proxy assessment, health-related quality of life, EQ-5D-5L, blood cancer, patient-reported outcomes, anxiety, depression, family functioning, symptom burden, supportive care