Abstract
Background:
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).
Methods:
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.
Results:
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”.
Conclusion:
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.
Keywords: Fatty, NAFLD, sex
INTRODUCTION
The main causes of liver disease are changing in all regions of the world including the Middle East and North Africa region and Saudi Arabia (SA).[1,2] Although hepatitis B virus (HBV) and hepatitis C virus (HCV) remain endemic in SA, extensive efforts to eliminate these two viruses have resulted in a significant decline in their prevalences.[3,4,5,6] On the other hand, the prevalence of obesity and type 2 diabetes has risen dramatically over the past decades, resulting in significant increases in metabolic dysfunction-associated steatotic liver disease (MASLD), previously known as nonalcoholic fatty liver disease (NAFLD) or metabolic dysfunction-associated fatty liver disease (MAFLD).[7,8,9,10,11,12,13] Recent studies have projected an enormous clinical and economic burden of obesity and liver diseases, particularly NAFLD, in SA in 2030–2040.[14,15,16]
Despite the increase in NAFLD, awareness of this liver disease remains low among both healthcare providers and patients.[17] Some providers have attributed low awareness to the prior name of this liver disease, NAFLD, and the stigma associated with this terminology.[12,13,18] In turn, low awareness has potentially led to decreased screening for high-risk patients with NAFLD and those with complications, such as cirrhosis and hepatocellular carcinoma. In fact, NAFLD is on target to become a leading indication for liver transplantation and increased healthcare utilization.[19,20,21]
This attribution of stigma and its role in hindering initiation or continuity of care is realistic, as previous studies have reported on stigma related to those with HBV and HCV.[22] Prior studies also highlighted the role of stigma in the avoidance of care.[23] In addition, a global study suggested that about 8% of patients and 40% of providers felt that NAFLD is stigmatizing. In contrast, 25% of patients felt that overweight and obesity are stigmatizing.[24] Although relatively low, the presence of stigma poses a significant burden and is associated with impairment of health-related quality of life.[25] While the global study provided general insights into NAFLD-associated stigma, a more granular analysis of the data from a country with a very high prevalence of NAFLD will provide additional valuable insights. Therefore, the purpose of this analysis is to better understand the stigma and disease burden among patients with NAFLD who were enrolled into the global survey from SA.
PATIENTS AND METHODS
A survey targeting patients with NAFLD was developed by the members of the Global NASH Council (globalnashcouncil.org). The study was approved by the WCG-IRB (Western-Copernicus Group Institutional Review Board) as an exempt study under 45 CFR ¦ 46.104(d)(2) dated October 13, 2022. This study was approved by each participating institution’s internal review board according to the Declarations of Helsinki. After obtaining approval from their respective institutional review boards or other supervisory institutions, the members of the Global NASH Council distributed links to the survey among their patients who had an established diagnosis of NAFLD or nonalcoholic steatohepatitis (NASH; recently changed to metabolic dysfunction-associated steatohepatitis); an electronic informed consent form was included with the surveys.[12] Other than having NAFLD or NASH and willingness and ability to complete the survey, no inclusion/exclusion criteria were recommended by the study protocol.[24,25] Only survey completers who reported residing in SA were included in this study. All investigators took responsibility for their forward and backward translation of the surveys into their native language, and all efforts were made to ensure the native language terminology closely matched the intent of the English terminology.
The 68-item survey included questions about individuals’ basic demographics, select socioeconomic parameters, presence/severity of liver fibrosis, and nonhepatic comorbidities and was also inclusive of the 35 questions from the Liver Disease Burden (LBD) survey as described below. Patients were then asked whether they had ever disclosed their NAFLD/NASH to family or friends and, if so, which diagnostic terms they used to refer to the disease, about the history of discrimination or stigmatization due to liver disease and other health conditions, and whether they had ever avoided or missed a healthcare visit due to NAFLD. Finally, patients were asked what they thought of the various diagnostic terms for NAFLD and whether any of those terms would make them feel comfortable or uncomfortable.[24,25]
The specifically designed 35-item LDB questionnaire covers various aspects of liver disease burden.[25] In all the items of LDB, participants were asked to what extent they agree with a certain statement regarding their disease burden (for example, “I feel uncomfortable because I am a person with liver disease”); the responses were scored 1–4 with higher scores indicating a greater self-reported disease burden. The items were grouped into seven domains, as described previously, and the LDB domain scores were calculated as an average of their constituent items.[25]
Only patients from SA who completed the survey up to the last question and clicked the “submit” button were included in the analysis; however, the electronic data collection form did not require answering all the questions before the participant could hit the submit button. The survey was administered electronically via a secure web link without collecting personal identifiers. The completed survey data were stored in a central database.
Statistical analysis
Only observed entries were used for the analysis. The frequencies of answers were summarized as n (%) and compared between the groups using the Chi-square test; the nonparametric Mann–Whitney test was used for continuous variables. Two-sided P values less than 0.05 were considered statistically significant. All analyses were performed using SAS 9.4 (SAS Institute, Cary, NC, USA).
RESULTS
The survey was completed by 804 patients with NAFLD from SA; of those, 75% were male. Of all included patients, 63% were between 25 and 44 years old, 23% were ≥45 years old, 7% were obese (body mass index >30 kg/m2), 79% were living in urban regions, 76% were with a college degree, 84% were employed, 9% had type 2 diabetes, 87% had no comorbidities, and 1.2% had cirrhosis [Table 1].
Table 1.
Sociodemographic characteristics and medical history of patients with NAFLD from SA who completed the survey
| Description | Male | Female | P* | All |
|---|---|---|---|---|
| n | 599 | 205 | 804 | |
| Age group | ||||
| 18-24 years | 88 (14.7%) | 22 (10.7%) | 0.15 | 110 (13.7%) |
| 25-34 years | 177 (29.5%) | 76 (37.1%) | 0.0453 | 253 (31.5%) |
| 35-44 years | 203 (33.9%) | 48 (23.4%) | 0.0052 | 251 (31.2%) |
| 45-54 years | 75 (12.5%) | 20 (9.8%) | 0.29 | 95 (11.8%) |
| 55-70 years | 50 (8.3%) | 35 (17.1%) | 0.0005 | 85 (10.6%) |
| >70 years | 6 (1.0%) | 4 (2.0%) | 0.29 | 10 (1.2%) |
| BMI, kg/m2 | 24.8±4.6 | 24.4±3.2 | 0.16 | 24.7±4.3 |
| Place of residence | ||||
| Urban area | 483 (80.6%) | 148 (72.2%) | 0.0111 | 631 (78.5%) |
| Suburban area | 88 (14.7%) | 42 (20.5%) | 0.05 | 130 (16.2%) |
| Rural area | 28 (4.7%) | 15 (7.3%) | 0.15 | 43 (5.3%) |
| Education | ||||
| No schooling completed | 0 (0.0%) | 1 (0.5%) | 0.09 | 1 (0.1%) |
| Up to 6 years (primary school) | 12 (2.0%) | 27 (13.2%) | <.0001 | 39 (4.9%) |
| Up to 12 years (high school) | 110 (18.4%) | 41 (20.0%) | 0.60 | 151 (18.8%) |
| Bachelor degree | 420 (70.1%) | 116 (56.6%) | 0.0004 | 536 (66.7%) |
| Postgraduate degree | 57 (9.5%) | 20 (9.8%) | 0.92 | 77 (9.6%) |
| Lives with a partner | 380 (63.5%) | 113 (55.1%) | 0.0325 | 493 (61.4%) |
| Employed | 544 (90.8%) | 128 (62.7%) | <.0001 | 672 (83.7%) |
| Owns a home | 271 (45.3%) | 80 (39.0%) | 0.12 | 351 (43.7%) |
| Current financial difficulties | ||||
| None | 456 (76.1%) | 158 (77.1%) | 0.78 | 614 (76.4%) |
| A little | 118 (19.7%) | 38 (18.5%) | 0.72 | 156 (19.4%) |
| A lot | 25 (4.2%) | 9 (4.4%) | 0.89 | 34 (4.2%) |
| Has healthcare coverage | 510 (85.1%) | 177 (86.3%) | 0.67 | 687 (85.4%) |
| Ever lost weight for medical reasons | 11 (1.8%) | 1 (0.5%) | 0.17 | 12 (1.5%) |
| Chronic illnesses or health problems in addition to NAFLD/NASH | ||||
| None | 528 (88.1%) | 169 (82.4%) | 0.0378 | 697 (86.7%) |
| One | 62 (10.4%) | 27 (13.2%) | 0.27 | 89 (11.1%) |
| Two | 8 (1.3%) | 8 (3.9%) | 0.0231 | 16 (2.0%) |
| Three or more | 1 (0.2%) | 1 (0.5%) | 0.43 | 2 (0.2%) |
| Diabetes or high blood sugar | 46 (7.7%) | 29 (14.2%) | 0.0057 | 75 (9.4%) |
| Know their fibrosis severity | 573 | 198 | 771 | |
| Minimal or moderate fibrosis | 525 (91.6%) | 189 (95.5%) | 0.08 | 714 (92.6%) |
| Severe fibrosis | 41 (7.2%) | 7 (3.5%) | 0.07 | 48 (6.2%) |
| Cirrhosis | 7 (1.2%) | 2 (1.0%) | 0.81 | 9 (1.2%) |
| Current smoker | 146 (24.4%) | 3 (1.5%) | <.0001 | 149 (18.5%) |
*P-value returned by Chi–square or Mann–Whitney nonparametric tests
Of all enrolled patients with NAFLD from SA, 17% ever disclosed having NAFLD/NASH to family/friends and women substantially more commonly than men (41% vs 9%, P < 0.0001) [Table 2]. The most used word for the disease was “fatty liver” (96% used it at least sometimes, 79% frequently or always) [Figure 1]. At the same time, “NAFLD or NASH” and “liver steatosis” were never used by >94% of patients, and “liver disease” and “metabolic liver disease” were never used by > 75% [Figure 1]. Interestingly, the term “MAFLD (metabolic associated fatty liver disease)” was used by 50% at least sometimes, 20% frequently or always [Figure 1].
Table 2.
Patients’ self-reported history of stigma or discrimination and care avoidance
| Question | Male | Female | P | All |
|---|---|---|---|---|
| Have you ever disclosed that you have NAFLD or NASH with a family member or friend? | 52 (8.7%) | 84 (41.0%) | <.0001 | 136 (17.0%) |
| To what extent have you ever experienced stigma or discrimination (by a doctor or nurse, by a family member or friends) due to your liver disease (NAFLD)? | ||||
| Not concerned | 277 (46.4%) | 49 (23.9%) | <.0001 | 326 (40.6%) |
| Never | 309 (51.8%) | 145 (70.7%) | <.0001 | 454 (56.6%) |
| Sometimes | 8 (1.3%) | 11 (5.4%) | 0.0011 | 19 (2.4%) |
| Frequently | 3 (0.5%) | 0 (0.0%) | 0.31 | 3 (0.4%) |
| Always | 0 (0.0%) | 0 (0.0%) | 0.99 | 0 (0.0%) |
| To what extent have you ever experienced stigma or discrimination due to being overweight or obese? | ||||
| Not concerned | 304 (50.8%) | 64 (31.2%) | <.0001 | 368 (45.8%) |
| Never | 276 (46.2%) | 129 (62.9%) | <.0001 | 405 (50.4%) |
| Sometimes | 16 (2.7%) | 10 (4.9%) | 0.12 | 26 (3.2%) |
| Frequently | 2 (0.3%) | 2 (1.0%) | 0.26 | 4 (0.5%) |
| Always | 0 (0.0%) | 0 (0.0%) | 0.99 | 0 (0.0%) |
| Have you ever avoided planning a visit or missed a scheduled visit with a primary care physician because of NAFLD? (% yes) | 289 (48.3%) | 58 (28.3%) | <.0001 | 347 (43.2%) |
| Have you ever avoided planning a visit or missed a scheduled visit with an endocrinologist? (% yes if applicable) | 7 (5.3%) | 9 (13.4%) | 0.0481 | 16 (8.1%) |
| Have you ever avoided planning a visit or missed a scheduled visit with your gastroenterologist/hepatologist? (% yes if applicable) | 6 (1.9%) | 10 (6.4%) | 0.0118 | 16 (3.4%) |
Figure 1.
Words used by patients with NAFLD from SA to describe their disease (“When you disclose your disease to family or friends, please indicate how frequently you use the following terms to describe it?”)
There were 3.7% of patients who reported experiencing stigma or discrimination (at least sometimes) due to obesity/overweight versus 2.7% due to NAFLD [Table 2]. Female patients reported a history of stigmatization or discrimination more frequently than males due to obesity: 5.9% versus 3.0% (P = 0.06) and due to NAFLD 5.4% versus 1.8% (P = 0.01) [Table 2]. 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) [Table 2]. The visits to specialists, when applicable, were avoided or missed by substantially fewer patients (3.4% gastroenterologists or hepatologists and 8.1% endocrinologists). There were differences in missed visits by sex as males missed fewer visits to both the endocrinologist (5.3% vs 13.4%, P = 0.0481) and the gastroenterologists/hepatologists (1.9% vs 6.4%, P = 0.0118) compared to females [Table 2].
Regarding how diagnostic terms were perceived by patients, there were no substantial differences between “fatty liver disease”, “NAFLD”, “NASH”, and “MAFLD”. The most popular response was being neither comfortable nor uncomfortable with either term (81%–97%), while only 0.2–1.5% were uncomfortable with any of those terms, similar between male and female patients [Table 3].
Table 3.
Perception of diagnostic terms for NAFLD by patients from SA (“How would the following diagnosis terms make you feel?”)
| Term for NAFLD | Male | Female | P | All |
|---|---|---|---|---|
| “Fatty liver” | ||||
| Extremely uncomfortable | 1 (0.2%) | 0 (0.0%) | 1 (0.1%) | |
| Uncomfortable | 1 (0.2%) | 1 (0.5%) | 2 (0.2%) | |
| Neither | 506 (84.5%) | 146 (71.2%) | <.0001 | 652 (81.1%) |
| Comfortable | 80 (13.4%) | 57 (27.8%) | 137 (17.0%) | |
| Extremely comfortable | 11 (1.8%) | 1 (0.5%) | 12 (1.5%) | |
| “NAFLD” | ||||
| Extremely uncomfortable | 2 (0.3%) | 2 (1.0%) | 4 (0.5%) | |
| Uncomfortable | 6 (1.0%) | 2 (1.0%) | 8 (1.0%) | |
| Neither | 581 (97.2%) | 199 (97.1%) | 0.57 | 780 (97.1%) |
| Comfortable | 9 (1.5%) | 2 (1.0%) | 11 (1.4%) | |
| Extremely comfortable | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| “NASH” | ||||
| Extremely uncomfortable | 2 (0.3%) | 3 (1.5%) | 5 (0.6%) | |
| Uncomfortable | 5 (0.8%) | 2 (1.0%) | 7 (0.9%) | |
| Neither | 581 (97.3%) | 199 (97.1%) | 0.26 | 780 (97.3%) |
| Comfortable | 9 (1.5%) | 1 (0.5%) | 10 (1.2%) | |
| Extremely comfortable | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| “MAFLD” | ||||
| Extremely uncomfortable | 1 (0.2%) | 0 (0.0%) | 1 (0.1%) | |
| Uncomfortable | 0 (0.0%) | 1 (0.5%) | 1 (0.1%) | |
| Neither | 527 (88.1%) | 170 (82.9%) | 0.06 | 697 (86.8%) |
| Comfortable | 57 (9.5%) | 29 (14.1%) | 86 (10.7%) | |
| Extremely comfortable | 13 (2.2%) | 5 (2.4%) | 18 (2.2%) |
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 cannot do anything about their liver disease” (6.4% agree, 3% male vs 16% female) [Figure 2, Supplementary Table 1]. As such, among seven domains of the LDB instrument, the highest scores (the greatest burden) for both sexes were observed in the Self-Perception domain, although all burden scores were significantly higher in female patients (all P < 0.01) [Table 4].
Figure 2.
The items of LDB that returned the highest average burden scores among patients with NAFLD from SA. (a) Identifying as a person with liver disease causes me inconvenience in my daily life; (b) To be identified as a person with liver disease hurts my life; (c) I feel uncomfortable because I am a person with liver disease; (d) I feel like I can’t do anything about my liver disease status
Supplementary Table 1.
LDB items score on a scale 1–4 (Strongly disagree=1; Disagree=2; Agree=3; Strongly agree=4; higher score indicates worse burden; mean±SD)
| LDB item (LDB domain) | Male | Female | P | All |
|---|---|---|---|---|
| n | 599 | 205 | 804 | |
| Identifying as person with liver disease is a burden for me (Self-perception) | 1.68±0.53 | 1.96±0.69 | <.0001 | 1.75±0.59 |
| Identifying as a person with liver disease causes me inconvenience in my daily life (Self-perception) | 1.68±0.53 | 2.02±0.73 | <.0001 | 1.76±0.61 |
| To be identified as a person with liver disease hurts my life (Self-perception) | 1.70±0.56 | 2.10±0.79 | <.0001 | 1.80±0.65 |
| I feel uncomfortable because I am a person with liver disease (Self-perception) | 1.69±0.57 | 2.18±0.84 | <.0001 | 1.82±0.68 |
| I am afraid that others will know that I am a person with liver disease (Self-perception) | 1.63±0.49 | 1.77±0.46 | 0.0006 | 1.67±0.49 |
| I feel like I cannot do anything about my liver disease status (Self-perception) | 1.68±0.57 | 2.04±0.81 | <.0001 | 1.78±0.66 |
| I set myself apart from others because I am a person with liver disease (Isolation) | 1.64±0.53 | 1.77±0.50 | 0.0023 | 1.67±0.53 |
| I avoid interacting with others because I am a person with liver disease (Isolation) | 1.64±0.53 | 1.75±0.45 | 0.0037 | 1.67±0.51 |
| I hesitate to make new friends in case they discover that I am a person with liver disease (Isolation) | 1.64±0.54 | 1.76±0.50 | 0.0021 | 1.67±0.53 |
| Some people assume that because I have liver disease, I must have been a drinker (Stigma) | 1.62±0.49 | 1.75±0.43 | 0.0006 | 1.65±0.48 |
| Other people think I am partially to blame for my liver disease (Stigma) | 1.62±0.50 | 1.77±0.47 | 0.0004 | 1.66±0.49 |
| Some people believe I have liver disease because I do not eat properly (Stigma) | 1.67±0.56 | 1.85±0.58 | 0.0003 | 1.72±0.57 |
| I feel like some people are concerned that my liver disease could be contagious (Social life) | 1.63±0.52 | 1.75±0.43 | 0.0005 | 1.66±0.50 |
| I feel like other people think I am a bad person because I have liver disease (Social life) | 1.62±0.49 | 1.76±0.43 | 0.0004 | 1.65±0.48 |
| People with liver disease are looked down upon by society (Stigma) | 1.61±0.49 | 1.76±0.43 | 0.0001 | 1.65±0.48 |
| Because I have NAFLD or NASH, some people assume I must be overweight or have been in the past (Stigma) | 1.63±0.50 | 1.78±0.45 | 0.0001 | 1.67±0.49 |
| Some doctors or nurses do not like taking care of patients with liver disease (Healthcare) | 1.62±0.50 | 1.78±0.48 | 0.0001 | 1.66±0.50 |
| I feel I have been treated with less respect by others because of my liver disease (Social life) | 1.62±0.51 | 1.76±0.44 | 0.0002 | 1.66±0.49 |
| I believe when people learn I have liver disease they treat me differently than if I did not have this disease (Social life) | 1.64±0.56 | 1.78±0.46 | 0.0004 | 1.68±0.54 |
| When diagnosed with NAFLD or NASH, I felt shame when hearing the words “non-alcoholic.” (Term “alcoholic”) | 1.62±0.49 | 1.76±0.44 | 0.0002 | 1.65±0.48 |
| When diagnosed with NAFLD or NASH, I felt shame when hearing the word “fatty.” (Term “fatty”) | 1.62±0.49 | 1.77±0.47 | 0.0002 | 1.66±0.49 |
| I feel like I am partially to blame for my liver disease (Stigma) | 1.62±0.50 | 1.78±0.46 | 0.0002 | 1.66±0.49 |
| I feel less competent that I did before I was diagnosed with liver disease (Social life) | 1.65±0.54 | 1.79±0.47 | 0.0004 | 1.69±0.53 |
| Because of my liver disease, I feel flawed and incomplete (Stigma) | 1.62±0.50 | 1.76±0.44 | 0.0004 | 1.66±0.49 |
| Because of my liver disease, I sometimes feel useless (Social life) | 1.62±0.51 | 1.76±0.44 | 0.0005 | 1.66±0.49 |
| I avoid telling other people about my liver disease (Stigma) | 1.63±0.50 | 1.79±0.47 | 0.0001 | 1.67±0.50 |
| I feel lonely more often than usual because of my liver disease (Social life) | 1.61±0.49 | 1.77±0.47 | 0.0001 | 1.65±0.49 |
| I feel like I am an outsider because of my liver disease (Social life) | 1.61±0.49 | 1.76±0.44 | 0.0002 | 1.65±0.48 |
| I avoid doing some things in public because of my liver disease (Social life) | 1.61±0.49 | 1.76±0.44 | 0.0002 | 1.65±0.48 |
| My liver disease makes me stand out to other people (Social life) | 1.63±0.51 | 1.77±0.43 | 0.0001 | 1.66±0.49 |
| Some people avoid me because of my liver disease (Social life) | 1.62±0.49 | 1.76±0.44 | 0.0001 | 1.65±0.48 |
| I feel abandoned by family members because of my liver disease (Social life) | 1.62±0.49 | 1.76±0.43 | 0.0003 | 1.65±0.48 |
| Since my diagnosis of NAFLD or NASH I feel less socially involved and engaged (Social life) | 1.62±0.49 | 1.77±0.46 | 0.0002 | 1.65±0.48 |
| Does it bother you that your liver problem is called non-alcoholic? (Term “alcoholic”) | 1.62±0.50 | 1.77±0.46 | 0.0002 | 1.66±0.49 |
| Does it bother you that your liver problem is called fatty liver? (Term “fatty”) | 1.63±0.53 | 1.77±0.45 | 0.0002 | 1.67±0.51 |
Table 4.
LDB domain scores on a scale 1–4
| Male | Female | P | All | |
|---|---|---|---|---|
| Social life | 1.62±0.49 | 1.76±0.43 | 0.0013 | 1.66±0.48 |
| Stigma | 1.63±0.48 | 1.78±0.43 | 0.0001 | 1.67±0.47 |
| Self-perception™ | 1.68±0.51 | 2.01±0.58 | <0.0001 | 1.76±0.55 |
| Isolation | 1.64±0.51 | 1.76±0.46 | 0.0036 | 1.67±0.50 |
| Term “fatty” | 1.63±0.50 | 1.77±0.45 | 0.0003 | 1.66±0.49 |
| Term “alcoholic” | 1.62±0.49 | 1.76±0.44 | 0.0002 | 1.65±0.48 |
| Healthcare burden | 1.62±0.50 | 1.78±0.48 | 0.0001 | 1.66±0.50 |
| Total score | 1.64±0.48 | 1.81±0.41 | <0.0001 | 1.68±0.47 |
The individual items are shown in Supplementary Table 1
DISCUSSION
This is an in-depth analysis of the perceived liver disease burden among patients with NAFLD from SA. There were several interesting findings from this study. First, only 17% reported informing their family or friends that they had a liver disease, which is much lower than that in the global study, where 48% of patients with NAFLD reported having a liver disease.[24,25] The exact reasons are unknown but may be related to the importance of privacy about medical conditions or fearing stigmatization by family members. In fact, data from patients with HCV suggest that the lack of disclosure about their liver disease may be related to anticipated stigma and discrimination.[26,27,28] This contrasts with the very low rates of stigma reported by patients regarding NAFLD or obesity. It is plausible that the stigma here is not related to the term NAFLD but to having chronic liver disease. Future studies to separate stigma related to the term from those related to having a liver disease or being obese should be undertaken.
Second, “fatty liver” was the term used most often when describing their liver disease, which could suggest that this term may be more accepting to patients in SA and could be used to discuss NAFLD with patients to reduce anticipated stigma and discrimination. This suggestion falls in line with what has recently been reported among those with HCV that when there are lower levels of shame or efforts to reduce shame, positive health-related behavior is more likely to happen.[29] More research on this concept is needed, especially regarding increased awareness and disease outcomes. However, it is evident from this study that avoiding healthcare due to potential stigma was present in more than 40% of patients with NAFLD, suggesting that efforts to address stigma could be useful.
Putting our findings into context, the efforts to address stigma may need to be sex-specific as females reported significantly more perceived stigma related to obesity and having NAFLD than males. On the other hand, males may not have reported as much perceived stigmatization or discrimination, but they were significantly more likely not to attend a primary care visit, suggesting there may be more stigma present as noted through care avoidance rather than particular terminology used. This suggestion also needs further investigation as it is well known that males have a much lower rate of attending healthcare appointments than females for various reasons.[30,31,32] Furthermore, societal constructs may also shape the overall reporting of stigma as it relates to NAFLD.[23] This was noted in the finding that the largest social-emotional burden among patients with NAFLD was being identified as a person with liver disease and feeling like “they cannot do anything about their liver disease.” As such, efforts to increase awareness about what NAFLD is and is not and how one can prevent and/or mediate their liver disease, as well as addressing any misperception, need special attention.[33] The use of language that does not cause stigma or is not discriminating, especially among females, should also be considered.
The limitations of the study include its cross-sectional design and a limited number of clinical parameters available for hypothesis testing. The study sample was biased toward younger male patients with NAFLD of high socioeconomic status; therefore, further studies are needed to include a more diverse patient population from this country.
In conclusion, stigmatization related to the disease burden, disease-related stigma, and perception of various diagnostic terms were rarely reported by patients with NAFLD in SA. In comparison to male patients with NAFLD from SA, female patients reported more commonly a history of stigmatization and discrimination, especially related to obesity and NAFLD, as well as a significantly greater disease burden. On the other hand, males were more likely to avoid attending primary care visits due to NAFLD. These results will help inform policymakers when developing programs to increase awareness and provide education about NAFLD to use a societal systematic approach rather than a singular healthcare approach to address all factors that may be related to the stigma and NAFLD.
Financial support and sponsorship
This study is partially funded by the Global NASH Council, Center for Outcomes Research in Liver Disease, Washington DC, the King Faisal Specialist Hospital and Research Centre, Riyadh, Saudi Arabia, Beatty Liver and Obesity Research Program, IHS, Falls Church VA and from the National Plan for Science, Technology, and Innovation (MAARIFAH), King Abdul-Aziz City for Science and Technology, Riyadh, Kingdom of Saudi Arabia, grant Number 08-MED512-02.
Conflicts of interest
There are no conflicts of interest.
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