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Patient experience and advocacy

Source method and ethics rules for the non-journal material on this page are in literature/patient-voice/README.md. Public sources only; paraphrase; no identifying details of private individuals; themes reported in aggregate.

TL;DR — The stigma argument that drove the 2023 renaming was measured in panellists, not in patients, and when patients were finally surveyed the picture was more complicated than the rationale assumed. Across 1,976 patients in 23 countries and 825 providers in 25 countries, only 8% of patients reported stigmatisation or discrimination because of their liver disease, while 26% reported stigma related to overweight or obesity; most patients were "neither comfortable nor uncomfortable" with any of the diagnostic terms (56–71%), and 88% used "fatty liver" at least sometimes. Providers thought differently: 38% believed "fatty" was stigmatising, 34% believed "nonalcoholic" was, and 42% believed a name change to MASLD might reduce stigma (Younossi 2024, PMID 37984709). The authors' own conclusion is that there is "a disconnect between physicians and patients related to stigma and related nomenclature". Health-related quality of life is measurable and treatment-responsive: in MAESTRO-NASH, patients who met a histological endpoint on resmetirom improved on the CLDQ-NAFLD Worry domain (+0.46, 41% meeting the minimal clinically important difference) and on LDQOL Role Emotional (+3.0), Health Distress (+8.1), Stigma (+3.5, 39% meeting MCID) and total score (+2.2), with no improvement in placebo or in non-responders (Younossi 2025, PMID 39250515). Patient-reported outcomes have nonetheless been described as "a blind spot that needs addressing" in this field's trials (Sena 2023, PMID 36536958). A small interview-based literature does exist, and it finds three things the clinical account misses: the disease is not experienced as asymptomatic, diagnosis is preceded by misdiagnosis and followed by an information vacuum, and patients rank their weight above their liver as a concern.

What patients actually report about stigma

Global NASH Council cross-sectional survey: a 68-item patient survey and a 41-item provider survey (Younossi 2024, PMID 37984709).

Respondents Distribution
1,976 patients across 23 countries 51% Middle East/North Africa, 19% Europe, 17% USA, 8% Southeast Asia, 5% South Asia
825 providers across 25 countries 39% MENA, 28% Southeast Asia, 22% USA, 6% South Asia, 3% Europe; 67% gastroenterologists/hepatologists
Finding Patients Providers
Ever disclosed the diagnosis to family or friends 48% —
Term used at least sometimes: "fatty liver" 88% —
Terms rarely used: "metabolic disease" or "MAFLD" never used by >84% —
Comfort with diagnostic terms (NAFLD, FLD, NASH, MAFLD) 56–71% "neither comfortable nor uncomfortable"; no substantial differences between terms —
Discomfort with "fatty liver disease" specifically 47–52% uncomfortable among US and South Asian patients —
Stigma related to overweight/obesity 26% —
Stigma or discrimination due to the liver disease 8% —
Believe "fatty" is stigmatising — 38%
Believe "nonalcoholic" is stigmatising — 34% (43% in MENA)
Believe the MASLD name change might reduce stigma — 42% (gastroenterologists/hepatologists 45% vs other specialties 37%, p=0.03)
Consider "steatotic liver disease" stigmatising — 14%

Three things follow. The patient-reported stigma burden attaches predominantly to body weight, not to the liver diagnosis. Perception varies by geography and by sub-specialty rather than being uniform. And the 2023 Delphi's stigma figures (61% for "nonalcoholic", 66% for "fatty") were panellist perceptions (nomenclature and definitions; Rinella 2023, PMID 37363821) that sit close to this survey's provider figures (34%, 38%) and far above what patients report about their own experience.

That does not make the rename wrong — reducing a term that a third of clinicians find stigmatising has value, and "fatty liver disease" did make about half of US and South Asian patients uncomfortable — but it does mean the empirical case for a patient-experienced stigma reduction has not been made, and the rename's effect on patient experience remains unmeasured.

Quality of life, and its responsiveness to treatment

The MAESTRO-NASH HRQL analysis (n=966 intention-to-treat: 323 on resmetirom 100 mg, 322 on 80 mg, 321 placebo; CLDQ-NAFLD and LDQOL instruments) (Younossi 2025, PMID 39250515):

Comparison Result at week 52
Resmetirom 80 or 100 mg vs placebo, all patients CLDQ-NAFLD Worry domain +0.21 to +0.24 (p<0.05) by weeks 24 and 52
Histological responders on resmetirom (doses pooled) CLDQ-NAFLD Worry +0.46 (41% met MCID); LDQOL Role Emotional +3.0 (28% MCID); Health Distress +8.1 (38% MCID); Stigma +3.5 (39% MCID); total LDQOL +2.2 (35% MCID); all p<0.05
Placebo patients and non-responders no improvements
Baseline F3 histological responders similar or more pronounced improvements

Two readings are worth keeping apart. The overall drug-versus-placebo effect on quality of life is small and confined to a "Worry" domain — plausibly the reassurance of being treated. The larger improvements are in responders, which is not a randomised comparison and cannot separate the effect of improving from the characteristics of people who improve. What the analysis does establish is that a Stigma domain moves measurably when disease activity resolves, which is a different kind of evidence about stigma than the naming survey provides.

The field's broader instrument problem was stated directly in 2023: patient-reported outcomes in NAFLD/NASH clinical trials are "a blind spot that needs addressing" (Sena 2023, PMID 36536958). Methodological guidance on measuring HRQL and patient-reported outcomes in chronic liver disease has since been published (Younossi 2026, PMID 41072803), and the question of quality of life in chronic liver disease has been raised in the field for over two decades (Younossi 2001, PMID 11208742).

The symptoms clinicians call absent

The single most reproducible finding in the qualitative literature is that patients report symptoms where the clinical description says there are none. Two independent bodies of work now give that a mechanism and a burden estimate rather than leaving it as a discrepancy of impression.

Fatigue and physical function. Across the health-economics and patient-reported-outcome literature, NAFLD's quality-of-life impairment is most pronounced in physical-health-related and fatigue domains and in work productivity, worsens with advanced liver disease and with non-hepatic comorbidity, and is accompanied by a substantial and rising economic burden concentrated in advanced disease (Stepanova 2023, PMID 37024220). The domains impaired are exactly the ones patients volunteer in concept-elicitation interviews (fatigue 18/23, poor sleep 12/23; PMID 33336323), which is a convergence between two very different methods.

Cognition. The "fibrofog"-like complaints elicited by NASH-CHECK — impaired memory in 13 of 23 and reduced focus in 11 of 23 — are no longer unexplained. A dedicated review of the liver–brain axis in MASLD finds studies associating MASLD with compromised brain health and cognitive dysfunction, and proposes inflammation, vascular disease, and brain ageing/neurodegeneration as the plausible contributors acting together (Mikkelsen 2025, PMID 39701123). Its three stated research needs are precisely the gaps that make the patient account hard to act on: no agreed test for diagnosing cognitive dysfunction in MASLD, no established correlation between MASLD stage and severity of cognitive impairment, and no evidence on whether MASLD-targeted therapies improve it. Given the prevalence, the review's own framing is that a large fraction of the population may be at risk of an unmeasured cognitive burden.

Mood, and the direction of causation. Depression is associated with MASLD, but causal direction is unresolved. Pooling six observational studies (28,922 depression cases among 167,554 participants) gave OR 1.14 (1.05–1.24), p=0.002 for developing NAFLD; two-sample Mendelian randomisation in the same paper found no evidence of a causal effect of genetically predicted depression on NAFLD (OR 0.861, 0.598–1.238, p=0.420) (Li 2024, PMID 38387674). The null genetic-instrument result does not establish reverse causation or distinguish effects of shared metabolic exposures from effects of the diagnosis experience.

The awareness problem

The public-health consensus statement is the most direct institutional acknowledgement that this is a disease patients cannot advocate about because they do not know they have it. It records that health system and public health responses "have been weak and fragmented", that "despite its pervasiveness, NAFLD is largely unknown outside hepatology and gastroenterology", that only a "nascent global public health movement" addresses it, and that the disease is "absent from nearly all national and international strategies and policies for non-communicable diseases, including obesity" (Lazarus 2022, PMID 34707258). The AHA statement adds the clinical corollary: the condition is typically silent until advanced liver impairment occurs, so "the majority of patients with NAFLD are unaware of having this serious condition" (Duell 2022, PMID 35418240).

Only 48% of surveyed patients had ever told family or friends about the diagnosis (PMID 37984709) — a disclosure rate that both reflects and reproduces low public visibility.

Organisations verified live

Sites retrieved 2026-09-02. Full annotations and the verification method are in literature/patient-voice/organizations.md.

Organisation Region URL Verified
Fatty Liver Foundation USA https://www.fattyliverfoundation.org/ 2026-09-02 (HTTP 200)
Liver Canada / Canadian Liver Foundation Canada https://liver.ca/patients-caregivers/liver-diseases/fatty-liver-disease/ 2026-09-02 (HTTP 200)
Liver Foundation (Australia) Australia https://www.liver.org.au/your-liver/liver-diseases/fatty-liver-disease/ 2026-09-02 (HTTP 200)
Liver Foundation, West Bengal India https://www.liverfoundation.in/ 2026-09-02 (HTTP 200)
Liver Patients International International https://www.liverpatientsinternational.org/ 2026-09-02 (HTTP 200)
NHS — non-alcoholic fatty liver disease UK (public health service) https://www.nhs.uk/conditions/non-alcoholic-fatty-liver-disease/ 2026-09-02 (HTTP 200)
NIDDK — NAFLD & NASH USA (government) https://www.niddk.nih.gov/health-information/liver-disease/nafld-nash 2026-09-02 (HTTP 200)

Audit update, 2026-09-02. Repeat live retrieval resolved the earlier access failures: the American Liver Foundation and Global Liver Institute returned HTTP 200, and the British Liver Trust address redirected successfully to Liver UK. ELPA's former elpa-info.org address failed, but its current official site, https://elpa.eu/, returned HTTP 200. The literature directory records the final verified URLs.

Public-facing terminology as of 2026-09-02. Both government health portals verified above still title their page "non-alcoholic fatty liver disease" rather than MASLD — the NHS page as "Non-alcoholic fatty liver disease (NAFLD)" and the NIDDK page as "Nonalcoholic Fatty Liver Disease (NAFLD) & NASH". Three years after the nomenclature change, the terms patients meet when they search are still the old ones, which is consistent with the survey finding that 88% of patients use "fatty liver" and >84% never use "MAFLD" (PMID 37984709).

The qualitative literature, and what it actually finds

An initial search on stigma OR "quality of life" OR "patient-reported outcomes" OR qualitative returned mostly survey and instrument work; a targeted re-run on 2026-09-02 — (NAFLD OR MASLD OR NASH OR "fatty liver") AND ("qualitative study" OR "semi-structured interview" OR "focus group" OR "lived experience" OR "illness perception"), 133 records — found a small but real interview-based literature. It is worth stating plainly that the first search produced a false impression of absence.

Study Design Principal findings
Stine 2024, PMID 38780312 28 one-to-one interviews with US adults with MASH and fibrosis, enriched for PNPLA3 I148M carriers (n=10) and Hispanic patients (n=8) A long process of misdiagnoses before the MASH diagnosis, a lack of clear information from clinicians, and limited access to support groups. Hispanic patients reported "impact on family/friends" (75%) and "fear of disease progression" (75%) more often than other cohorts — the first report of fear of progression in MASH
Doward 2021, PMID 33336323 23 concept-elicitation and 20 cognitive-debriefing interviews to build the NASH-CHECK patient-reported outcome measure Non-cirrhotic NASH is not asymptomatic from the patient's side: upper-right abdominal pain (14/23), fatigue (18/23), poor sleep quality (12/23), impaired memory (13/23), reduced focus (11/23), with impacts on physical functioning, daily tasks, relationship quality, mood, anxiety and self-consciousness
Ley 2022, PMID 35442241 Focus groups with 16 adolescents (mean age 15.8, mean BMI 37) plus caregiver-reported measures Reactions to diagnosis ranged from unconcerned to anxious; comprehension of the diagnosis varied; the diagnosis was not perceived to affect most adolescents' daily lives. 62.5% were more concerned about their weight than about NAFLD, and 43.8% identified as food insecure
Fouad 2025, PMID 40337974 Semi-structured written questionnaire, 222 patients with fatty liver disease 79.7% did not consider "fatty" stigmatising, while 85.1% said including "alcohol" in a condition's name carries stigma. Awareness was very low: only 37.8% knew cirrhosis could result, 16.7% knew HCC could; 71.9% did not know how the disease is diagnosed and 81.1% did not know how it is treated; 65.8% wanted to know more
Avery 2017, PMID 28624648 Qualitative study of lifestyle behaviour change in NAFLD clinical practice —
Alem 2021, PMID 33497764 Real-time patient feedback on the NAFLD→MAFLD change —
Berg 2026, PMID 42525136 Lived experience of MASLD and diabetes —
Shea Wynyard 2026, PMID 42651339 Semi-structured interviews with 25 adults with MASLD, aged 24–79 Incidental diagnosis and unclear communication, information seeking, symptom and relationship effects, stigma, lifestyle burden, progression anxiety, and need for information and follow-up support
Yang 2026, PMID 42529177 Qualitative interviews with 16 postmenopausal patients with MASLD in Nanjing, China Risk awareness, menopause-related burdens, support gaps, emotional/self-management challenges and motivation for active health management

Three findings converge and matter more than the naming debate. The disease is not experienced as silent: fatigue, abdominal pain, poor sleep and cognitive complaints are consistently elicited when patients are asked directly (PMID 33336323), which contradicts the standard clinical description of asymptomatic early disease. The diagnosis is preceded by misdiagnosis and followed by an information vacuum (PMID 38780312). And patients rank their weight above their liver as a concern — 62.5% of adolescents (PMID 35442241), echoing the adult finding that stigma attaches three times more often to overweight than to the liver diagnosis (PMID 37984709).

The Fouad survey is the most direct challenge to the rename's rationale: in 222 patients, "fatty" was not perceived as stigmatising by four in five, while "alcohol" in a disease name was by more than four in five — and the authors conclude that the change to MASLD "does not seem warranted, at least if the stigma is the main concern". That is a minority position stated against a multisociety consensus, in a single-centre cross-sectional survey, and it is recorded here because the evidence base on this specific question is thin enough that a dissenting empirical result carries weight.

What is still missing. No longitudinal study of the diagnosis journey; no study of patient experience before and after the nomenclature change; and no interview-based work on how patients understand non-invasive test results or treatment thresholds. The 2026 Nanjing study removes the prior claim that interview evidence was confined to high-income settings, but geographic coverage remains very sparse.

Open questions

  • Did the rename change patient experience? The stigma rationale rested on panellist perception (PMID 37363821); the patient survey found 8% reporting liver-disease stigma against 26% reporting weight stigma (PMID 37984709). No before-and-after study of patient-experienced stigma across the nomenclature change has been done, and the survey predates widespread adoption of the new term.
  • Should the target of anti-stigma work be the liver name or body weight? Patients attribute three times more stigma to weight than to the liver diagnosis (PMID 37984709), yet the field's principal anti-stigma intervention was a liver-disease rename.
  • Why do public-facing health portals still use NAFLD? Both verified government pages retained the old terminology on 2026-09-02, three years after the multisociety statement. No study has examined the lag between professional and public terminology or its effect on patients searching for information.
  • How long is the diagnostic delay, and how often is MASH misdiagnosed first? Interview data describe "a long process of misdiagnoses" before diagnosis (PMID 38780312) in 28 patients; no cohort study has quantified the delay or the misdiagnoses.
  • Is early MASLD actually asymptomatic? Clinical descriptions say yes; concept-elicitation interviews elicit fatigue in 18 of 23, abdominal pain in 14 and cognitive complaints in 11–13 (PMID 33336323), and independent HRQL work finds the impairment concentrated in fatigue, physical function and work productivity (PMID 37024220). The two accounts have never been reconciled, and the resolution matters for whether patient-reported outcomes belong in trials.
  • How should cognitive dysfunction in MASLD be measured? No agreed test exists, no correlation between MASLD stage and severity of impairment has been established, and no MASLD therapy has been evaluated for cognitive effect (Mikkelsen 2025, PMID 39701123) — while patients report memory and concentration problems unprompted (PMID 33336323). This is the clearest case in this condition of a patient-reported symptom with no measurement instrument.
  • Does depression cause MASLD or follow it? Observational pooling gives OR 1.14 (1.05–1.24) for incident NAFLD after depression; Mendelian randomisation in the same study finds no causal effect (OR 0.861, 0.598–1.238) (PMID 38387674). The discrepancy is unresolved, and it determines whether mood is a target or a marker.
  • Do patient-reported outcomes belong in registration trials? Called a blind spot in 2023 (PMID 36536958); MAESTRO-NASH included HRQL instruments and found responder-associated improvement (PMID 39250515), but no regulatory endpoint in this disease is patient-reported.

References

  1. Younossi ZM, Alqahtani SA, Alswat K, et al. Global survey of stigma among physicians and patients with nonalcoholic fatty liver disease. J Hepatol. 2024;80(3):419-430. PMID 37984709
  2. Younossi ZM, Stepanova M, Racila A, et al. Health-related quality of life (HRQL) assessments in a 52-week, double-blind, randomized, placebo-controlled phase III study of resmetirom (MGL-3196) in patients with metabolic dysfunction-associated steatohepatitis (MASH) and fibrosis. Hepatology. 2025;81(4):1318-1327. PMID 39250515
  3. Sena E, Manzano-Nunez R, Rivera-Esteban J, et al. Patient-reported outcomes in NAFLD/NASH clinical trials: A blind spot that needs addressing. JHEP Rep. 2023;5(1):100597. PMID 36536958
  4. Shea Wynyard S, et al. Lived Experience, Concerns, and Support Needs of Adults with MASLD: A Qualitative Study. Healthcare (Basel). 2026;14(16):2569. PMID 42651339
  5. Yang Y, et al. A qualitative study on the self-management experience and needs of postmenopausal patients with MASLD from the perspective of active health. Front Public Health. 2026;14:1828862. PMID 42529177
  6. Younossi ZM, Henry L, Stepanova M. Measuring health-related quality of life and patient-reported outcomes in chronic liver disease. J Hepatol. 2026;84(2):457-472. PMID 41072803
  7. Younossi ZM. Chronic liver disease and health-related quality of life [editorial]. Gastroenterology. 2001;120(1):305-7. PMID 11208742
  8. Lazarus JV, Mark HE, Anstee QM, et al. Advancing the global public health agenda for NAFLD: a consensus statement. Nat Rev Gastroenterol Hepatol. 2022;19(1):60-78. PMID 34707258
  9. Duell PB, Welty FK, Miller M, et al. Nonalcoholic Fatty Liver Disease and Cardiovascular Risk: A Scientific Statement From the American Heart Association. Arterioscler Thromb Vasc Biol. 2022;42(6):e168-e185. PMID 35418240
  10. Rinella ME, Lazarus JV, Ratziu V, et al. A multisociety Delphi consensus statement on new fatty liver disease nomenclature. Hepatology. 2023;78(6):1966-1986. PMID 37363821
  11. Stine JG, Medic N, Pettersson B, et al. The health care experience of adults with metabolic dysfunction-associated steatohepatitis and influence of PNPLA3: A qualitative study. Hepatol Commun. 2024;8(6). PMID 38780312
  12. Doward LC, Balp MM, Twiss J, et al. Development of a Patient-Reported Outcome Measure for Non-Alcoholic Steatohepatitis (NASH-CHECK): Results of a Qualitative Study. Patient. 2021;14(5):533-543. PMID 33336323
  13. Ley SL, Kidwell KM, Van Dyk TR, et al. Insight Into the Adolescent Patient Experience With Nonalcoholic Fatty Liver Disease. J Pediatr Gastroenterol Nutr. 2022;75(1):88-96. PMID 35442241
  14. Fouad Y, Mostafa AM, Pan Z, et al. Evaluation of Stigma Toward Fatty Liver Disease. Endocr Metab Immune Disord Drug Targets. 2025. PMID 40337974
  15. Avery L, Exley C, McPherson S, et al. Lifestyle Behavior Change in Patients With Nonalcoholic Fatty Liver Disease: A Qualitative Study of Clinical Practice. Clin Gastroenterol Hepatol. 2017;15(12):1968-1971. PMID 28624648
  16. Alem SA, Gaber Y, Abdalla M, et al. Capturing patient experience: A qualitative study of change from NAFLD to MAFLD real-time feedback. J Hepatol. 2021;74(5):1261-1262. PMID 33497764
  17. Berg J, Cherry P, Cheung K, et al. Understanding MASLD and diabetes through lived experience. Diabetologia. 2026. PMID 42525136
  18. Stepanova M, Henry L, Younossi ZM. Economic Burden and Patient-Reported Outcomes of Nonalcoholic Fatty Liver Disease. Clin Liver Dis. 2023;27(2):483-513. PMID 37024220
  19. Mikkelsen ACD, Kjærgaard K, Schapira AHV, et al. The liver-brain axis in metabolic dysfunction-associated steatotic liver disease. Lancet Gastroenterol Hepatol. 2025;10(3):248-258. PMID 39701123
  20. Li S, Li S, Duan F, et al. Depression and NAFLD risk: A meta-analysis and Mendelian randomization study. J Affect Disord. 2024;352:379-385. PMID 38387674

Non-journal sources (all retrieved 2026-09-02):

  • Fatty Liver Foundation — "Fatty liver Foundation silent killers - NAFLD & NASH & Cirrhosis", https://www.fattyliverfoundation.org/, accessed 2026-09-02
  • Liver Canada — "Fatty Liver Disease", https://liver.ca/patients-caregivers/liver-diseases/fatty-liver-disease/, accessed 2026-09-02
  • Liver Foundation (Australia) — "Fatty Liver Disease", https://www.liver.org.au/your-liver/liver-diseases/fatty-liver-disease/, accessed 2026-09-02
  • Liver Foundation, West Bengal — "Home", https://www.liverfoundation.in/, accessed 2026-09-02
  • Liver Patients International — "Home", https://www.liverpatientsinternational.org/, accessed 2026-09-02
  • NHS — "Non-alcoholic fatty liver disease (NAFLD)", https://www.nhs.uk/conditions/non-alcoholic-fatty-liver-disease/, accessed 2026-09-02
  • NIDDK — "Nonalcoholic Fatty Liver Disease (NAFLD) & NASH", https://www.niddk.nih.gov/health-information/liver-disease/nafld-nash, accessed 2026-09-02