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Background and Aims: End-stage liver disease (ESLD) is an important cause of morbidity and mortality, comparable to a large extent to other organ insufficiencies. The need for palliative care (PC) in patients with ESLD is high. In Portugal, in the only identified study, more than 80% of patients hospitalized with ESLD had criteria for PC. No results specified which needs they identified or their transplantation prospect status. Methods: Prospective observational study including 54 ESLD patients who presented to a university hospital and transplantation center, between November 2019 and September 2020. Assessment of their PC needs through the application of NECPAL CCOMS-ICO© and IPOS, considering their transplantation perspective status. Results: Of the 54 patients, 5 (9.3%) were on active waiting list for transplantation and 8 (14.8%) under evaluation. NECPAL CCOMS-ICO© identified 23 patients (n = 42.6%) that would benefit from PC. Assessment of PC needs by clinicians, functional markers and significant comorbidities were the most frequent criteria (47.8%, n = 11). IPOS also revealed a different sort of needs: on average, each patient identified about 9 needs (8.9 ±2.8). Among the symptoms identified, weakness (77.8%), reduced mobility (70.3%), and pain (48.1%) stood out, as well as the psychoemotional symptoms of depression (66.7%) and anxiety (77.8%). There were no significant differences between the subgroups of patients analyzed. Only 4 patients (7.4%) were followed by the PC team. Conclusion: All the ESLD patients included, independently of the group they belonged to, presented with PC needs. No significant differences between the subgroups of patients were identified, confirming that even patients with a transplantation prospect have important needs for PC.

Introduction: End-stage liver disease (ESLD) is the advanced phase of most liver diseases. The cure is liver transplantation (LT), only available for a minority of patients. This review summarizes the evidence regarding palliative care (PC) in ESLD patients awaiting LT. Methods: Review of the literature available in Medline, Scopus and Web of Knowledge, with keywords ESLD and PC. Results: Fifteen of the 230 articles reviewed met the inclusion criteria. Ten main themes were addressed: symptom burden; perspectives of life-sustaining treatment and comfort for patients, families and health professionals; goals of care discussions; patient and family needs; quality of life; PC and survival; referral to PC, barriers and opportunities; integration of PC; outpatient care and cost-effectiveness analysis. The referral of patients to PC was only evaluated in a few studies, all of which reported low referral rates. Better knowledge of how PC professionals can support other professionals was considered important, and also better ways to integrate PC were considered essential. Conclusion: ESLD patients awaiting LT have a significant need for PC and, despite the insufficient response, were reported to benefit from this type of care. Future research is essential to determine the means to overcome barriers and better integrate PC for ESLD patients awaiting LT. Introdução: A doença hepática avançada (DHA) corresponde à fase mais avançada das doenças hepáticas. O transplante hepático (TH) é o tratamento curativo, disponível apenas para uma minoria de doentes. Esta revisão sumariza a evidência sobre cuidados paliativos (CP) em doentes com DHA que aguardam TH. Métodos: Revisão da literatura existente na Medline, Scopus e Web of Knowledge. Palavras chave pesquisadas CP e DHA. Resultados: Quinze dos 230 artigos encontrados cumpriram critérios de inclusão. Dez temáticas foram abordadas: carga sintomática; discussão de objectivos de cuidados; perspectivas sobre tratamentos de suporte artificial e conforto; necessidades do doente e família; qualidade de vida; CP e impacto no prognóstico; referenciação para CP, barreiras e oportunidades; integração dos CP; cuidados de ambulatório e análises de custo-benefício. Poucos estudos avaliaram a referenciação para CP, todos com baixas taxas. Mais conhecimento e formação dos profissionais que acompanham doentes com DHA parece ser necessário, bem como, melhor articulação entre os diferentes intervenientes. Conclusão: Doentes com DHA que aguardam TH apresentam importantes necessidades de CP. Apesar da insuficiente resposta a este nível, parecem beneficiar deste tipo de cuidados. Estudos futuros que clarifiquem como ultrapassar as barreiras e a melhor integração dos CP nos doentes que aguardam TH são essenciais. info:eu-repo/semantics/publishedVersion