Measuring Perceived Goal Concordant Care Among Patients With Advanced Liver Diseases and Their Caregivers

High-quality care in advanced chronic liver disease requires alignment between patients' goals and preferences and the care delivered. However, no validated instruments exist to measure perceived goal-concordant care (GCC), defined as patients' and caregivers' assessment of the extent to which received care aligns with their preferences.

We developed a novel dyadic instrument with input from clinicians, researchers, patients with advanced chronic liver disease, and their caregivers. The measure includes 2 domains: (i) goals-of-care conversations (GoCC), a 7-item scale assessing the patients' and caregivers' perception of the extent to which clinicians engaged them in discussion of prognosis, and (ii) care concordant with preferences (CCPs), a 4-item scale measuring the perceived alignment of care with preferences. Patients and caregivers were enrolled as dyads in the Palliative Care for Liver Diseases (PAL-LIVER) trial. Baseline data were used for psychometric evaluation. Factor structure was examined using confirmatory factor analysis and reliability using the Cronbach coefficient. Construct validity was tested by associations with patient satisfaction, quality of life, and caregiver burden.

Eight hundred thirty patients and 490 caregivers completed the GCC instrument. Confirmatory factor analysis demonstrated acceptable fit for GoCC (patient: comparative fit index [CFI] = 0.95, Tucker-Lewis index [TLI] = 0.92, root mean square error of approximation [RMSEA] = 0.12; caregiver: CFI = 0.99, TLI = 0.98, RMSEA = 0.07) and CCP after item refinement (patient: CFI = 0.99, TLI = 0.98, RMSEA = 0.06; caregiver: CFI = 0.97, TLI = 0.91, RMSEA = 0.18). Internal consistency was good (GoCC α = 0.79-0.84; CCP α = 0.82-0.85). CCP scores demonstrated moderate positive correlations with patient satisfaction (r = 0.49; caregiver r = 0.35) and quality of life (r = 0.31; r = 0.25), and small inverse correlations with caregiver burden (r = -0.17; r = -0.22).

This novel instrument provides initial evidence supporting validity and reliability for measuring perceived GCC in chronic liver disease patients and their caregivers.