The research team, led by Eilidh M. Duncan of Myeloma Patients Europe in Brussels, brought together an unusually diverse group of 38 participants to tackle the problem. Rather than consulting only clinicians or researchers, the investigators recruited patients with direct experience of CAR-T or bispecific antibody treatment, informal family carers, patient advocates from myeloma, lymphoma, and leukaemia communities, academic researchers, trialists, pharmaceutical industry representatives, and officials from regulatory and health technology assessment bodies, including the FDA and EMA. Data came from 14 one-to-one interviews with 16 participants and two online focus groups involving 15 and 19 participants respectively. Transcripts were analysed using a deductive-inductive thematic approach with double coding by independent researchers, a methodological rigor that strengthens the credibility of the resulting themes.

The technical context makes the challenge clear. CAR-T therapy involves engineering a patient’s own T cells to recognise cancer cells, while bispecific antibodies, or BsAbs, are laboratory-made molecules that physically link T cells to malignant cells. Both can trigger cytokine release syndrome, an immune overreaction causing fever, nausea, headache, low blood pressure, and potentially multi-organ failure. They can also cause immune effector cell-associated neurotoxicity syndrome, or ICANS, a neuropsychiatric condition ranging from mild tremor and confusion to haemorrhage, coma, and death. According to the study, CRS occurs in roughly 87 percent of CAR-T patients and 67 percent of those receiving BsAbs, while neurotoxicity affects 40 to 64 percent of CAR-T recipients, with 27 percent requiring intensive care admission. These acute toxicities typically emerge within one to four weeks after treatment, yet longer-term experiences are rarely assessed or reported.

One of the most striking findings concerns the logistical maze surrounding CAR-T treatment. Because the therapy is only available at specialised centres, patients frequently travel more than 100 kilometres for infusion and hospitalisation, then return to local providers for follow-up. This fragmentation across multiple treatment sites complicates PROM data capture and contributes to missing data. Participants also highlighted a sobering measurement paradox: patients experiencing the worst toxicities, such as cognitive impairment from ICANS or severe CRS, are often too unwell to complete questionnaires at all. As one researcher explained, the data dip between pre-lymphodepletion and week two captures only the sick patients who are still fit enough to fill out forms, not the sickest ones, making the reasons for missing data critically important to understand.

Bispecific antibodies present their own distinct measurement headache. Unlike CAR-T, which is a fixed-duration treatment, BsAbs involve continuous administration with a wide variety of side effects occurring over different time periods. Participants described agents such as talquetamab, a GPRC5D-targeting bispecific, which produces gastrointestinal effects, skin toxicity, complete taste loss, falling nails, itchy rashes, and weight loss. Some symptoms resolve over several months while others, like taste changes and weight loss, persist indefinitely. These treatment-specific domains fall outside the scope of generic instruments such as the EORTC QLQ-C30, which was designed for broad applicability rather than therapy-specific sensitivity. A recent review found 15 distinct PROMs used within just 16 CAR-T studies, highlighting the heterogeneity that undermines evidence synthesis across trials.

The timing of assessments emerged as a central controversy. Participants broadly agreed that baseline measurements for CAR-T and BsAbs trials should occur earlier than for older anticancer therapies, yet uncertainty persists about what baseline actually means. Because the CAR-T process spans several weeks, including leukapheresis, bridging therapies, and hospitalisation, a patient’s disease status and quality of life can shift dramatically between initial stages and infusion. Several researchers argued that future analyses should include two baselines, one right before lymphodepletion and one at the time of apheresis. Health technology assessment representatives insisted that baseline should mean study baseline, tied to treatment decision or randomisation, not any later time point.

Follow-up timing proved equally contentious. Participants suggested assessments as early as one week after infusion could serve as a crucial anchor point to capture the frequency, intensity, severity, and resolution of side effects. Industry representatives acknowledged the feasibility challenges, noting that patients are often hospitalised and facing severe complications like CRS shortly after infusion. For BsAbs with step-up dosing, where patients receive three doses during week one, some argued quality of life and toxicity should be explored after each individual dose. A regulatory representative called for weekly assessments during the first two months after CAR-T administration, using an item library to select really important symptoms such as headache and fatigue, alongside physical functioning measured on a high-frequency basis.

Perhaps the most emotionally resonant finding concerns what current PROMs systematically miss. Patients described the intense mental strain of waiting for CAR-T, including fear that their health would deteriorate during the manufacturing interval and render them ineligible. One patient recounted that doctors and nurses focused on physical side effects while never asking about the mental part, which was the most difficult aspect, and that her doctor essentially told her the mental part was hers to handle alone. Participants also flagged emerging concepts like time toxicity, meaning the time patients spend managing treatment and its effects, along with the burden on family carers, financial strain, and the psychological weight of living with an immunocompromised state. None of the three commonly used PROMs in trials, the EORTC QLQ-C30, MDASI-CAR, and PRO-CTCAE, capture waiting anxiety, logistical burden, caregiver burden, or treatment-free survival.

The study’s recommendations form a concrete blueprint for reform. The authors propose a dual-baseline strategy appropriate for rapid clinical changes preceding CAR-T infusion, mandated early high-frequency assessments, meaning weekly for the first four weeks, systematic inclusion of patient-important domains currently under-captured such as emotional well-being and time toxicity, continued PRO data collection beyond clinical progression, and transparent, comprehensive reporting of PRO findings. They also endorse interim strategies like combining instruments, adding PRO-CTCAE items to primary measures, and incorporating qualitative interviews or free-text responses. Longer-term, they support developing new treatment-specific PROMs, potentially with a modular core-plus-supplement design, alongside computerised adaptive testing to tailor questionnaires to individuals and reduce respondent burden.

The stakes extend far beyond academic measurement. CAR-T and BsAbs are high-cost therapies whose cost-effectiveness for health systems remains controversial, and PROM data directly informs reimbursement decisions. Under-reporting PRO data, the authors argue, is not just a concern for research validity but an unethical waste of patients’ time and energy, breaking the implicit agreement that patients’ contributions will meaningfully inform knowledge generation. Patients were willing to complete PROMs when they understood how their data would be used and felt confident it would not be wasted. As these immunotherapies continue to expand across haematological malignancies, the gap between what patients endure and what trials record can no longer be ignored. Clearer guidance from regulators and payers on instrument selection, assessment schedules, and reporting would substantially improve the quality and patient-centredness of evidence in this rapidly evolving field.

Subject of Research: Optimisation of patient-reported outcome measures for haematological cancer patients receiving CAR-T and bispecific antibody immunotherapies

Article Title: Optimisation of patient-reported outcome measurement for haematological cancer patients receiving novel immunotherapies: perspectives of multi-stakeholders

Article References: Duncan, E. M., Salviano, J., Kyriakou, C., Nier, S., Oerlemans, S., Salek, S., Morgan, K., & Joyner, K. (2026). Optimisation of patient-reported outcome measurement for haematological cancer patients receiving novel immunotherapies: perspectives of multi-stakeholders. Frontiers in Hematology, 5, Article 1800304. https://doi.org/10.3389/frhem.2026.1800304

Image Credits: AI Generated

DOI: 10.3389/frhem.2026.1800304

Keywords: CAR-T therapy, bispecific antibodies, patient-reported outcomes, PROMs, haematological malignancies, cytokine release syndrome, ICANS, quality of life, clinical trials, time toxicity, regulatory guidance, survivorship

The review traces the intellectual history of the problem back to a decisive shift in the 1980s, when treatment evaluation moved away from physician-scored physical measures, such as joint range of motion or walking distance, toward the patient’s own perspective. That change brought enormous benefits, because objective findings on examination often fail to capture a patient’s total function. But it also swapped one kind of measurement error for another. Instead of physical measurement error, researchers now faced perception-based response bias, in which the very act of self-evaluation can shift the scale being used.

The theoretical foundation was laid in 1999, when Mirjam Sprangers and Carolyn Schwartz proposed a model defining three mechanisms of response shift. Recalibration describes a change in a patient’s internal standards, so that the same symptom is rated differently at different times. Reprioritization describes a change in the values attached to different life domains. Reconceptualization describes a redefinition of what quality of life means altogether. Five years later, Rapkin and Schwartz deepened the model by arguing that response shift is rooted in cognitive appraisal, the mental machinery behind every quality-of-life rating. They identified four appraisal parameters: the frame of reference a patient brings to the assessment, the salient experiences recalled and sampled when answering, the standards of comparison used as benchmarks, and the subjective algorithm that combines these appraisals into a single score.

This cognitive framework offers a striking explanation for one of medicine’s enduring puzzles, the disability paradox. Formally described by Gary Albrecht and Patrick Devlieger, building on the sociological work of Sol Levine, the paradox asks why so many people with serious and persistent disabilities report good or excellent quality of life when external observers judge their daily existence to be undesirable. The answer, according to the appraisal model, is that quality of life is not a direct readout of objective health status. It is the product of the four appraisal parameters, and patients who emphasize positive and controllable aspects of their illness tend to report better quality of life despite measurable impairment. Adaptive response shift lowers internal standards, reprioritizes values, and redefines the construct itself, all in ways that protect subjective well-being.

But the same machinery can run in reverse, and this is where the review delivers its most provocative material. Schwartz and colleagues studied 22 young adult survivors of childhood cancer who received a psychosocial intervention, compared with 54 age-matched healthy controls. Standard analysis produced an alarming result: the intervention appeared to produce an immediate gain in global quality of life followed by a significant decline, as if the program were making things worse. Once response shift was accounted for, the picture flipped entirely. The intervention had raised survivors’ internal standards for what counts as good quality of life, shifted the weight they placed on different domains, and normalized their understanding of quality of life so that it matched that of healthy peers. Survivors began evaluating themselves against a normal standard rather than a cancer-survivor standard, and their scores fell even as their psychological state objectively improved.

The authors call this the reverse disability paradox, and it has profound implications for clinical trials. A genuinely effective intervention can appear ineffective, or even harmful, because it dismantles the protective appraisal shifts that had been inflating baseline scores. The review labels this the Schwartz 1999 paradox, and warns that failure to account for response shift can produce either overestimation or underestimation of true treatment-related change. Null or negative trial results, in other words, may sometimes reflect a moving measuring stick rather than a failed therapy.

The evidence that this happens across oncology is now substantial. A systematic review by Goran Ilie and colleagues found that 34 of 35 included studies detected response shift effects in cancer quality-of-life assessments, with breast cancer patients the most studied population at 18 studies, followed by lung cancer at 14, and prostate and colorectal cancers at 8 each. A separate systematic review by Emma McCurdy-Franks and coauthors identified 16 studies using the then-test, a retrospective pre-test in which patients are asked to re-rate their earlier state from their current perspective, to detect response shift in cancer patients. The authors caution, however, that the then-test carries known limitations and should be used carefully, as newer detection methods gain acceptance.

Further support comes from a re-analysis by Mirjam Verdam and colleagues of multiple randomized trials of psychological interventions, including psychotherapy for cancer survivors and cognitive behavioral therapy for depressed diabetic patients. Response shift effects appeared in the intervention groups of every analyzed dataset. The reason is almost self-defeating: psychological interventions deliberately aim to change patients’ frames of reference, which is precisely the mechanism that produces response shift. Any trial of a therapy designed to alter how patients think should expect the measuring instrument itself to move.

The review closes by looking forward. Because patient-reported measures are inherently shaped by psychological state, social context, and expectations, the authors argue that predictive models of outcomes must expand beyond traditional clinical metrics to include psychosocial, socioeconomic, and mental health factors. They advocate building appraisal and response shift directly into future patient-reported outcome measures, creating personalized instruments that let patients define their own constructs. Artificial intelligence offers a promising frontier here. Work by Dan Garcia and colleagues showed that AI analysis of open-ended patient responses captured health changes that remained statistically significant even after accounting for changes detected by conventional rating scales, while other researchers describe how AI could transform static questionnaires into dynamic clinical instruments supporting continuous, multimodal symptom monitoring in oncology workflows.

The authors end on a characteristically bold note. No measurement instrument will ever fully replicate the richness of human cognitive appraisal, which is deeply contextual and extraordinarily complex. Yet society has crossed a technological threshold they describe as the moment when sand can think, a reference to the fact that modern microchips are made from silicon derived from silicon dioxide, ordinary sand. With machines now capable of computation that resembles aspects of cognition, the review argues, oncology is finally getting closer to hitting the mark in quality-of-life measurement. The verdict on response shift, the authors conclude, is settled: it is fact, not myth, and ignoring it risks misreading the very outcomes that cancer research exists to improve.

Subject of Research: Response shift and cognitive appraisal in cancer patient-reported quality-of-life measurement

Article Title: Response shift in oncology: fact or myth

Article References: McCarvell, V., Wagman, E., McCurdy-Franks, E., Wardill, H., Caini, S., Wong, H., Randhawa, A., Chow, E., & Finkelstein, J. (2026). Response shift in oncology: fact or myth. Supportive Care in Cancer, 34(10), Article 956. https://doi.org/10.1007/s00520-026-11212-w

Image Credits: AI Generated

DOI: 10.1007/s00520-026-11212-w

Keywords: response shift, quality of life, patient-reported outcome measures, oncology, cognitive appraisal, disability paradox, PROMs, psychometrics, clinical trials, artificial intelligence, cancer survivors, Supportive Care in Cancer

The demographic backdrop gives the argument its urgency. Europe is undergoing an unprecedented transition, with longer life expectancy and a growing prevalence of chronic conditions reshaping health systems from the ground up. People increasingly live for decades with illnesses such as diabetes, heart failure, chronic obstructive pulmonary disease, and dementia, moving repeatedly between primary care, specialist clinics, hospitals, rehabilitation facilities, home care, and long-term residential settings. Each of these services may deliver technically competent interventions, but the overall experience is often fragmented. Righi contends that repeated transitions, limited continuity, and insufficient attention to personal goals and values can gradually erode a patient’s sense of dignity—and that this erosion is currently invisible to the quality indicators systems routinely collect.

The intellectual foundations for measuring dignity are far stronger than most policymakers realise. The philosopher Lennart Nordenfelt distinguished between an intrinsic and universal dimension of dignity, inherent to every human being, and contingent dimensions that illness, dependency, stigma, or social vulnerability can threaten. Building on that framework, Harvey Max Chochinov and colleagues in Canada demonstrated through empirical research that dignity is not merely an abstract ethical principle but a clinically relevant phenomenon, closely associated with suffering, psychological well-being, and the overall experience of care. Their landmark studies in terminally ill patients showed that dignity-related distress could be identified, characterised, and addressed, giving the concept tangible implications for health outcomes and quality of life rather than leaving it in the realm of rhetoric.

What has changed most significantly in recent years is the recognition that dignity is not an end-of-life concern alone. Studies involving people living with chronic diseases have shown that dignity may be affected by loss of autonomy, functional decline, social isolation, uncertainty about the future, and shifts in personal identity that accompany long-term illness. For many individuals, dignity shapes how they interpret their illness, how they engage with healthcare professionals, and how they evaluate the care they receive. This finding challenges the traditional assumption that dignity matters mainly in hospices and palliative wards. Instead, it supports treating dignity as a central dimension of living with disease across the entire trajectory of chronic illness, from first diagnosis through years of monitoring, treatment, and adaptation.

The measurement gap is particularly striking given the sophistication of contemporary outcome assessment. Healthcare systems across Europe and beyond increasingly collect Patient-Reported Outcome Measures, known as PROMs, and Patient-Reported Experience Measures, known as PREMs, to evaluate clinical results, care experiences, and value generation. Yet the dimension that patients themselves most consistently identify as fundamental to their well-being is rarely assessed systematically. Within the framework of person-centred care and Value-Based Healthcare—the movement that seeks to tie spending to outcomes that genuinely matter to patients—Righi argues that this omission is becoming increasingly difficult to justify. A system can quantify symptom burden, readmission rates, and satisfaction scores while remaining blind to whether patients feel their sense of self, autonomy, and personal worth has been respected.

The tools to close this gap already exist. The Patient Dignity Inventory, developed by Chochinov’s team, has demonstrated that dignity can be assessed reliably and meaningfully, capturing dignity-related distress across multiple domains. Subsequent research has supported the instrument’s applicability beyond palliative care, including among individuals living with chronic illness, with studies confirming its factorial structure in non-end-of-life populations. Righi is careful to note that measuring dignity does not reduce this complex construct to a bare numerical score. Rather, systematic assessment provides a structured means of identifying unmet needs, evaluating interventions, and understanding whether healthcare systems are achieving one of their most fundamental objectives. In this sense, a dignity metric functions less like a laboratory value and more like a diagnostic lens on the relational and organisational quality of care.

Dignity may also prove to be a distinctly nursing-sensitive outcome. Nurses maintain some of the most continuous and sustained relationships with older adults and people living with chronic conditions, often across years of home visits, ward shifts, and care coordination. Through therapeutic communication, emotional support, promotion of autonomy, and relationship-based care, nursing practice can substantially influence how patients experience dignity in everyday encounters. Evaluations of structured interventions such as the Dignity Care Pathway for community nurses suggest that dignity-focused practice can be operationalised and assessed. Incorporating dignity into nursing outcomes research, Righi argues, would open new opportunities to evaluate interventions, organisational models, and care pathways aimed at improving person-centred care—turning a value that currently depends on individual professional commitment into a systematic organisational priority.

Recent scholarship has broadened the concept further, linking dignity to human rights, participation, social inclusion, relational care, and epistemic justice. These perspectives suggest that dignity is not simply about treating people politely; it involves recognising patients as persons whose values, preferences, identities, and goals remain central throughout the course of illness. This framing matters for ageing societies in particular. Dignity, the article stresses, is relevant not only in the context of frailty or care dependency but as a fundamental dimension of the ageing process itself, influencing how individuals experience autonomy, identity, participation, and social inclusion throughout later life. Recognising dignity in ageing means acknowledging older persons not merely as recipients of care but as individuals whose life projects remain meaningful across the entire life course.

The structural challenge, however, is that dignity preservation currently depends more on the goodwill of individual professionals than on systems designed to support it. Across Europe, substantial differences remain in how health and social care services are organised and integrated, and fragmentation between acute care, community services, and long-term care continues to be a major challenge in many countries despite a shared rhetorical commitment to person-centred care. When care pathways fracture, dignity erodes in the gaps between services—no single provider feels responsible, and no dashboard records the damage. Righi’s central question cuts to the heart of this paradox: if dignity is widely recognised as a fundamental goal of healthcare, why is it so rarely measured as an outcome? The answer, he suggests, lies less in technical difficulty than in the absence of accountability structures that would make dignity visible to managers, commissioners, and clinicians alike.

The next step, the article concludes, is to transform dignity from a universally endorsed principle into a measurable and actionable outcome. Within Value-Based Healthcare, dignity offers a rare opportunity to connect ethical values, patient experience, and quantifiable results in a single framework, bridging the gap between rhetorical commitments to person-centred care and meaningful accountability for what truly matters to patients. Adding dignity to outcome assessment would not merely create another indicator; it would make visible one of the most fundamental purposes of care itself—recognising individuals as persons whose values, identities, preferences, and goals remain central despite illness, dependency, and vulnerability. For ageing European societies, and for health systems everywhere confronting the chronic disease era, the argument lands with force: only by integrating dignity into routine measurement can healthcare move closer to care that combines clinical effectiveness, sustainability, and genuine respect for the human dimension of growing old and living ill.

Subject of Research: Measuring dignity as a patient-reported outcome in chronic illness, ageing, and long-term care

Article Title: The missing metric: Why dignity must be measured in chronic illness and long-term care

Article References: Righi, L. (2026). The missing metric: Why dignity must be measured in chronic illness and long-term care. PLOS Aging and Health, 1(1), e0000022. https://doi.org/10.1371/journal.page.0000022

Image Credits: AI Generated

DOI: 10.1371/journal.page.0000022

Keywords: dignity, patient-reported outcomes, chronic illness, long-term care, ageing, person-centred care, nursing outcomes, Patient Dignity Inventory, Value-Based Healthcare, PROMs, healthcare quality, palliative care

The scale of the problem emerges clearly from the numbers. Half of the surveyed patients, 2,359 individuals, reported a previous COVID-19 infection diagnosis. Among those, more than one in four, 605 people, said they were still experiencing Long COVID-related symptoms lasting two months or longer after their infection. That translates into a Long COVID prevalence of 12.9 percent among primary care users aged 45 years and older in Belgium, a striking figure for a condition that was barely recognized in clinical guidelines only a few years ago. Because the study population consists of people already in contact with general practices, the authors caution that the estimate speaks specifically to the burden carried within primary care, but that burden is clearly substantial.

The methodological backbone of the study is the PaRIS initiative, which the OECD developed to allow countries to compare how well their health systems serve people living with chronic conditions. Rather than relying solely on clinical measurements or administrative records, PaRIS collects patient-reported outcome measures, or PROMs, which capture how patients rate their general health, wellbeing, and physical and mental health, alongside patient-reported experience measures, or PREMs, which assess dimensions such as trust in the healthcare system and whether care feels person-centred. Belgium contributed to the international survey by recruiting patients through general practices, giving researchers a rare window into the day-to-day reality of chronic illness as patients themselves perceive it.

To identify who develops Long COVID and what it costs them, the research team applied two complementary statistical approaches. Multivariate models were used to examine the clinical and sociodemographic determinants of the condition, adjusting for a range of factors that could confound the association. Mixed-effects models were then applied to compute ten key PROM and PREM indicators following the PaRIS10 methodology, a standardized framework designed to make results comparable across countries. Crucially, these models accounted for the hierarchical structure of the data, with patients nested within general practitioner practices, ensuring that differences between practices did not distort the estimates of individual-level effects.

The determinants of Long COVID that emerged from the analysis paint a consistent picture. Female sex, age between 45 and 54 years, lower educational level, multiple chronic conditions, and higher body mass index were all associated with having Long COVID. The finding that women and middle-aged adults carry a disproportionate share of the condition echoes patterns reported in many other studies, while the role of educational level points to possible socioeconomic gradients in either infection exposure, access to care, or the likelihood of persistent symptoms being recognized and recorded. The association with multimorbidity and elevated BMI suggests that patients already managing chronic health problems face an elevated risk of their infection leaving a lasting imprint.

When the researchers compared patient-reported outcomes, the differences between the two groups were stark. Primary care patients aged 45 and older with Long COVID reported significantly lower PROM scores for general health, wellbeing, and both physical and mental health compared with respondents who had not developed the condition. In other words, even after accounting for the fact that these are all patients with chronic conditions attending general practices, those with Long COVID consistently rated their lives as worse across every domain measured. The multisystemic nature of the condition, which can affect the cardiovascular, respiratory, neurological, and other body systems, is reflected in this broad deterioration rather than in any single narrow deficit.

Duration mattered as well. Patients whose Long COVID symptoms had persisted for at least one year reported even poorer outcomes than those with shorter symptom duration, with the sharpest declines seen in general health, wellbeing, and physical health. This gradient suggests that for a substantial group of patients, Long COVID is not a transitional phase that resolves within months but a chronic state that erodes functioning over time. From a health services perspective, it implies that the demand these patients place on primary care is not a temporary surge that will dissipate as the pandemic recedes, but a durable feature of the patient population that care systems will need to plan for.

The experience measures told a more nuanced story. Overall, PREMs showed no significant differences between Long COVID and non-Long COVID respondents, indicating that patients with the condition did not broadly rate their care interactions worse than others. However, the picture changed for those still experiencing long-term symptoms at the time of the survey: trust in the healthcare system and perceptions of person-centred care were significantly lower among these patients. This distinction matters because it suggests that the frustration of people with active, ongoing symptoms is not diffuse dissatisfaction but a specific signal that the system is not yet meeting their needs, whether through fragmented pathways, unclear communication, or limited access to dedicated Long COVID services.

The authors conclude that adults with Long COVID in Belgian primary care report poorer health outcomes and less positive care experiences than those without the condition, and they argue that the findings point to the need for more tailored, person-centred care. Strengthening dedicated care pathways, improving coordination across services, and ensuring clear communication and support for patients are identified as essential steps for better addressing the needs of people living with the condition. The study was funded by the Belgian National Institute for Health and Disability Insurance, and the corresponding author is Sarah Moreels of Sciensano in Brussels.

Beyond Belgium, the study demonstrates the value of patient-reported indicators as a surveillance tool for post-acute infection conditions. Because PROMs and PREMs are collected through standardized questionnaires rather than laboratory tests, they can capture the functional and experiential toll of a condition that often lacks objective diagnostic markers, and the PaRIS10 framework allows that toll to be benchmarked internationally. As health systems across high-income countries confront the same growing population of patients with persistent post-COVID symptoms, the Belgian experience suggests that listening systematically to patients, and acting on what they report about both their health and their care, will be central to building services that this group can actually trust.

Subject of Research: Patient-reported outcomes and care experiences of adults with Long COVID in Belgian primary care

Article Title: Investigating care outcomes and experiences of adults with Long COVID through patient-reported indicators (PROMs and PREMs) in Belgium

Article References: Moreels, S., Ekelson, R., Smith, P., Speybroeck, N., Bensemmane, S., De Schreye, R., & Annaert, D. (2026). Investigating care outcomes and experiences of adults with Long COVID through patient-reported indicators (PROMs and PREMs) in Belgium. BMC Health Services Research. https://doi.org/10.1186/s12913-026-15783-6

Image Credits: AI Generated

DOI: 10.1186/s12913-026-15783-6

Keywords: Long COVID, patient-reported outcome measures, PROMs, PREMs, primary care, Belgium, PaRIS, health services research, chronic conditions, person-centred care, OECD, multimorbidity

The problem the editorial describes is one that has shaped surgical research for decades. Historically, outcomes in plastic and reconstructive surgery were evaluated through surgeon-reported assessments, non-standardized rating scales, or questionnaires designed in-house by individual institutions. A surgeon might declare a result excellent based on visual inspection and personal judgment, while the patient, whose expectations and daily experience were never formally recorded, might feel very differently. Because every center used its own criteria, results from different hospitals and countries could not be meaningfully compared. Systematic reviews and meta-analyses, the backbone of evidence-based medicine, were crippled by this heterogeneity. The editorial notes that this fragmentation limited both reproducibility and comparability, two qualities that modern science considers non-negotiable.

The turning point came with the recognition that the patient’s voice is not a soft, anecdotal supplement to hard clinical data but a rigorous measurement domain in its own right. This insight gave rise to a family of instruments developed with psychometric discipline rather than ad hoc questionnaire writing. The most celebrated examples are the BREAST-Q, the FACE-Q, the BODY-Q, and the CLEFT-Q, each targeting a specific anatomical region or patient population. These tools marked what the editorial calls a pivotal shift toward standardized outcome measurement, and their development methodology is worth understanding because it explains why they work where older scales failed.

The Q-family instruments were built using rigorous mixed-methods approaches grounded in Rasch Measurement Theory, a mathematical framework from psychometrics, the science of measuring latent traits such as satisfaction, well-being, or perceived function. Rasch analysis converts ordinal questionnaire responses, such as ratings on a Likert scale, into interval-level measurements, allowing researchers to say not just that one patient scored higher than another but by how much, on a scale with equal intervals. The development process typically begins with qualitative interviews with patients to identify which aspects of their condition and treatment actually matter to them, ensuring content validity, meaning the instrument measures what patients consider important rather than what clinicians assume matters. Statistical validation then confirms that the items behave consistently across diverse populations, that the scale measures a single coherent construct, and that scores remain stable when the underlying condition has not changed yet respond sensitively when it has.

The practical payoff of this rigor is enormous. Validated PROMs quantify domains that cannot be reliably defined by subjective assessment alone: appearance-related feedback, physical symptoms and how patients perceive them, psychosocial impact, and overall quality of life. In breast surgery, for example, the BREAST-Q captures satisfaction with breasts, psychosocial well-being, physical well-being of the chest and torso, and sexual well-being, producing profiles that reveal trade-offs invisible to a clinical photograph. In facial aesthetic and reconstructive practice, the FACE-Q measures how patients feel about their appearance and the social consequences they experience. The BODY-Q serves patients undergoing weight loss and body contouring, while the CLEFT-Q gives children and young people with cleft lip and palate a validated way to report on their own appearance, speech, and psychosocial functioning. Region-specific instruments like these are commonly used alongside generic tools that evaluate overall patient condition and treatment effectiveness, giving researchers both a wide-angle and a close-up view of outcomes.

The editorial also highlights instruments designed for specific disease states, including the LYMQOL quality-of-life measure for limb lymphedema and the ULL-27 questionnaire for upper limb lymphedema, both cited in the article’s reference list. Lymphedema, a chronic swelling condition that frequently follows cancer surgery involving lymph node removal, illustrates why standardized measurement matters so much. Limb circumference measurements tell clinicians about volume, but they say nothing about the heaviness, tightness, pain, and functional limitation that define the patient’s daily reality. Questionnaires such as the ULL-27 translate that lived experience into numbers that can be tracked over time, compared across treatments, and pooled across studies, which is precisely what the field needs as lymphedema research expands.

Standardization also attacks one of the most insidious problems in surgical literature: outcome reporting bias. When researchers choose which outcomes to report, and how, after seeing their results, the published record becomes selectively flattering. Pre-specified, validated instruments make it much harder to cherry-pick, because the domains of interest are defined in advance and measured with tools whose properties are known. The editorial states that the routine use of validated outcome measures directly aligns with the journal’s principles by reducing outcome reporting bias, improving reproducibility, and facilitating secondary analyses. In an era when the volume of plastic surgery research output continues to grow, this infrastructure is what allows individual studies to aggregate into genuine knowledge rather than a pile of incomparable anecdotes.

There is, however, a practical wrinkle that the editorial is careful to flag: licensing. Many of the best-known instruments are copyrighted, and using them, even in academic publications, requires obtaining a license. The good news, according to the editorial, is that most instruments available for outcome measurement offer a free license for use and publication, but a license must still be formally acquired. This step is easy to overlook in the rush to launch a study, and overlooking it can create legal complications that delay publication. For research teams, the message is to plan instrument licensing at the protocol stage, alongside ethics approval and sample size calculations, rather than treating it as an afterthought.

For patients, the broader significance of this shift is that their subjective experience is finally being treated as primary evidence. A reconstruction that looks flawless to the surgical team but leaves the patient in chronic pain, or a contouring procedure with technically excellent measurements but devastating psychological side effects, will now register in the data. Conversely, interventions that produce modest anatomical change but transform quality of life can finally demonstrate their true value, which matters enormously for reimbursement decisions, health technology assessments, and priority-setting in public health systems. Patient-centered measurement changes not only how studies are scored but which questions get asked and funded in the first place.

The editorial closes on a forward-looking note: as plastic and reconstructive surgery research continues to expand in volume, standardized outcome measurement will remain central to generating reproducible, transparent, and accessible publications. In a field where success is measured in confidence restored, function regained, and identities rebuilt, the instruments described in this overview are more than statistical conveniences. They are the mechanism by which the most human dimensions of surgical care earn a rigorous, comparable, and permanent place in the scientific record, ensuring that the next generation of surgical evidence speaks both the language of the operating room and the language of the people it serves.

Subject of Research: Standardized patient-reported outcome measures and assessment tools in plastic and reconstructive surgery research

Article Title: Standardized outcome assessment tools in plastic and reconstructive surgery: an overview

Article References: Sinelnikov, M. Y. (2025). Standardized outcome assessment tools in plastic and reconstructive surgery: an overview. BMC Plastic and Reconstructive Surgery, 1(1), Article 12. https://doi.org/10.1186/s44452-025-00012-6

Image Credits: AI Generated

DOI: 10.1186/s44452-025-00012-6

Keywords: plastic surgery, reconstructive surgery, patient-reported outcome measures, PROMs, BREAST-Q, FACE-Q, BODY-Q, CLEFT-Q, psychometrics, Rasch Measurement Theory, outcome reporting bias, lymphedema