The Global NASH Council, Washington DC, USA.
Organ Transplant Center of Excellence, King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
Saudi J Gastroenterol. 2024 Sep 1;30(5):335-341. doi: 10.4103/sjg.sjg_122_24. Epub 2024 Aug 22.
A recent name change of nonalcoholic fatty liver disease (NAFLD) or metabolic dysfunction-associated fatty liver disease (MAFLD) to metabolic dysfunction-associated steatotic liver disease was primarily driven by potential stigma associated with the terminology. This stigma can be different between patients and healthcare providers and differ according to geographic regions of the world. Our aim was to better understand stigma and disease burden among patients with NAFLD enrolled in the global survey from Saudi Arabia (SA).
Members of the Global NASH Council created a 68-item survey about patients' experience with NAFLD, covering history of stigmatization and discrimination due to the disease, various aspects of the disease burden [(Liver Disease Burden (LDB), 35 items, 7 domains], and perception of various diagnostic terms for NAFLD. Patients whose country of residence was SA were asked to complete the survey.
The survey was completed by 804 patients with NAFLD from SA. Of all enrolled patients, 17% ever disclosed having NAFLD/nonalcoholic steatohepatitis (NASH) to family/friends. The most commonly used term for the disease was "fatty liver" (96% used it at least sometimes, 79% frequently or always). There were 3.7% who reported experiencing stigma or discrimination (at least sometimes) due to obesity/overweight versus only 2.7% due to NAFLD. Female patients reported a history of stigmatization or discrimination more frequently than males: 5.9% versus 3.0% due to obesity ( P = 0.06) and 5.4% versus 1.8% due to NAFLD ( P = 0.01). There were 43% of patients who reported ever missing or avoiding a visit to a primary care provider due to NAFLD (48% male vs 28% female, P < 0.0001). The greatest social-emotional burden among patients with NAFLD (by LDB) was being or being identified as a person with liver disease (10% agree, 4% male vs 26% female) and feeling like they could not do anything about their liver disease (6.4% agree, 3% male vs 16% female). Regarding how patients perceived diagnostic terms, there were no substantial differences between "fatty liver disease", "NAFLD", "NASH", and "MAFLD".
Stigmatization in terms of disease burden, disease-related stigma, and perception of various diagnostic terms are rarely observed in patients with NAFLD in SA. In comparison to male patients, female patients with NAFLD reported more commonly a history of stigmatization and discrimination and a significantly greater disease burden. The findings will help inform policymakers to develop programs to increase awareness and provide education about stigma related to NAFLD.
非酒精性脂肪性肝病（NAFLD）或代谢相关脂肪性肝病（MAFLD）最近更名为代谢相关脂肪性肝病，主要是因为术语可能带来的潜在污名。这种污名在患者和医疗保健提供者之间可能不同，并且因世界不同地区而异。我们的目的是更好地了解沙特阿拉伯（SA）全球调查中 NAFLD 患者的污名和疾病负担。
全球 NASH 理事会的成员创建了一份关于患者 NAFLD 体验的 68 项调查，涵盖了因疾病而受到污名化和歧视的历史、疾病负担的各个方面[（肝脏疾病负担（LDB），35 项，7 个领域]，以及对各种 NAFLD 诊断术语的看法。居住在 SA 的患者被要求完成调查。
该调查由来自 SA 的 804 名 NAFLD 患者完成。在所有入组的患者中，17%的人曾向家人/朋友透露过自己患有 NAFLD/非酒精性脂肪性肝炎（NASH）。最常用的疾病术语是“脂肪肝”（96%的人至少有时使用，79%的人经常或总是使用）。有 3.7%的人报告因肥胖/超重而经历过污名化或歧视（至少有时），而只有 2.7%的人因 NAFLD 而经历过。女性患者比男性患者更频繁地报告有污名化或歧视的经历：因肥胖而经历污名化或歧视的比例为 5.9%，而男性为 3.0%（P=0.06），因 NAFLD 而经历污名化或歧视的比例为 5.4%，而男性为 1.8%（P=0.01）。有 43%的患者因 NAFLD 而错过或避免了一次初级保健就诊（48%的男性和 28%的女性，P<0.0001）。NAFLD 患者最大的社会情感负担（按 LDB 衡量）是成为或被认定为患有肝病的人（10%的人同意，4%的男性和 26%的女性），以及觉得自己无法治疗自己的肝病（6.4%的人同意，3%的男性和 16%的女性）。关于患者对诊断术语的看法，在“脂肪肝疾病”、“NAFLD”、“NASH”和“MAFLD”之间没有观察到实质性差异。
在沙特阿拉伯的 NAFLD 患者中，很少观察到疾病负担、与疾病相关的污名和对各种诊断术语的看法方面的污名化。与男性患者相比，患有 NAFLD 的女性患者更频繁地报告有污名化和歧视的经历，并且疾病负担显著更大。这些发现将有助于为政策制定者提供信息，以制定计划，提高对 NAFLD 相关污名的认识并提供相关教育。
