New dyadic tool captures goal-concordant care in advanced liver disease
Advanced chronic liver disease often forces decisions before patients and families feel ready to make them. Transplant discussions, symptom control, prognostic uncertainty, and palliative planning can unfold in parallel, and the quality of those conversations shapes whether care feels aligned with patient priorities. This study addresses a gap that has long complicated both research and bedside practice: no validated instrument existed to measure perceived goal-concordant care from the perspective of patients and caregivers living with advanced liver disease.
Investigators developed a novel dyadic measure with input from clinicians, researchers, patients with advanced chronic liver disease, and caregivers. The design is straightforward in concept but clinically demanding in execution. It separates the experience of communication from the experience of actual care alignment, which matters in liver disease because a patient may receive technically appropriate treatment while still feeling unheard, unsupported, or pulled toward interventions that do not match personal goals.
Two domains, one clinical question
The instrument includes two domains. The first, goals-of-care conversations (GoCC), uses seven items to assess how patients and caregivers perceived clinician engagement around prognosis and decision-making. The second, care concordant with preferences (CCP), uses four items to measure whether the care delivered matched stated preferences. In advanced liver disease, that distinction is not cosmetic. Communication can be compassionate and still fail to translate into treatment plans that reflect the patient’s wishes, especially when encephalopathy, decompensation, fluctuating capacity, and caregiver stress complicate repeated discussions.
Patients and caregivers were enrolled as dyads in the Palliative Care for Liver Diseases (PAL-LIVER) trial, and baseline data were used for psychometric testing. The study design allowed the measure to be evaluated in the setting where it matters most: real patients with advanced chronic liver disease and the caregivers who often carry the day-to-day burden of navigating care.
The resulting dataset was substantial. Eight hundred thirty patients and 490 caregivers completed the instrument.
Factor structure and internal consistency held up across the cohort
Confirmatory factor analysis supported the structure of both domains, with acceptable fit across patient and caregiver versions after item refinement. For GoCC, patient responses showed a comparative fit index of 0.95, Tucker-Lewis index of 0.92, and root mean square error of approximation of 0.12. Caregiver responses were stronger, with a CFI of 0.99, TLI of 0.98, and RMSEA of 0.07. For CCP after refinement, patient fit was also strong, with a CFI of 0.99, TLI of 0.98, and RMSEA of 0.06. Caregiver CCP fit was more mixed, with a CFI of 0.97, TLI of 0.91, and RMSEA of 0.18.
Those numbers matter because they show the instrument is not simply a face-valid questionnaire; it behaves like a coherent psychometric tool. The pattern also suggests that caregiver perception of care concordance may be harder to capture cleanly than patient perception, likely because caregivers experience the same illness trajectory through a different emotional and logistical lens. In advanced liver disease, caregivers often witness hospitalizations, medication changes, symptom escalation, and prognostic conversations from the outside while also making practical decisions at home. Their interpretation of concordance may therefore be more heterogeneous.
Internal consistency was good across both domains. Cronbach coefficients ranged from 0.79 to 0.84 for GoCC and from 0.82 to 0.85 for CCP. In clinical measurement, that level of reliability is encouraging because it suggests the items within each domain are capturing a shared construct rather than unrelated impressions.
Concordance tracked with satisfaction, quality of life, and caregiver burden
Construct validity came from the expected direction of association. CCP scores correlated moderately and positively with patient satisfaction and quality of life, and showed small inverse correlations with caregiver burden. In patients, the correlation with satisfaction was 0.49 and with quality of life 0.31. In caregivers, the corresponding values were 0.35 and 0.25. Caregiver burden moved in the opposite direction, with inverse correlations of -0.17 and -0.22.
That pattern is clinically intuitive. When care aligns with preferences, patients are more likely to feel respected and less likely to experience treatment as discordant or invasive. The same alignment can ease the strain on caregivers, who often become the practical arbiters of appointments, medications, admissions, and end-of-life planning. In advanced liver disease, where symptoms can intensify quickly and the care trajectory may shift abruptly, a reliable measure of concordance can help identify communication failures before they harden into conflict.
Why a dyadic measure matters in liver disease care
The dyadic structure is one of the most useful features of this instrument. Patients and caregivers do not always view the same encounter the same way, and in advanced liver disease those differences can become clinically consequential. A patient may believe a discussion covered prognosis sufficiently, while a caregiver may leave uncertain about next steps. Conversely, a caregiver may feel the plan honors the patient’s wishes even when the patient remains ambivalent or feels pressured. A single-person measure would miss that split.
This tool gives investigators a way to study whether palliative interventions, serious-illness conversations, transplant evaluation pathways, or symptom-management programs actually improve perceived alignment of care. It also gives clinicians a potential framework for measuring something bedside teams already try to achieve but often cannot quantify: whether the care plan feels true to the patient’s goals once illness severity, family input, and prognosis are all in play.
The study does not claim to settle every measurement problem. The caregiver CCP fit was less robust than the patient version, and further validation in other liver disease settings will be important. Still, the instrument now has initial evidence of reliability and validity in a large cohort, which is a meaningful step for a field that has lacked a standardized way to measure perceived goal-concordant care.
For advanced chronic liver disease, where treatment intensity and personal values can diverge quickly, the ability to measure that divergence is not abstract. It is the difference between assuming alignment and documenting it.