Symptoms and unmet needs in advanced liver disease: interim analysis of an integrated palliative care outcome scale (IPOS) dataset

Introduction Patients with advanced liver disease are often referred late to palliative care services or experience healthcare that does not meet their end of life needs. The IPOS is a robust, widely-used patient reported outcome measure that has been validated in advanced disease. It captures the main symptoms and concerns of the patient from a bio-psycho-social-spiritual perspective and is brief enough to be used clinically at end of life. The IPOS utilises Likert scales and free-text questions, allowing patients to report symptoms and their impact over a set time period. We collated national IPOS data to establish the physical, psychological, emotional and practical symptoms, needs or concerns that matter most to patients with advanced liver disease to support both hepatology and palliative care services, working to reduce these health inequalities.

Methods Hepatology and palliative care services across England shared fully anonymised, routinely collected IPOS data from adult patients with advanced liver disease. Advanced liver disease (irrespective of the underlying aetiology) included those with compensated or decompensated cirrhosis unsuitable for curative treatment, and/or felt to be within their last year of life. Secondary analysis using descriptive statistics of the IPOS’ closed questions identified the main symptoms and their level of impact.

Results Results (n=323) demonstrate a median age of 71 years (range 34 to 95) and median deprivation decile of 4 (range 1–10). Of reported ICD-10 codes (n=227), 8% (n=19) were liver disease related to alcohol, 30% (n=68) were due to malignant diseae and 57% (n=130) were liver disease with an unspecified aetiology.

Within the IPOS physical subscale, 68.7% (n=222) were moderately, severely or overwhelmingly affected by weakness or lack of energy, with 40.6% (n=131) severely or overwhelmingly affected. Problems with mobility were the next most frequently reported symptom affecting 35.3% (n=114) at a severe to overwhelming level. Among the psychological concerns, family anxiety was reported ‘most of the time’ to ‘always’ for 44.3% (n=143). Being able to share feeling as wished with family or friends was reported by 13.9% (n=45) as only occasionally, or not at all, making this the most unmet need in the IPOS communication/practical issues subscale.

Conclusions Although final conclusions can only be drawn after full statistical analysis of the entire dataset, interim analysis suggests there are gaps in symptom management that should be explored further. These include rehabilitation as well as patient/family support needs. Knowledge of the symptoms and concerns which affect patients most will support ongoing work improving access and quality of supportive and palliative care for those with advanced liver disease.