The study used a 2022 reference year and a societal perspective, meaning that it included direct medical costs, direct non-medical costs and indirect productivity losses rather than focusing only on charges paid by the health system. Primary information came from a cross-sectional online survey conducted between April and October 2023. After one response was excluded because disease severity could not be established, the analytic sample contained 48 responses: 41 adults reporting for themselves and seven caregivers acting as proxies, four for pediatric patients and three for adults. Adults also completed the five-level EQ-5D-5L instrument assessing mobility, self-care, usual activities, pain or discomfort, and anxiety or depression.

National case counts were obtained from the Global Burden of Disease 2021 estimates for alopecia areata. These were combined with survey-derived proportions of mild and severe disease to estimate costs for two epidemiological scenarios. The prevalence-based scenario used 37,548.63 adult and 3,792.18 pediatric cases, while the incidence-based scenario used 65,413.8 adult and 6,964.62 pediatric cases. Survey-based unit costs were then extrapolated nationally. Treatment, medical services and associated expenses were costed from the bottom up; hospital costs were estimated from 72 discharges recorded nationally in 2022; and productivity losses were calculated with a hybrid approach that combined reported absence from work with national wage data.

Under the prevalence approach, the estimated annual cost for adults aged 20 or older was EUR 97.95 million, consisting of EUR 59.50 million for mild disease and EUR 38.45 million for severe disease. The incidence-based estimate was EUR 170.56 million, including EUR 103.61 million for mild cases and EUR 66.95 million for severe cases. Productivity losses were the largest adult cost component under both approaches, accounting for approximately 45.2% of the total. Associated expenses contributed 28.5%, medical services 14.2%, treatment 12.0% and hospitalizations 0.1%. When treatment spending was replaced with a lower-cost pharmaceutical-market scenario, estimated adult treatment expenditure fell to about 0.5% of the total and productivity losses rose to 51.2%.

For patients under 20, the prevalence-based annual estimate was EUR 3.35 million and the incidence-based estimate was EUR 6.37 million. Associated expenses were the largest pediatric component, contributing 41.8% and 40.4% of the two totals, while caregiver productivity losses accounted for 38.5% and 40.7%. Treatment represented 19.5% and 18.8%, respectively, and hospitalizations remained below 0.3%. Pediatric medical-service spending was not collected, so it was absent from these estimates. Overall, the findings indicate that the measurable burden fell mainly on patients, families and employers through non-medical spending and lost work rather than on hospitals through reimbursed inpatient care.

Average annual cost per adult patient was EUR 2,608.6 in the prevalence-based analysis and EUR 2,607.4 in the incidence-based analysis. The estimated cost was higher for mild adult disease, at EUR 3,248.3, than for severe disease, at EUR 1,999.4. The researchers said this should not be interpreted as evidence that severe alopecia areata is inexpensive. Mild patients were more likely to remain in full-time employment, making them eligible for measured absenteeism costs, whereas severe patients were more likely to be retired. The survey also found slightly higher treatment and medical-service spending among mild patients. Pediatric estimates showed the opposite pattern: the average was EUR 882.9 under the prevalence approach and EUR 915.1 under the incidence approach, with severe cases averaging EUR 1,991.3 compared with EUR 513.5 for mild cases.

Healthcare use in the survey was concentrated in outpatient care. Fifteen of the 41 adult patients reported general-practitioner visits for alopecia areata during the preceding year, while 23 reported specialist visits. Seven adults reported day admissions and six reported inpatient admissions. At the national level, only 72 hospitalizations carried a main diagnosis of alopecia areata in 2022, corresponding to an average inpatient cost of EUR 1,583.5 per adult episode and EUR 1,031.3 per child episode. The researchers interpreted the pattern as one consistent with management largely in ambulatory care, although they noted that uneven access to dermatology services, including in rural areas, may be an important constraint.

Quality-of-life results highlighted the psychological component of the disease. Among 27 adults who completed the EQ-5D-5L, 21 reported problems with anxiety or depression and 19 reported pain or discomfort. Nine reported problems with usual activities, four with self-care and none with mobility. Problems with anxiety or depression were also reported by six of the seven caregiver proxies. The mean adult EQ-VAS self-assessment of overall health was 51.0 on a scale from 0, representing the worst imaginable health, to 100, the best imaginable. Because the survey used a generic measure rather than a dermatology- or alopecia-specific instrument, the authors said that disease-specific and clinically validated mental-health measures may provide more sensitive estimates in future studies.

Several limitations constrain interpretation. Recruitment through Facebook and a patient association used convenience sampling, so respondents may have been more digitally connected, engaged in care or severely affected than the wider Romanian population; no response rate could be calculated. The adult sample was also predominantly female, urban and highly educated. Only four caregiver-reported pediatric patients supported the pediatric cost model, making those projections exploratory. The study performed no inferential statistics, relied on retrospective 12-month recall, and imputed missing cost data. Its national estimates also depended on modeled GBD 2021 case counts, an expert mapping between self-reported hair loss and GBD severity states, and hospital unit costs supplied by a private financial-controlling firm. Presenteeism, pediatric medical-service costs, specific expenses such as wigs and psychological counseling costs were not captured.

Despite those uncertainties, the analysis presents a first national accounting framework for alopecia areata in Romania and identifies where costs were estimated to arise. The authors call for larger, representative studies using validated productivity and disease-specific quality-of-life instruments. Their results suggest that planning for alopecia areata should extend beyond hospital expenditure to encompass ambulatory dermatology capacity, access across regions, out-of-pocket support and the effects of anxiety, depression and work disruption on patients and caregivers.

Subject of Research: Estimated societal costs, healthcare use and quality of life associated with alopecia areata in Romania

Article Title: On the economic burden of alopecia areata in Romania

Article References: Olaru, M., Tatu, A. L., Olteanu, R., Lapadatu, R., Vladescu, C., Strilciuc, S., & Nicolescu, A. C. (2026). On the economic burden of alopecia areata in Romania. Frontiers in Health Services, 6, Article 1943557. https://doi.org/10.3389/frhs.2026.1943557

Image Credits: AI Generated

DOI: 10.3389/frhs.2026.1943557

Keywords: alopecia areata, economic burden, cost of illness, Romania, productivity losses, out-of-pocket costs, healthcare utilization, quality of life, EQ-5D-5L, mental health, economic, burden

The research, led by Esther Gómez Botella of the Hospital General Universitario Dr. Balmis in Alicante and collaborators at the Alicante Institute for Health and Biomedical Research and Miguel Hernández University, was published in BMC Psychology. What makes the study distinctive is its selection policy: unlike many programs that exclude patients deemed psychologically unsuitable, the Alicante team excluded no one on psychological grounds. Every patient who proceeded to implantation between 2012 and 2022 had completed a standardized psychological assessment beforehand, allowing the researchers to ask, without the distortion of selection bias, whether baseline personality and symptom profiles actually shaped outcomes.

The tool they used was the Millon Clinical Multiaxial Inventory, third edition, a widely administered questionnaire that scores patients on twenty-four clinical scales spanning anxiety, depression, somatoform tendencies, personality patterns, and severe psychopathology. Each patient’s profile was recorded before surgery. The team then measured outcomes at one month, six months, one year, and two years after implantation, using instruments that are standard in modern pain research: a visual analogue scale for pain both at rest and during movement, the EuroQol five-dimension questionnaire for quality of life, a visual analogue scale for perceived overall health, and the Pittsburgh Sleep Quality Index for sleep.

The headline finding is emphatically positive. Before implantation, patients rated their resting pain at an average of 8.56 on a ten-point scale, and their movement-related pain at 9.39, scores that describe near-maximal, disabling discomfort. Two years later, those averages had fallen to 4.22 and 5.24 respectively, reductions of roughly 51 and 44 percent. More than half of the patients maintained at least a fifty percent reduction in pain at the two-year mark, a threshold clinicians regard as a meaningful clinical response rather than mere statistical noise.

The benefits extended well beyond raw pain scores. The average quality-of-life index on the EuroQol instrument climbed from a dismal 0.18 to 0.60, a shift that in health-economic terms corresponds to a dramatic recovery in everyday functioning. Patients’ self-rated overall health rose from 31.4 to 54.9 on a hundred-point scale, and sleep quality improved substantially, with Pittsburgh index scores falling from 15.5 to 10.1 as insomnia and fragmented rest eased. All of these changes were statistically robust, with p-values below 0.001, and, critically, they persisted across every follow-up visit over the entire two-year window, arguing against the gradual fading of benefit that has plagued some neurostimulation cohorts.

Against that encouraging backdrop, the psychological question yielded a deliberately cautious answer. The researchers used linear mixed-effects models, a statistical framework that can track repeated measurements within each individual while handling missing follow-up data gracefully, to test each of the twenty-four MCMI-III scales as a potential predictor of each of the five outcomes. Because twenty-four scales times five outcomes produces a hundred and twenty statistical comparisons, the team applied false-discovery-rate correction, a modern multiple-testing safeguard that filters out the spurious associations that inevitably emerge when so many hypotheses are examined simultaneously.

Several scales did show nominal, or uncorrected, associations with outcomes. The most consistent patterns pointed to schizoid personality traits predicting poorer quality of life and dysthymia, a chronic form of low-grade depression, predicting poorer perceived health. But none of these associations survived false-discovery-rate correction, and most became weaker still when the researchers adjusted for the Desirability validity scale, an MCMI-III measure that flags patients who answer in a socially flattering rather than candid manner. Notably, the cohort showed no clinically meaningful elevations on the severe personality and psychotic-spectrum scales, meaning the analysis could not test whether such severe profiles might matter.

The authors are careful about what their data do and do not demonstrate. Their findings, they conclude, neither support nor exclude a prognostic role for pre-implantation psychological screening; the results are best treated as hypothesis-generating material for prospective research rather than as a basis for deciding who deserves an implant. That distinction matters, because in practice psychological screening has sometimes functioned as a gatekeeping instrument, with patients denied neuromodulation on the basis of unvalidated cut-offs. This study’s no-exclusion design offers a rare window into what happens when that gate is left open: outcomes were strong across the board.

The study’s technical strengths include its adherence to the STROBE reporting guidelines for observational research, its use of IMMPACT-aligned outcome measures recommended by the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials, and sensitivity analyses using bootstrap confidence intervals to check that the results did not hinge on assumptions about statistical distributions. Its funding came from the Instituto de Investigación Sanitaria y Biomédica de Alicante, which played no role in the design, analysis, or decision to publish, and the authors declare no competing interests, an important transparency note in a field where device manufacturers are heavily involved.

The limitations are equally clear-eyed. Forty patients from a single center is a modest sample, and retrospective designs cannot control every confounding variable the way a randomized trial can. The two-year follow-up, though longer than most, still falls short of the decade-long horizon on which implanted devices operate. Nonetheless, the practical message for patients and clinicians is striking: spinal cord stimulation delivered substantial, durable relief across pain, mood-linked health perception, quality of life, and sleep, and the psychological questionnaires collected before surgery proved far better at describing patients than at predicting their futures. For now, the authors suggest, psychological assessment belongs alongside implantation as a support tool, not in front of it as a filter, and the definitive test of psychological prognostication awaits larger, prospective, deliberately designed studies.

Subject of Research: Psychological predictors of two-year outcomes after spinal cord stimulation for chronic pain

Article Title: Pre-implantation psychological assessment and two-year outcomes of spinal cord stimulation for chronic pain: a retrospective observational study

Article References: Gómez Botella, E., Gómez Salinas, L., Sastre Peris, Y., Bernabéu Juan, P., Pérez-Jover, V., & van-der Hofstadt Román, C. J. (2026). Pre-implantation psychological assessment and two-year outcomes of spinal cord stimulation for chronic pain: a retrospective observational study. BMC Psychology. https://doi.org/10.1186/s40359-026-05596-x

Image Credits: AI Generated

DOI: 10.1186/s40359-026-05596-x

Keywords: chronic pain, spinal cord stimulation, MCMI-III, psychological assessment, quality of life, sleep quality, neuromodulation, EQ-5D-5L, prognosis, pain management, retrospective study, Pre-implantation

The research team, led by Tido von Schoen-Angerer of the Charité Competence Center for Traditional and Integrative Medicine in Berlin together with colleagues from the University of Bremen, the Charité, the University Hospital Tübingen, the Robert Bosch Center for Integrative Medicine and Health, the Otto-Friedrich-University Bamberg and other institutions, set out to answer a question that earlier cross-sectional studies had left only partially resolved: not simply how many people use TCIM, but which illnesses they use it for, and whether they feel it helps. To do this, the questionnaire asked participants about fifteen distinct illness categories and assessed health-related quality of life using the EQ-5D-5L instrument, a widely used standardized measure that captures mobility, self-care, usual activities, pain or discomfort, and anxiety or depression on five severity levels each.

The disease-specific results reveal a clear pattern. The highest lifetime rates of TCIM use were reported for acute respiratory illnesses, at 55.9 percent, followed by chronic gastrointestinal illnesses at 51.4 percent and acute gastrointestinal illnesses at 49.2 percent. In other words, the conditions most commonly treated with complementary approaches are everyday ailments—colds, coughs, digestive complaints—that most people experience repeatedly over a lifetime. This finding complicates a common assumption that complementary medicine is primarily sought by patients with severe chronic disease for whom conventional treatment has failed. While chronic conditions certainly feature prominently in the data, the leading edge of TCIM use in Germany appears to be the self-management of common, non-life-threatening illness.

Perhaps the most consequential number in the study is the self-reported benefit. Across the fifteen illness categories, the proportion of users who reported that TCIM had helped them ranged from 61.4 percent to 86.2 percent, with a mean of 70.8 percent. That is a remarkably narrow and consistently high band given how different these conditions are, from acute infections to chronic pain and gastrointestinal disease. The authors also examined whether this perceived benefit declined among people in worse overall health, and found that it did not: individuals with poorer health-related quality of life on the EQ-5D-5L still reported substantial benefit from the therapies they used. This suggests that perceived benefit is not simply an artifact of generally healthy people rating mild interventions for mild problems.

The study also tested a hypothesis that has circulated in the complementary medicine research community for years: that the popularity of a therapy in the population might track the volume of scientific research devoted to it. When the researchers plotted TCIM use across disease categories against global research activity in those same categories, no apparent relation emerged. Usage patterns in the German population, in other words, do not mirror the distribution of published studies. People are not choosing complementary therapies for the conditions where the evidence base is strongest, at least not as measured by aggregate research output. This disconnect between research allocation and real-world utilization is one of the study’s more provocative implications, because it suggests that public demand and scientific prioritization are currently operating on separate tracks.

Methodologically, the survey is a cross-sectional design, meaning it captures a snapshot at a single point in time rather than following individuals forward. The sample of 4,065 respondents was recruited to be representative of the German online population within the 18-to-75 age range, and the analysis combined descriptive statistics with inferential testing. The researchers reclassified their fifteen illness categories into the WHO’s ICD-11 framework, the eleventh revision of the International Classification of Diseases, to allow comparison with international data. The study was approved by the Charité Ethics Committee and funded by the Karl and Veronica Carstens Foundation, which had no role in study design, data collection, analysis or publication. The authors note that the article was shared early as a citable, peer-reviewed accepted version subject to final editorial edits.

Context matters for interpreting these figures. Germany has an unusually deep institutional entanglement with natural and complementary medicine compared with many other countries. Naturopathy, or Naturheilkunde, has historical roots in German medical culture, and certain complementary treatments can be prescribed and reimbursed under the statutory health insurance system in specific circumstances. Previous large German health surveys, such as the German Health Update studies referenced by the authors, have already suggested frequent TCIM use, but the new survey adds the disease-specific granularity and the quality-of-life dimension that earlier work lacked. The 70 percent lifetime figure places Germany among the countries with the highest reported use of complementary medicine in Europe, and the 52 percent positive-attitude figure indicates that this is a mainstream phenomenon rather than a fringe practice.

The self-perceived benefit data deserve particular scrutiny, and the authors are careful about what they can and cannot claim. Perceived benefit is a subjective endpoint. It reflects patient experience, expectation effects, the natural course of self-limiting illness, and any genuine pharmacological or physiological activity of the treatments, all mixed together. For acute respiratory and gastrointestinal complaints, which often resolve on their own, high satisfaction rates do not by themselves establish efficacy. At the same time, patient-reported benefit is not medically meaningless: it is associated with adherence, satisfaction with care, and health-related quality of life, and it is precisely the kind of outcome that integrative medicine advocates argue conventional research designs underweight. The study documents what the population experiences and believes; it does not, and does not claim to, adjudicate clinical effectiveness for any specific therapy or condition.

The authors draw pointed conclusions for health policy. They argue that stakeholders in the German healthcare system should critically examine the high level of TCIM use, promote rigorous scientific evaluation of the most widely used therapies, integrate evidence-informed complementary medicine with conventional care, and ensure appropriate reimbursement through statutory health insurance. This is a notably balanced position. It neither dismisses the enormous public uptake as misguided nor accepts perceived benefit as a substitute for evidence. Instead it treats the prevalence data as a mandate for research investment: if seven in ten citizens use these approaches and most report benefit, the argument runs, then the evidence base should be built up to match the scale of real-world use, particularly given the observed mismatch between research activity and utilization patterns.

For the international readership watching the integrative medicine field, the German data offer a template for the kind of study that is increasingly needed elsewhere. By combining a representative sample, a standardized quality-of-life instrument, a broad set of illness categories mapped onto ICD-11, and explicit questions about perceived benefit, the survey moves the conversation beyond the crude question of whether people use complementary medicine toward the more useful questions of who uses it, for what, with what perceived result, and how that maps onto research priorities and insurance coverage. With 18 percent of German adults currently using TCIM and a majority viewing it favorably, the study makes clear that these therapies are already embedded in everyday healthcare behavior. The open question, which the authors explicitly place on the agenda of clinicians, researchers and insurers alike, is whether the scientific and regulatory infrastructure will be developed to match that reality.

Subject of Research: Population-level use and perceived benefits of traditional, complementary and integrative medicine across disease categories in Germany

Article Title: Treatment choices: insights into disease-specific use and self-perceived benefits of traditional, complementary and integrative medicine in Germany

Article References: von Schoen-Angerer, T., Wischnewsky, M., Jeitler, M., Brinkhaus, B., Ortiz, M., Hoffmann, R., & Kessler, C. S. (2026). Treatment choices: insights into disease-specific use and self-perceived benefits of traditional, complementary and integrative medicine in Germany. BMC Complementary Medicine and Therapies. https://doi.org/10.1186/s12906-026-05496-y

Image Credits: AI Generated

DOI: 10.1186/s12906-026-05496-y

Keywords: complementary medicine, integrative medicine, traditional medicine, Germany, cross-sectional survey, health-related quality of life, EQ-5D-5L, health care utilization, naturopathy, acupuncture, ICD-11, public health

The research, published in the journal Advances in Therapy, examined 119 patient–caregiver dyads recruited from two hospitals in a coastal province of eastern China: a large general tertiary hospital and a specialized cancer center. Between September 2024 and July 2025, researchers led by Peng Zhang of Shanghai University of Traditional Chinese Medicine and Feifei Chen of Shanghai Skin Disease Hospital surveyed patients diagnosed with colorectal cancer and the informal caregivers—overwhelmingly spouses and adult children—who accompanied them. Both members of each pair completed the same health questionnaire, allowing the team to compare quality of life within dyads on identical terms for the first time in this cancer population.

The instrument at the heart of the study was the EQ-5D-5L, a standardized health measure used worldwide. Respondents rate themselves across five dimensions—mobility, self-care, usual activities, pain and discomfort, and anxiety and depression—on five severity levels, and the responses are converted into a single utility score running from a floor of −0.391 to a ceiling of 1, representing full health. Because the scores are bounded in this way and cluster heavily near the top, the team used Tobit regression, a statistical approach designed for outcomes that are limited to a range, rather than ordinary linear models that could distort results at the ceiling. The work was anchored conceptually in the Dyadic Illness Management Theory and the Stress Process Model, frameworks that treat patients and caregivers as a single interacting unit rather than two separate clinical subjects.

The numbers told a striking story. Patients averaged a utility score of 0.747, reflecting the substantial burden of a disease that 79.83 percent of them reported as causing pain or discomfort and that 63.02 percent said interfered with their usual activities. Caregivers, by contrast, averaged 0.936—a figure close to population norms for healthy Chinese adults—yet beneath that apparently healthy surface lay a quieter burden. Among caregivers, pain and discomfort was the most frequently reported problem at 44.54 percent, followed closely by anxiety and depression at 43.70 percent. Nearly all caregivers reported no problems with mobility, self-care, or usual activities; the damage, in other words, was concentrated in the psychological dimension.

And that psychological dimension proved to be the hinge of the entire study. After adjusting for a prespecified set of patient and caregiver covariates, the Tobit analysis showed a statistically significant positive association between patient and caregiver utility scores (p = 0.045): when patients fared better, so did their caregivers. More revealing still, when the researchers modeled each caregiver dimension separately as a binary outcome, patients’ overall health status was significantly associated with caregiver anxiety and depression but not with caregiver pain. For every increase in a patient’s utility score, the odds of the caregiver reporting anxiety or depression problems fell dramatically—an odds ratio of 0.112, statistically significant at p = 0.026. The message is uncomfortable and clarifying at once: the caregiver’s mental health tracks the patient’s physical health more tightly than any other element of the caregiving experience.

The analysis also identified who among the caregivers was most vulnerable. Caregivers of patients at more advanced clinical stages reported worse health-related quality of life, consistent with the escalating symptom burden—nausea, bowel dysfunction, incontinence, and often postoperative stoma care—that advanced colorectal cancer imposes on households. Longer time since diagnosis, by contrast, predicted better caregiver quality of life, a pattern the authors interpret cautiously as possible adaptation. Previous research on family caregivers has found that roughly two years after a relative’s cancer diagnosis, caregivers’ well-being converges back toward that of the general population, and the present study’s average of about 460 days since diagnosis sits within that recovery window. Educational attainment also mattered: caregivers with higher education reported better quality of life, plausibly reflecting stronger health literacy, more effective coping strategies, and more favorable socioeconomic circumstances.

One counterintuitive finding deserves particular attention. Caregivers who provided more than three hours of care per day were less likely to report anxiety and depression than those providing fewer hours. The authors suggest that moderate, sustained involvement may build familiarity with the patient’s condition and strengthen caregiving self-efficacy, whereas caregivers contributing less time may remain tethered to outside work and other stresses that compound their worry. Intriguingly, the protective pattern did not extend to caregivers providing six to nine hours daily, hinting that the relationship between care hours and psychological well-being may be non-linear—a curve rather than a line—that larger studies will need to map.

The team took unusual care to stress-test its conclusions. Sensitivity analyses repeated the regressions with the full set of initially considered covariates, applied a two-part model separating the probability of reporting perfect health from the distribution of scores below it, and employed bootstrap resampling to gauge the stability of the estimates. The direction and magnitude of the effects held broadly consistent across these tests, though the bootstrap confidence interval for the patient–caregiver association did include the null value, signaling some statistical imprecision in a sample of this size. The authors are candid about this limitation, as well as the inherent constraints of a cross-sectional design: without longitudinal follow-up, the data cannot establish whether improving a patient’s health would causally lift a caregiver’s, only that the two move in lockstep. The sample was also drawn from a relatively developed region, and the authors note that socioeconomic gradients in caregiver health could be steeper in less affluent settings.

Even with those caveats, the implications for oncology practice are difficult to ignore. Five-year survival for colorectal cancer has climbed from roughly 50 percent in the mid-1970s to 65 percent between 2011 and 2017, meaning more households than ever live with the disease for years. With more than 1.92 million new colorectal cancer cases worldwide in 2022 and over 510,000 in China alone, the informal caregiving workforce is measured in the millions. Yet caregivers are almost never assessed in clinic; they appear on hospital wards as escorts, not as patients. This study suggests that omission is a clinical blind spot. Because caregiver distress concentrates in anxiety and depression, and because that distress mirrors the patient’s own health status, the authors argue for routine caregiver screening embedded in colorectal cancer nursing care and survivorship planning, with psychologically informed supportive care offered particularly to caregivers of patients with advanced disease or recent diagnoses. The patient and the caregiver, the data insist, are one system. Treating only half of it means treating the disease while ignoring the household that carries it.

Subject of Research: Health-related quality of life in colorectal cancer patients and their informal caregivers

Article Title: Association Between Health-Related Quality of Life In Patients with Colorectal Cancer and Their Informal Caregivers

Article References: Zhang, P., Chen, F., Jia, Y., Hong, L., Wang, Z., Zhao, J., Yang, Y., & Jiang, S. (2026). Association Between Health-Related Quality of Life In Patients with Colorectal Cancer and Their Informal Caregivers. Advances in Therapy. https://doi.org/10.1007/s12325-026-03789-9

Image Credits: AI Generated

DOI: 10.1007/s12325-026-03789-9

Keywords: colorectal cancer, informal caregivers, quality of life, EQ-5D-5L, patient–caregiver dyads, anxiety and depression, caregiver burden, cancer survivorship, supportive care, cross-sectional study, China, psychological distress

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: Qin, W., Tong, F., Zeng, C., Qian, Z., & Xu, Y. (2026). Caregivers’ proxy assessments of health-related quality of life in patients with hematologic malignancies. Supportive Care in Cancer, 34(10), Article 964. 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