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MASLD — patient-voice source list (annotated)

Every source used in themes.md and organizations.md, annotated for what it contributes and what constrains it. PMIDs were verified against live PubMed queries on 2026-09-02; every non-journal source was retrieved directly on the same date.

Peer-reviewed: interview and focus-group studies

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 One-to-one interviews with 28 US adults diagnosed with MASH with fibrosis, deliberately enriched for PNPLA3 I148M carriers (n=10) and Hispanic patients (n=8) because both groups develop advanced disease more often. Patients were asked open-ended questions about experiences before, at and after diagnosis. Contributes: T1 (misdiagnosis before diagnosis), T2 (information vacuum), T7 (fear of progression, family impact), T9 (limited support-group access). Constraints: n=28, US-only, recruited through specialist care; subgroup comparisons on 8–10 people cannot support the frequency contrasts they report.

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 23 concept-elicitation and 20 cognitive-debriefing interviews with US patients with non-cirrhotic NASH, conducted to regulatory standards for PRO development, reducing a 52-item draft to 31 items. Contributes: T3 (the symptom cluster: fatigue 18/23, right-upper-quadrant pain 14/23, impaired memory 13/23, poor sleep 12/23, reduced focus 11/23), T7 (relationship quality, mood, anxiety, self-consciousness). Constraints: single US tertiary centre; industry-sponsored instrument development, so elicitation was oriented toward building a measure; concept elicitation is designed to surface symptoms and may over-represent them relative to an unprompted account.

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 Mixed-method focus groups with 16 adolescents (mean age 15.8, mean BMI 37) plus adolescent- and caregiver-completed measures of illness perception, quality of life and eating/activity behaviour. Contributes: T2 (variable comprehension), T4 (62.5% more concerned about weight than NAFLD), T9 (43.8% food insecure). Constraints: n=16; the only paediatric source in this layer; findings on food insecurity come from a single site and should not be generalised.

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 Qualitative study of how lifestyle behaviour change is handled in NAFLD clinical practice. Constraints: the PubMed record retrieved carries no abstract, so no findings are summarised in themes.md; listed for completeness and flagged for full-text retrieval at the next sweep.

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 Correspondence reporting real-time patient feedback on the NAFLD→MAFLD terminology change. Constraints: letter format, no abstract retrieved; recorded as a single-source observation only.

Berg J, Cherry P, Cheung K, et al. Understanding MASLD and diabetes through lived experience. Diabetologia. 2026. PMID 42525136 Letter on lived experience at the MASLD–diabetes intersection. Constraints: no abstract retrieved; recorded as a pointer for the next sweep.

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 Semi-structured interviews with 25 adults aged 24–79. Contributes: incidental diagnosis and unclear communication, information seeking, symptoms and relationship effects, stigma, lifestyle work, anxiety about progression, and demand for better information and follow-up support. Constraints: small diagnosed sample; cross-sectional rather than a longitudinal diagnosis journey.

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 Qualitative interviews with 16 postmenopausal patients in Nanjing, China. Contributes: risk awareness, menopause-related burdens, support gaps, emotional and self-management challenges, and motivation for active health management. Constraints: single-city, small, demographically narrow sample.

Peer-reviewed: surveys of patients and providers

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 The largest patient-experience dataset in this condition: a 68-item patient survey completed by 1,976 patients across 23 countries and a 41-item provider survey completed by 825 providers across 25 countries, run by the Global NASH Council. Contributes: T4 (26% weight stigma vs 8% liver-disease stigma), T5 (patient indifference to terminology vs provider concern), T8 (48% disclosure). Constraints: 51% of patients were from MENA and only 3% of providers from Europe, so the geographic weighting is uneven and the patient and provider samples are not matched; cross-sectional and conducted before widespread MASLD adoption, so it cannot measure the rename's effect.

Fouad Y, Mostafa AM, Pan Z, et al. Evaluation of Stigma Toward Fatty Liver Disease. Endocr Metab Immune Disord Drug Targets. 2025. PMID 40337974 Semi-structured written questionnaire completed by 222 patients with fatty liver disease, testing the stigma premise of the nomenclature change directly. Contributes: T2 (awareness: 71.9% did not know how it is diagnosed, 81.1% how it is treated, 37.8% knew cirrhosis could result, 16.7% HCC, 65.8% wanted to know more), T5 (79.7% did not find "fatty" stigmatising; 85.1% found "alcohol" in a disease name stigmatising). Constraints: single-centre cross-sectional; the conclusion that the MASLD change "does not seem warranted" is a minority position against a multisociety consensus and is recorded as such.

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 in patients with MASH and fibrosis. Hepatology. 2025;81(4):1318-1327. PMID 39250515 CLDQ-NAFLD and LDQOL administered within MAESTRO-NASH (n=966 ITT). Contributes: T4 and T7 (the Stigma domain improved +3.5, 39% meeting MCID, in histological responders; the Worry domain improved on drug overall). Constraints: the large improvements are in responders, which is not a randomised comparison; the overall drug-versus-placebo effect is small and confined to one domain.

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 Commentary establishing that PROs are systematically under-used as trial endpoints in this field. Constraints: commentary, not primary data.

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 Methodological review of HRQL and PRO measurement in chronic liver disease.

Younossi ZM. Chronic liver disease and health-related quality of life [editorial]. Gastroenterology. 2001;120(1):305-7. PMID 11208742 Included to date the question: quality of life in chronic liver disease was being raised more than two decades before PROs entered MASH trials.

Peer-reviewed: context for the patient-facing claims

Rinella ME, Lazarus JV, Ratziu V, et al. Hepatology. 2023;78(6):1966-1986. PMID 37363821 — the panellist stigma figures (61% "nonalcoholic", 66% "fatty") that the patient surveys are compared against.

Lazarus JV, Mark HE, Anstee QM, et al. Nat Rev Gastroenterol Hepatol. 2022;19(1):60-78. PMID 34707258 — the public-health consensus recording weak and fragmented system responses and near-total absence from non-communicable-disease policy. Contributes to T8.

Duell PB, Welty FK, Miller M, et al. Arterioscler Thromb Vasc Biol. 2022;42(6):e168-e185. PMID 35418240 — AHA statement; source for the claim that most patients are unaware they have the condition. Contributes to T1.

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

Source URL Contributes to
Liver Foundation (Australia) — "Fatty Liver Disease" https://www.liver.org.au/your-liver/liver-diseases/fatty-liver-disease/ T1, T6. Publishes patient video transcripts; the richest verified non-journal patient-experience material in this sweep. Themes only were extracted; no identifying detail carried across
Liver Canada — "Fatty Liver Disease" https://liver.ca/patients-caregivers/liver-diseases/fatty-liver-disease/ T3, T6. Uses MASLD/MASH terminology with mapping to old names
NHS — "Non-alcoholic fatty liver disease (NAFLD)" https://www.nhs.uk/conditions/non-alcoholic-fatty-liver-disease/ T1, T3, T6
NIDDK — "Nonalcoholic Fatty Liver Disease (NAFLD) & NASH" https://www.niddk.nih.gov/health-information/liver-disease/nafld-nash Terminology adoption; the outdated "no medicines have been approved" statement (last reviewed April 2021)
Fatty Liver Foundation https://www.fattyliverfoundation.org/ Organisational advocacy for elastography screening
Global Liver Institute https://www.globalliver.org/ T9. "Beyond the Biopsy", "Liver Health is Public Health", Veterans Health programmes
Liver UK (formerly British Liver Trust) https://britishlivertrust.org.uk/ Organisational directory
Liver Patients International https://www.liverpatientsinternational.org/ Organisational directory; global umbrella body
Liver Foundation, West Bengal https://www.liverfoundation.in/ Organisational directory
ALEH https://www.alehlatam.org/ Organisational directory
EASL https://www.easl.eu/ Organisational directory
NICE guideline NG49 https://www.nice.org.uk/guidance/ng49 Terminology adoption
FDA press announcement https://www.fda.gov/news-events/press-announcements/fda-approves-first-treatment-patients-liver-scarring-due-fatty-liver-disease Regulatory context

Audit retrieval correction, 2026-09-02: American Liver Foundation returned HTTP 200 on retry. ELPA's former elpa-info.org address failed, but its current official domain, https://elpa.eu/, returned HTTP 200. Global Liver Institute also returned HTTP 200, and the British Liver Trust address redirected to Liver UK.

Coverage limits — read this before using anything above

  1. The literature is small. Six primary interview/focus-group studies with usable findings, two patient surveys, and two letter/commentary pointers were retrieved. For a disease affecting roughly a third of the world's adults, that is an extraordinarily thin first-person evidence base.

  2. Two search formulations gave opposite impressions. A broad search on stigma, quality of life, patient-reported outcomes and "qualitative" returned 1,168 records dominated by instrument work and initially suggested no interview literature existed. A targeted search on "qualitative study" OR "semi-structured interview" OR "focus group" OR "lived experience" OR "illness perception" returned 133 records and surfaced all the interview studies used here. The first conclusion was wrong and was corrected. Any future absence claim in this layer must be tested against both formulations.

  3. Geographic concentration. Interview evidence now includes a 16-person study from Nanjing, China, so it is not US-only. The two surveys are weighted to MENA (51% of patients in one) and to a single centre. Nothing was retrieved from sub-Saharan Africa or Latin America, and continental European coverage remains sparse.

  4. Everyone here has a diagnosis. The great majority of people with MASLD are undiagnosed. The experience of the undiagnosed majority is structurally unobtainable by these methods and is entirely absent.

  5. Nothing spans the nomenclature change. No source compares patient experience before and after June 2023, so the rename's stated rationale remains untested in the population it was intended to help.

  6. Industry involvement is present and disclosed. The NASH-CHECK development study and the MAESTRO-NASH HRQL analysis were both conducted within industry programmes; the Global NASH Council survey is a professional-society initiative. None is independent of the field's commercial structure, and none is thereby invalid.

  7. Non-journal sources are organisational communication, not evidence. Where an organisation states a prevalence figure, this layer records it as that organisation's public claim; the peer-reviewed estimates are in statistics/STATISTICS.md, and they do not always match.