The economic burden of chronic liver disease is rising; however, the financial impact of chronic liver disease on patients and families has been underexplored. We performed a scoping review to identify studies examining financial burden (patient/family health care expenditures), financial distress (material, behavioral, and psychological consequences of financial burden), and financial toxicity (adverse health outcomes of financial distress) experienced by patients with chronic liver disease and their families. We searched MEDLINE, Embase, Cochrane Library, and the Web of Science online databases for articles published since the introduction of the Model for End-Stage Liver Disease score for liver transplantation allocation in February 2002 until July 2021. Final searches were conducted between June and July 2021. Studies were included if they examined the prevalence or impact of financial burden or distress among patients with chronic liver disease and/or their caregivers. A total of 19 observational studies met inclusion criteria involving 24,549 patients and 276 caregivers across 5 countries. High rates of financial burden and distress were reported within the study populations, particularly among patients with hepatic encephalopathy, hepatocellular carcinoma, and liver transplantation recipients. Financial burden and distress were associated with increased pre- and posttransplantation health care utilization and poor health-related quality of life as well as caregiver burden, depression, and anxiety. None of the included studies evaluated interventions to alleviate financial burden and distress. Observational evidence supports the finding that financial burden and distress are underrecognized but highly prevalent among patients with chronic liver disease and their caregivers and are associated with poor health outcomes. There is a critical need for interventions to mitigate financial burden and distress and reduce financial toxicity in chronic liver disease care.

Erythropoietic protoporphyria and X-linked protoporphyria are rare genetic photodermatoses. Limited expertise with these disorders among physicians leads to diagnostic delays. Here, we present evidence-based consensus guidelines for the diagnosis, monitoring, and management of erythropoietic protoporphyria and X-linked protoporphyria. A systematic literature review was conducted, and reviewed among subcommittees of experts, divided by topic. Consensus on guidelines was reached within each subcommittee and then among all members of the committee. The appropriate biochemical and genetic testing to establish the diagnosis is reviewed in addition to the interpretation of results. Prevention of symptoms, management of acute phototoxicity, and pharmacologic and nonpharmacologic treatment options are discussed. The importance of ongoing monitoring for liver disease, iron deficiency, and vitamin D deficiency is discussed with management guidance. Finally, management of pregnancy and surgery and the safety of other therapies are summarized. We emphasize that these are multisystemic disorders that require longitudinal monitoring. These guidelines provide a structure for evidence-based diagnosis and management for practicing physicians. Early diagnosis and management of these disorders are essential, particularly given the availability of new and emerging therapies.