By Craig Lammert, M.D.
AIHA Executive Director
Over the past decade, numerous studies have clearly shown that individuals with autoimmune hepatitis (AIH) experience a lower overall quality of life compared to those without AIH. Adding to these challenges, there are also data suggesting that there are other key disease differences that exist across varying populations of AIH patients, including race, ethnicity, and socioeconomic status.
For instance, Black and Hispanic patients with AIH, as well as families with lower incomes or families without jobs, experience poorer outcomes with the disease. This includes higher rates of hospitalization and worse outcomes after transplantation. Part of the problem may be linked to unmet health-related needs. These needs revolve around the patients’ understanding of issues requiring support and health services. Understanding these is critical, as addressing these gaps could improve outcomes for all AIH patients.
A paper published this past month in collaboration with the Autoimmune Hepatitis Association (using member responses) sought to understand the spectrum of healthcare-related needs in AIH and further examine how they differ according to socioeconomic status. The authors used a digital tool called the Systemic Lupus Erythematosus Patient Needs Questionnaire, which has previously been applied to lupus patients. Patients reporting “low” vs. “moderate-high” needs across different categories were compared.
Among 410 AIH patients who completed this study, 111 (25.6%) were categorized as low socioeconomic status. (Low was defined as participants reporting any annual household income < 30k per year, high school education or less, Medicaid or self-pay insurance, report of moderate-high concern for lack of reliable transportation, food, or housing in the last year, or reporting difficulty with living expenses in the past year.)
There were multiple key findings:
- High levels of health-related unmet needs and diminished quality of life were found across the entire group studied.
- Low socioeconomic status seems to predict even more needs and worsen quality of life. (Up to 3x more likely to have moderate to high needs for all categories.)
- Key areas of health-related needs were identified as moderate-high needs across all patients: 71.8% reported health information needs, and 73.4% reported health service needs.
The authors believe that we can no longer ignore the unmet health-related needs in AIH. This represents an area of expanding knowledge and hopeful change. Partnering with non-profit organizations such as the AIHA could be a huge step forward for patients.
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