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 medical context behind the study is sobering. Survival and life expectancy after complex treatment for rare diseases during pregnancy, infancy or childhood continue to climb, but cure of the initial disease is not the end of the story. Many children remain vulnerable to acute and long-term consequences that extend well beyond medical outcomes, encompassing psychological, neurocognitive, relational and societal effects that can persist throughout life. Previous research has shown that children treated for rare conditions face similar long-term challenges, including neurocognitive difficulties, attention and stimulus processing problems, and the need for extra support at school. Despite this shared risk profile, effective prevention, early detection and management of these outcomes often remain fragmented across care pathways, the study’s authors note.

To capture what families value, the team adapted a validated general childcare patient-reported experience measure, or PREM, refining it with input from adult and pediatric specialists, psychologists, nurse experts and family representatives who pilot-tested the questionnaire for usability, clarity and completeness. The final instrument included 21 Likert-scale questions rated from one, meaning total disagreement, to five, meaning total agreement, alongside five open-ended questions. Families who had at least one follow-up appointment within one of the three care pathways were eligible, and recruitment ran between April 2024 and June 2025 through a communal patient conference day, a digital newsletter and waiting-room announcements. Of 129 registered participants, 78 completed the questionnaire and 70 responses were suitable for analysis. Families with children aged 12 or older received separate questionnaires for the child and the caregiver, reflecting evidence that children and parents often report their experiences differently.

The quantitative results painted a broadly positive picture. Across all three pathways, response distributions skewed strongly toward favorable ratings. Feeling comfortable with healthcare professionals earned the highest possible top-box score—100 percent—in the neonatal intensive care group and 94.5 percent in the transplantation group. Having enough time with clinicians and being free to discuss concerns and wishes openly also ranked among the most positively experienced aspects of care in multiple pathways. For the cardiology group, comfort with clinicians and openness in discussion both reached 94.4 percent. These findings suggest that the human foundation of care—the trust, empathy and time that clinicians invest—is working well in these specialized centers.

The weaknesses, however, were more revealing precisely because they differed between pathways. In the neonatal group, the most negative ratings concerned designated care providers, with more than half of respondents lacking a single named point of contact, although most said they did not want one, apparently because they felt adequately served by existing contacts. In the cardiology group, the sharpest criticism targeted attention to children’s mental health, which drew a 33.3 percent negative rating, followed by information on long-term effects and attention to complete living situations such as family, school and home functioning, each at 27.8 percent. In the transplantation group, the highest negative scores concerned the wish for a designated provider and support for the transition to adult care, though the young median age of that cohort made the transition question largely theoretical.

The qualitative analysis of 286 free-text responses, conducted using the six-stage thematic approach of Braun and Clarke, uncovered six themes: information provision, care communication and coordination, humanistic care, comprehensive care, additional care and logistics. The information theme proved especially consequential. Families frequently reported missing information about long-term consequences, and one mother of a six-year-old explained that while doctors and nurses had covered the major possible consequences, subtler problems such as disrupted sensory processing and its warning signs were never mentioned—knowledge she believed would have been crucial. The lesson, the researchers suggest, is that families need both in-person explanations during visits and written materials, and that rare or less obvious long-term effects deserve explicit mention.

Communication across organizational boundaries emerged as another persistent sore point. Families appreciated transparent information sharing that they could themselves view, and most found it easy to reach specialists within the academic hospital. But beyond the hospital, the picture darkened. One mother described how reaching clinicians inside the center was straightforward while accessing care outside required negotiating the general practitioner and being left to her own devices. Others reported that primary and secondary care clinicians often lacked knowledge about complex treatments and their consequences because no unified information transfer system exists and expertise outside the specialized center is limited. A 28-year-old transplant recipient put it bluntly: the general practitioner is often unaware of what happens at the hospital, forcing the patient to retell their story repeatedly. This knowledge gap at the periphery of the system, the authors argue, is a structural barrier to appropriate care for children whose medical histories are inherently difficult to interpret.

The humanistic theme, by contrast, generated some of the most moving testimony in the study. Respondents described feeling taken seriously and understood when clinicians actively listened and worked with caregivers as equal partners. Kindness, empathy and compassion were cited as prerequisites for building the mutual trust on which family-centered care and shared decision-making depend. One mother of five-year-old twins recalled the empathy and clarity with which her sons’ diagnosis was communicated, describing how being genuinely heard during a situation in which parents had lost all control helped the family process the experience. Yet the analysis was not uniformly rosy: one mother of a four-year-old felt that more attention was given to her child as a medical object rather than as a person, a reminder that relationship building must be actively maintained rather than assumed.

Perhaps the most actionable insight concerns what the researchers call comprehensive and additional care. Families stressed the need for attention to the psychosocial impact of complex treatment not only on the child but also on parents, siblings and wider surroundings such as school, with one family suggesting preventive measures such as trauma processing resources after treatment. Others described feeling let go of or lost after the inpatient period, spending considerable time navigating the healthcare network alone to find appropriate support. This is not merely a matter of convenience: the study notes that poorer psychological well-being among children and parents is associated with greater care consumption and developmental delays, meaning that unmet psychosocial needs impose real costs on families and health systems alike. From a life-course perspective, the authors argue that unmet neurocognitive and psychosocial needs at early developmental stages can compound over time and shape future health trajectories, so follow-up services must anticipate evolving needs rather than relying on reactive referrals from isolated encounters.

The study is, according to its authors, the first to compare patient and family experiences across multiple care pathways for complex treatments, deliberately crossing the boundaries of siloed, organ-specific disciplines. The researchers acknowledge limitations, including possible recruitment and selection bias favoring families already engaged with the hospital, and the exclusion of families who do not speak Dutch, which may have tilted findings toward more positive experiences. Even so, the conclusions carry clear weight: institutions should prioritize a humanistic approach and relationship building, systematically address long-term psychosocial consequences, and strengthen information provision and comprehensive care networks so that families no longer feel lost. The pediatric oncology field demonstrates that structured integrated long-term follow-up is feasible at scale, offering a template other pathways could emulate. Ultimately, the researchers argue, advancing integrated physical, socioemotional and neurocognitive care contributes not only to event-free survival but to quality of life and true participation in society—the ultimate goal of optimal care.

Subject of Research: Patient- and family-reported experiences with integrated follow-up care pathways after complex childhood treatment for rare diseases

Article Title: Integrating optimal patient-centered care: patient- and family-reported experiences after complex treatment for rare diseases

Article References: Tijssens, F. L., Kies, P., de Ridder, L., de Pagter, A. P. J., van Klink, J. M. M., & the Life-Course Care, Follow-up Research Network (LEEF) (2026). Integrating optimal patient-centered care: patient- and family-reported experiences after complex treatment for rare diseases. World Journal of Pediatrics. https://doi.org/10.1007/s12519-026-01089-4

Image Credits: AI Generated

DOI: 10.1007/s12519-026-01089-4

Keywords: rare diseases, patient-reported experience measures, pediatrics, patient-centered care, value-based healthcare, integrated care pathways, follow-up care, psychosocial support, neonatal intensive care, stem cell transplantation, congenital heart disease, care coordination