Development and validation of a polycystic liver disease complaint-specific assessment (POLCA) – Use of the Delphi technique for content validation

Trevisol, Daisson José; Silva, Alexandre da; Souza, Fabricio de; Zapelini, Clávison Martinelli

doi:10.1016/j.jhep.2014.11.043

Cited by 5 publications

(4 citation statements)

References 4 publications

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“…These differences might be explained by the lack of patient involvement in development of the POLCA, which limits content validity. (24,36) It is unclear whether absence of pretesting in patients has led to reduced comprehensibility of the POLCA, because the proportion of missing data is not provided. Finally, reproducibility of the POLCA was not tested.…”

Section: Discussionmentioning

confidence: 99%

Development and Validation of a Disease‐Specific Questionnaire to Assess Patient‐Reported Symptoms in Polycystic Liver Disease

et al. 2016

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Treatment 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 US (n=203) PLD patients. We assessed the correlation of PLD-Q total score with 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 two week retest scores. In total, 167 Dutch and 124 US patients returned the questionnaire. Correlation between PLD-Q total score and EORTC symptom scale (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 and US 0.96). Conclusion PLD-Q is a valid, reproducible and sensitive disease-specific questionnaire which can be used to assess PLD-related symptoms in clinical care and future research.

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Section: Discussionmentioning

confidence: 99%

Development and Validation of a Disease‐Specific Questionnaire to Assess Patient‐Reported Symptoms in Polycystic Liver Disease

et al. 2016

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“…Patients were involved in the development of PLD-Q, contrary to the development of POLCA, leading to a different set of items. POLCA was criticised because of its validation process, 41,42 as pretesting of the questionnaire in patients with symptomatic PLD had not been done. 40 However, both questionnaires can be used to score the burden of disease and to assess the changes in symptom burden after treatment.…”

Section: Pld-specific Questionnairesmentioning

confidence: 99%

Clinical management of polycystic liver disease

Aerts

Laarschot

Bañales

et al. 2018

Journal of Hepatology

129

209

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In this Grand Rounds article, we present a typical case of a woman with polycystic liver disease. This case prompts questions which both patients and clinicians may face in clinical practice. This article aims to provide guidance to clinicians caring for patients with polycystic liver disease, in relation to key recent developments in the field. We discuss the latest advances in our understanding of pathophysiology, the natural course of disease, complications, as well as existing and potential new treatment options.

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“…Compared to the nominal group technique, which includes face-to-face meetings, the Delphi technique allowed us to include experts from multiple centers in different countries as there are no geographical constraints. Moreover, the rating of items was done anonymously, thereby eliminating the possibility for experts to influence each other [24] .…”

Section: Discussionmentioning

confidence: 99%

International Multi-Specialty Delphi Survey: Identification of Diagnostic Criteria for Hepatic and Renal Cyst Infection

Lantinga

Darding

Sévaux

et al. 2016

Nephron

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Background: Cyst infection is one of the complications of autosomal dominant polycystic kidney disease and polycystic liver disease. The diagnosis is typically made on a mix of clinical, laboratory and imaging abnormalities but the importance of individual items is uncertain. We aimed to perform a Delphi survey amongst physicians to achieve consensus on diagnostic criteria. Methods: We retrieved diagnostic items from the literature and conducted physician and patient interviews. All items were combined to create the online questionnaire. Participants rated each item during 3 consecutive rounds. Items were rated for diagnostic helpfulness for hepatic and renal cyst infection on a 9-point scale with anchors, from extremely unimportant (n = 1) to extremely important (n = 9). We determined consensus with the disagreement index. The median rating of each item was calculated and categorized into inappropriate (≤3.4), uncertain (3.5-6.4) or appropriate (≥6.5). By combining all items that reached an appropriate consensus rating, we developed a diagnostic algorithm based on expert consensus. Results: We invited 58 physicians to participate in the survey. In total, 35 (60%) responded to round 1 of which 91% (n = 32) and 86% (n = 30) responded to round 2 and 3, respectively. The final panel included 23 nephrologists, 5 hepatologists, a nuclear medicine specialist and an infectious disease physician from 11 countries (male 67%, mean age 47 ± 11 years, median clinical experience 21 years). The panel rated the diagnostic helpfulness of 59 potential items. Ultimately, 22 hepatic and 26 renal items were rated appropriate, including positive blood cultures and fluorodeoxyglucose positron-emission CT imaging. Ultrasonography and absence of intracystic bleeding were amongst those deemed uncertain or inappropriate. Subsequently, by combining items rated appropriate, we developed a clinical tool to diagnose hepatic and renal cyst infection. Conclusions: We identified diagnostic items for hepatic and renal cyst infection and developed an expert-based diagnostic algorithm, which may aid physicians in the diagnostic work-up. A prospective study is necessary to validate this algorithm.

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Development and validation of a polycystic liver disease complaint-specific assessment (POLCA) – Use of the Delphi technique for content validation

Cited by 5 publications

References 4 publications

Development and Validation of a Disease‐Specific Questionnaire to Assess Patient‐Reported Symptoms in Polycystic Liver Disease

Development and Validation of a Disease‐Specific Questionnaire to Assess Patient‐Reported Symptoms in Polycystic Liver Disease

Clinical management of polycystic liver disease

International Multi-Specialty Delphi Survey: Identification of Diagnostic Criteria for Hepatic and Renal Cyst Infection

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