Rachel Gomel

Fatigue and Cognitive Impairment in Adults With Primary Sclerosing Cholangitis: Results From Concept Elicitation Interviews

Nicole Lucas, Mark G. Swain, Donna M. Evon, Kaya Merkler et autres

BACKGROUND AND AIMS: To understand the experience of fatigue and cognitive impairment in adults with symptomatic primary sclerosing cholangitis (PSC) as an essential first step towards developing PSC-specific symptom measures. METHODS: Purposeful sampling was used to identify 17 symptomatic adults from the …

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Symptom burden is associated with health-related quality of life in symptomatic adults with primary sclerosing cholangitis

Kaya Merkler, Ricky Safer, Rachel Gomel, Christopher L. Bowlus et autres

BACKGROUND: The Primary Sclerosing Cholangitis Symptom Assessment Project (PSC-SAP) is a research initiative aimed at developing regulatory-grade PSC-specific symptom measures. During the initial screening phase for PSC-SAP, patient-reported symptom data were collected from a cohort of symptomatic adults. The current study aims …

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Symptom burden is associated with health-related quality of life in symptomatic adults with primary sclerosing cholangitis

Donna M. Evon, Kaya Merkler, Chelsea Anderson, Sasha Deutsch‐Link et autres

BACKGROUND: The Primary Sclerosing Cholangitis Symptom Assessment Project (PSC-SAP) is a research initiative aimed at developing regulatory-grade PSC-specific symptom measures. During the initial screening phase for PSC-SAP, patient-reported symptom data were collected from a cohort of symptomatic adults. The current study aims …

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Fatigue and Cognitive Impairment in Adults With Primary Sclerosing Cholangitis: Results From Concept Elicitation Interviews

Donna M. Evon, Kaya Merkler, Laura Mkumba, Nicole Lucas et autres

BACKGROUND AND AIMS: To understand the experience of fatigue and cognitive impairment in adults with symptomatic primary sclerosing cholangitis (PSC) as an essential first step towards developing PSC-specific symptom measures. METHODS: Purposeful sampling was used to identify 17 symptomatic adults from the …

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Co-creating discovery in basic science: Challenges and opportunities in patient-partnered research for rare liver disease

Diana Nakib, Mary Vyas, Rachel Gomel, Sonya MacParland

Background: Patient-partnered basic and translational research is the most productive and meaningful approach to developing informed research questions, generating high-quality data, and producing impactful work. While several organizations have published guidelines for patient-partnered research, few experiential reports in basic science are written …

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A multinational survey assessing the impact and burden of pruritus on patients with primary sclerosing cholangitis

Kris V. Kowdley, Ricky Safer, Rachel Gomel, Joanne Hatchett et autres

BACKGROUND: Pruritus is a common primary sclerosing cholangitis (PSC) symptom that greatly impacts quality of life (QoL; sleep, fatigue) and, in severe cases, may be an indication for liver transplantation. Currently, there are no effective pruritus treatments for PSC. This survey focuses …

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Caregiver‐reported symptom burden and preferences for therapeutic goals in pediatric primary sclerosing cholangitis

Holly P. Shifman, Joanne Hatchett, Ruth-Anne Langan Pai, Ricky Safer et autres

This study analyzed qualitative and quantitative survey responses from 51 pediatric primary sclerosing cholangitis (PSC) patients and caregivers using the PSC Partners Patient Registry-Our Voices survey. The most common symptoms reported by children/caregivers include: fatigue (71%), abdominal pain (69%), anxiety (59%), appetite …

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Patient-focused drug development in primary sclerosing cholangitis: Insights on patient priorities and involvement in clinical trials

Michael Li, Ruth-Anne Langan Pai, Rachel Gomel, Mary Vyas et autres

BACKGROUND: According to the new AASLD Practice Guidance, all patients with primary sclerosing cholangitis (PSC) should be considered for participation in clinical trials. However, PSC's rarity has posed challenges to characterizing patient interest in trial participation and identifying predictors of patient willingness …

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Tu1587 IMPACT OF PRURITUS IN PRIMARY SCLEROSING CHOLANGITIS (PSC) FROM THE PATIENT PERSPECTIVE: A MULTI-NATIONAL STUDY

Kris V. Kowdley, Ricky Safer, Rachel Gomel, Joanne Hatchett et autres

Impact of pruritus in primary sclerosing cholangitis (PSC): a multinational survey

Kris V. Kowdley, Ricky Safer, Rachel Gomel, Joanne Hatchett et autres

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A Systematic Review of Patient‐Reported Outcomes in Primary Biliary Cholangitis and Primary Sclerosing Cholangitis

Hannah P. Kim, Sarah R. Lieber, Michael E. Rogers, Andrew M. Moon et autres

Primary biliary cholangitis (PBC) and primary sclerosing cholangitis (PSC) are associated with decreased health‐related quality of life and debilitating symptoms. These experiences can be defined as patient‐reported outcome (PRO) concepts and measured using PRO instruments. We identified all PRO concepts and instruments …

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Characteristics and Outcomes Reported by Patients With Primary Sclerosing Cholangitis Through an Online Registry

Alexander Kuo, Rachel Gomel, Ricky Safer, Keith D. Lindor et autres

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