Editorial: Addressing Unmet Needs and Socioeconomic Disparity in Patients With Autoimmune Hepatitis

Abstract

Autoimmune hepatitis (AIH) is a chronic progressive inflammatory disease that can lead to cirrhosis if inadequately treated. Most patients require lifelong immunosuppression to halt disease progression and maintain remission [1]. Impairment in health-related quality of life (QoL) may stem from medication side effects, symptoms of portal hypertension, illness anxiety and fatigue, and psychosocial concerns such as financial and caregiver burden [2]. As in other chronic liver diseases (CLD), healthcare outcomes such as mortality and post-transplant graft survival are negatively impacted by socioeconomic, racial and ethnic disparities [3, 4]. Patient-reported outcomes (PROs) regarding health-related QoL and unmet needs in the AIH population are poorly understood, and the impact of low socioeconomic status (SES), racial or ethnic disparities on PROs is an emerging area of study.

In their cross-sectional survey study, Singleton et al. [5] identified several health-related unmet needs and diminished QoL across their cohort of patients with AIH, a select group from the Autoimmune Hepatitis Association (AIHA). Furthermore, the study demonstrated that these needs were exacerbated by low SES. A striking finding of this study was moderate–high unmet need for health information (71.8%) and high health-related stress/anxiety (89.1%) across all participants, despite their engagement in an AIH support organisation. Notably, participants low SES were 1.5–3 times more likely to have moderate or high burden in all queried domains (physical, psychosocial and health services-related). Because participants had to self-enroll and fill online surveys in English, the true burden of unmet needs and low SES amongst patients with AIH is likely underestimated.

This study opens the dialogue for efforts to address unmet needs in AIH and reduce disparity (Table 1). Creating multimedia resources and shareable materials regarding illness education, medications and side effects that are easily accessible, understandable and multilingual can improve the need for health information. Improved publicity of peer support groups (e.g., AIHA groups) to patients/caregivers and clinicians (e.g., at GI/liver society meetings) may address the need to speak with peers. Integrated care pathways with hepatologists, social workers, mental health professionals and pharmacists—a model already used in transplantation and alcohol-related liver disease clinics—could improve the quality of care for patients with AIH.

The study findings are also a call to action for better identification of patients with low SES. Although this study required self-reporting of variables such as annual household income and education level, more equitable identification of low SES should use an approach that does not require literacy, internet access, computer skills or English proficiency. Though screening instruments for low health literacy and low SES are available [5-7], administration of surveys to patients may be burdensome, difficult for patients to understand and impractical. Ultimately, a comprehensive social history obtained via conversation, using an interpreter if needed, will be most effective at eliminating barriers.

Identification of unmet needs and study of PROs is of paramount importance to improve the care, outcomes and QoL of patients with AIH. Validated instruments to measure these variables in the CLD and AIH populations are lacking. In the interim, we should champion creative efforts to measure and address the burdens our patients experience to provide equitable and high-quality care to all.

Seren Gedallovich: writing – original draft, conceptualization, writing – review and editing, resources. Aparna Goel: conceptualization, writing – review and editing, resources, supervision.

This article is linked to Singleton et al paper. To view this article, visit https://doi.org/10.1111/apt.18235.