ArticleHepatology (Baltimore, Md.)2016
Development and Validation of a Disease-Specific Questionnaire to Assess Patient-Reported Symptoms in Polycystic Liver Disease.
Article in Hepatology (Baltimore, Md.), 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04645251 (Polycystic Liver Disease Registry), which is not on this map. Cited by 31 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Polycystic Liver Disease Registry (UK)
Who cites it
31 citing papers in PubMed, 3 syntheses or guidelines pooled it, 59 citations in OpenAlex.
- Medical Management of Polycystic Liver Disease: A Position Statement From the European Reference Network on Hepatological Diseases.Liver international : official journal of the International Association for the Study of the Liver · 2026Guideline
- Patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review.PloS one · 2021Pooled it
- Pooled it
- Pansomatostatin Agonist Pasireotide Long-Acting Release for Patients with Autosomal Dominant Polycystic Kidney or Liver Disease with Severe Liver Involvement: A Randomized Clinical Trial.Clinical journal of the American Society of Nephrology : CJASN · 2020Trial
- Symptom relief and not cyst reduction determines treatment success in aspiration sclerotherapy of hepatic cysts.European radiology · 2019Trial
- Pasireotide does not improve efficacy of aspiration sclerotherapy in patients with large hepatic cysts, a randomized controlled trial.European radiology · 2018Trial
- Healthcare burden and clinical spectrum of symptomatic polycystic liver disease in Japan: a nationwide epidemiological survey.Journal of gastroenterology · 2026Article
- The impact of nephrectomy on liver and contralateral kidney volume in patients with ADPKD; a case series.BMC nephrology · 2026Article
- Transplant Indications in Polycystic Liver and Kidney DiseaseThe Turkish journal of gastroenterology : the official journal of Turkish Society of Gastroenterology · 2026Review
- Foam sclerotherapy for symptomatic cysts in ADPKD, ADPLD and solitary cysts.Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association · 2025Observational
- Review
- Nephrectomy in autosomal dominant polycystic kidney disease: a consensus statement of the ERA Genes & Kidney Working Group.Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association · 2025Article
- Validating the SONG-PKD Pain Instrument, a Core Outcome Measure for Pain in ADPKD.Kidney international reports · 2025Article
- Efficacy and Related Factors of Ultrasound-guided Lauromacrogol Injection in Treating Symptomatic Hepatic Cysts with a Diameter of <10 cm: A Retrospective StudyCurrent medical imaging · 2025Article
- The Importance of Recognizing Pain in Patients With Autosomal Dominant Polycystic Kidney Disease.Kidney medicine · 2024Article
- Autosomal Dominant Polycystic Kidney Disease: Extrarenal Involvement.International journal of molecular sciences · 2024Review
- Questionnaire PLD-complaint-specific assessment identifies need for therapy in polycystic liver disease: A multi-centric prospective study.United European gastroenterology journal · 2023Observational
- Patient reported outcome measure thresholds: The next step in the management of polycystic liver disease.United European gastroenterology journal · 2023Article
- Modelling polycystic liver disease progression using age-adjusted liver volumes and targeted mutational analysis.JHEP reports : innovation in hepatology · 2022Article
- The Safety and Efficacy of Hepatic Transarterial Embolization Using Microspheres and Microcoils in Patients with Symptomatic Polycystic Liver Disease.Journal of personalized medicine · 2022Article
Corrections and comments
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Authors and funding
10 authors at 3 institutions in 2 countries.
Funding
Abstract
unlabelledTreatment of polycystic liver disease (PLD) focuses on symptom improvement. Generic questionnaires lack sensitivity to capture PLD-related symptoms, a prerequisite to determine effectiveness of therapy. We developed and validated a disease-specific questionnaire that assesses symptoms in PLD (PLD-Q). We identified 16 PLD-related symptoms (total score 0-100 points) by literature review and interviews with patients and clinicians. The developed PLD-Q was validated in Dutch (n = 200) and United States (US; n = 203) PLD patients. We assessed the correlation of PLD-Q total score with European Organization for Research and Treatment of Cancer (EORTC) symptom scale, global health visual analogue scale (VAS) of EQ-5D, and liver volume. To test discriminative validity, we compared PLD-Q total scores of patients with different PLD severity stages (Gigot classification) and PLD-Q total scores of PLD patients with general controls and polycystic kidney disease patients without PLD. Reproducibility was tested by comparing original test scores with 2-week retest scores. In total, 167 Dutch and 124 US patients returned the questionnaire. Correlation between PLD-Q total score and EORTC symptom scale (The Netherlands [NL], r = 0.788; US, r = 0.811) and global health VAS (NL, r = -0.517; US, r = -0.593) was good. There was no correlation of PLD-Q total score with liver volume (NL, r = 0.138; P = 0.236; US, r = 0.254; P = 0.052). Gigot type III individuals scored numerically higher than type II patients (NL, 46 vs. 40; P = 0.089; US, 48 vs. 36; P = 0.055). PLD patients scored higher on the PLD-Q total score than general controls (NL, 42 vs. 17; US, 40 vs. 13 points) and polycystic kidney disease patients without PLD (22 points). Reproducibility of PLD-Q was excellent (NL, r = 0.94; US, 0.96).
conclusionPLD-Q is a valid, reproducible, and sensitive disease-specific questionnaire that can be used to assess PLD-related symptoms in clinical care and future research. (Hepatology 2016;64:151-160).
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.