Publications by authors named "Susan D Mathias"

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Qualitative Research in Children and Parents of Children with Achondroplasia to Evaluate the Content Validity of Multiple Clinical Outcome Assessments.
Julie E Hoover-Fong, Ravi Savarirayan, Inês Alves, Chandler Crews, Amer Haider, Susan D Mathias

Adv Ther· November 2025

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The Burden of Erythropoietic Protoporphyria (EPP): Results From the EPP Life Impact and Genetic Health Trajectory (LIGHT) Study.
Hetanshi Naik, Manisha Balwani, Hilary H Colwell, Susan D Mathias, Kristen Wheeden

J Dermatol· October 2025

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Validation of the sunlight exposure diary and the erythropoietic protoporphyria impact questionnaire (EPIQ).
Hetanshi Naik, Susan D Mathias, Michelle P Turner, Megan O'Grady, Chelsea Norregaard

Orphanet J Rare Dis· September 2025

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Self-Reported Liver Disease and the Burden of Erythropoietic Protoporphyria.
Hetanshi Naik, Kristen Wheeden, Hilary H Colwell, Susan D Mathias, Chelsea Norregaard

JIMD Rep· May 2025

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Fatigue is distinct from sleepiness and negatively impacts individuals living with obstructive sleep apnea (OSA): results from qualitative research of individuals with OSA.
Helene A Emsellem, Hilary H Colwell, John Cronin, Ronald H Farkas, Susan D Mathias

Health Qual Life Outcomes· March 2025

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Qualitative and Psychometric Evaluation of 29-Item Patient-Reported Outcomes Measurement Information System® to Assess General Health-Related Quality of Life in Patients With Moderately to Severely Active Inflammatory Bowel Disease.
Bruce E Sands, Julian Panés, Brian G Feagan, Hongyan Zhang, Marion L Vetter, Susan D Mathias

Value Health· September 2024

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Development and Content Validation of Novel Patient-Reported Outcome Measures to Assess Disease Severity and Change in Patients with Erythropoietic Protoporphyria: The EPP Impact Questionnaire (EPIQ).
Susan D Mathias, Laurie Burke, Hilary H Colwell, George Mensing, Will Savage

Patient Relat Outcome Meas· February 2024

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Qualitative and psychometric evaluation of the PROMIS®-Fatigue SF-7a scale to assess fatigue in patients with moderately to severely active inflammatory bowel disease.
Brian G Feagan, William J Sandborn, Bruce E Sands, Yan Liu, Marion Vetter, Susan D Mathias

J Patient Rep Outcomes· November 2023

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Development and content validation of a sunlight exposure diary in patients with erythropoietic protoporphyria.
Susan D Mathias, Laurie Burke, Hilary H Colwell, George Mensing, Will Savage

J Patient Rep Outcomes· November 2023

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Development of a patient-reported outcome questionnaire to assess signs and symptoms of hidradenitis suppurativa: The Hidradenitis Suppurativa Symptom Diary.
Afsaneh Alavi, Sarah Baradaran, Susan D Mathias, Hilary H Colwell, Michael Song

J Am Acad Dermatol· May 2023

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Perceptions of patient disease burden and management approaches in systemic mastocytosis: Results of the TouchStone Healthcare Provider Survey.
Ruben A Mesa, Erin M Sullivan, David Dubinski, Brittany Carroll, Valerie M Slee, Susan D Mathias

Cancer· October 2022

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Patient-reported outcomes among patients with systemic mastocytosis in routine clinical practice: Results of the TouchStone SM Patient Survey.
Ruben A Mesa, Erin M Sullivan, David Dubinski, Brittany Carroll, Valerie M Slee, Susan D Mathias

Cancer· October 2022

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Disease and Treatment-Related Burden in Patients With Acromegaly Who Are Biochemically Controlled on Injectable Somatostatin Receptor Ligands.
Maria Fleseriu, Mark Molitch, Alexander Dreval, Nienke R Biermasz, Murray B Gordon, Susan D Mathias

Front Endocrinol (Lausanne)· December 2021

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Determination of thresholds for minimally important difference and clinically important response on the functional outcomes of sleep questionnaire short version in adults with narcolepsy or obstructive sleep apnea.
Terri E Weaver, Diane M Menno, Morgan Bron, Ross D Crosby, Susan Morris, Susan D Mathias

Sleep Breath· September 2021

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Evaluating the Content Validity, Clarity, and Relevance of Two Patient-Reported Outcomes for Use With Adults With -Mutated NSCLC.
Marcia K Horn, Kevin Liu, Susan D Mathias, Hilary H Colwell, Tracy Li

JTO Clin Res Rep· August 2021

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Relationship between sleep efficacy endpoints and measures of functional status and health-related quality of life in participants with narcolepsy or obstructive sleep apnea treated for excessive daytime sleepiness.
Terri E Weaver, Susan D Mathias, Ross D Crosby, Morgan Bron, Shay Bujanover

J Sleep Res· June 2021

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Long-term real-world experience with ipilimumab and non-ipilimumab therapies in advanced melanoma: the IMAGE study.
Stéphane Dalle, Laurent Mortier, Pippa Corrie, Michal Lotem, Ruth Board, Susan D Mathias

BMC Cancer· May 2021

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I-WISh: A wish list for immune thrombocytopenia quality of life indicators becomes reality.
Susan D Mathias

Am J Hematol· February 2021

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An evaluation of the Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ) in adult patients with acromegaly, including correlations with other patient-reported outcome measures: data from two large multicenter international studies.
Maria Fleseriu, Leon Fogelfeld, Murray B Gordon, Jill Sisco, Ross D Crosby, Susan D Mathias

Pituitary· August 2020

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Symptoms and impacts in anemia of chronic kidney disease.
Susan D Mathias, Steven I Blum, Vanja Sikirica, Kirsten L Johansen, Hilary H Colwell

J Patient Rep Outcomes· July 2020

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Patient reported outcome data from acromegaly patients treated with injectable somatostatin receptor ligands (SRLs) in routine clinical practice.
Eliza B Geer, Jill Sisco, Daphne T Adelman, William H Ludlam, Asi Haviv, Susan D Mathias

BMC Endocr Disord· July 2020

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Observed discordance between outcomes reported by acromegaly patients and their treating endocrinology medical provider.
Eliza B Geer, Jill Sisco, Daphne T Adelman, William H Ludlam, Asi Haviv, Susan D Mathias

Pituitary· April 2020

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Development of a novel patient-reported measure for acromegaly: the Acro-TSQ.
Maria Fleseriu, Leon Fogelfeld, Murray B Gordon, Jill Sisco, Hilary H Colwell, Susan D Mathias

Pituitary· December 2019

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Validity and responsiveness of the Urticaria Activity and Impact Measure: A new patient-reported tool.
Marcus Maurer, Susan D Mathias, Ross D Crosby, Yamina Rajput, James L Zazzali

Ann Allergy Asthma Immunol· June 2018

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Development of Focal Segmental Glomerulosclerosis Patient-Reported Outcome Measures: Symptom Diary and Symptom Impact Questionnaire.
Susan D Mathias, Susan Vallow, Debbie S Gipson, Kevin S Thorneloe, Dennis Sprecher

Am J Kidney Dis· October 2017

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