Publications

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Displaying 1 through 39 of 39 publications.

Tabberer M, Williamson N, Tatlock S, Gater A, Grimes R, Akinseye C, Neil D, Mahon-Smith A, Nelsen L. Qualitative interviews of patients with COPD and muscle weakness enrolled in a clinical trial evaluating a new anabolic treatment: patient perspectives of disease experience, trial participation and outcome assessments. J Patient Rep Outcomes. 2024 Apr 20;8(1):45. doi: 10.1186/s41687-024-00712-0

Davis S, Edwards T, Norcross L, Fehnel S, Beaudet A, Eckart M, Fastenau J. Use of the National Cancer Institute Patient-Reported Outcomes version of the common terminology criteria for adverse events to assess treatment tolerability in pulmonary arterial hypertension: qualitative patient research findings in current and former users of oral selexipag. J Patient Rep Outcomes. 2023 Dec 18;7(1):134. doi: 10.1186/s41687-023-00673-w.

Golden AH, Gabriel MH, Russo J, Price M, Ruhmel S, Nilsson A, Delong PS, Jelsma J, Carty M. Let's talk about it: an exploration of the comparative use of three different digital platforms to gather patient-reported outcome measures. J Patient Rep Outcomes. 2023 Dec 12;7(1):130. doi: 10.1186/s41687-023-00666-9

Williams V, Romano (DeMuro) C, Clark M, Korver D, Williams N, Goss D, Naujoks C, Marvel J. Psychometric evaluation of an electronic Asthma Symptom Diary for young children. J Patient Rep Outcomes. 2023 Oct 30;7(1):105. doi: 10.1186/s41687-023-00647-y

Martin S, Harris N, Romanus D. Evaluating meaningful changes in physical functioning and cognitive declines in metachromatic leukodystrophy: a caregiver interview study. J Patient Rep Outcomes. 2023 Jul 17;7(1):70. doi: 10.1186/s41687-023-00595-7

Twiss J, Whalley D, Doward L, Balp MM, Brass CA, Cryer D, Sanyal A, Anstee QM. Validation of NASH-CHECK: a novel patient-reported outcome measure for nonalcoholic steatohepatitis. J Patient Rep Outcomes. 2023 Jul 14;7(1):69. doi: 10.1186/s41687-023-00589-5

Osborne RH, Nelson L, Fehnel S, Williams N, Bender R, Ziemiecki R, Gymnopoulou E, De Paepe E, Vandendijck Y, Norcross L, Heijnen E, Ispas G, Comeaux C, Callendret B, Chan EKH, Scott JA. Evaluation of symptoms in respiratory syncytial virus infection in adults: psychometric evaluation of the respiratory infection intensity and impact questionnaire™ symptom scores. J Patient Rep Outcomes. 2023 Jun 1;7(1):51. doi: 10.1186/s41687-023-00593-9.

Chan EKH, Williams V, Romano C, Fehnel S, Slagle AF, Stoddard J, Sadoff J, Mayorga M, Lewis S, Yarr S, Ma J, Liu Y, Katz EG, McNulty P, van Dromme I, McQuarrie K. Psychometric evaluation of the symptoms of infection with coronavirus-19 (SIC): results from a cross-sectional study and a phase 3 clinical trial. J Patient Rep Outcomes. 2023 May 17;17(1):45. doi: 10.1186/s41687-023-00581-z

Davenport E, Zhou X, Wang J, Nunna S, Oberdhan D, Fernandes A, Mekahli D. Disease burden and disease progression of young adult patients with autosomal dominant polycystic kidney disease. Poster presented at the National Kidney Foundation 2023 Spring Clinical Meeting; April 11, 2023. Austin, TX. [abstract] Am J Kidney Dis. 2023 Apr 1; 81(4, Supple 1):S102. doi: 10.1053/j.ajkd.2023.01.349

Martin S, Bender R, Krasner A, Marmon T, Monahan M, Nelson L. Development and evaluation of the acromegaly symptom diary. J Patient Rep Outcomes. 2023 Feb 15;7(1):15. doi: 10.1186/s41687-023-00541-7

DeMuro (Romano) C, Mayorga M, Ruiz-Guinazu J, Trudel GC, Fehnel S, McQuarrie K, Chan EKH, Katz EG. Development of patient- and observer-reported outcome measures to assess COVID-19 signs and symptoms in children and adolescents. J Patient Rep Outcomes. 2023 Jan 26;7(1):7. doi: 10.1186/s41687-023-00542-6

Therrien F, Meehan SR, Weiss C, Dine J, Brown TM, MacKenzie EM. Exploring life engagement from the perspective of patients with major depressive disorder: a study using patient interviews. J Patient Rep Outcomes. 2022 Oct 12;6(1):111. doi: 10.1186/s41687-022-00517-z

Romano C, Fehnel S, Stoddard J, Sadoff J, Lewis S, McNulty P, Chan EKH, Evans E, Jamieson C, Slagle AF, Mangel A, McQuarrie K. Development of a novel patient‑reported outcome measure to assess signs and symptoms of COVID‑19. J Patient Rep Outcomes. 2022 Jul 29;6(1):85. doi: 10.1186/s41687-022-00471-w

Martin S, Shanchez RJ, Olayinka-Amao B, Harris C, Fehnel S. Qualitative interviews in patients with lipodystrophy to assess the patient experience: evaluation of hunger and other symptoms. J Patient Rep Outcomes. 2022 Jul 29.

Romano C, Harris N, Gnanasakthy A, D'Alessio D, Chandiwana D. Patient experiences with patient-reported outcome measures in metastatic breast cancer trials: qualitative interviews. J Patient Rep Outcomes. 2022 Jun 3;6(1):60. doi: 10.1186/s41687-022-00460-z

Clark M, Romano C, Olayinka-Amao O, Whalley D, Crawford R, Pathak P, Brindicci C, Garg K, Kordy K, Everhard F, Patalano F, Roesler Z, Sutton T, Goransson O, Landles R, Naujoks C, Marvel J, Keininger DL. Development and content validation of a self-completed, electronic Pediatric Asthma Symptom Diary. J Patient Rep Outcomes. 2022 Mar 20;6(1):25. doi: 10.1186/s41687-022-00432-3

Weiss C, Meehan SR, Brown TM, Gupta C, Morup MF, Thase ME, McIntyre RS, Ismail Z. Effects of adjunctive brexpiprazole on calmness and life engagement in major depressive disorder: post hoc analysis of patient-reported outcomes from clinical trial exit interviews. J Patient Rep Outcomes. 2021 Dec 11;5(1):128. doi: 10.1186/s41687-021-00380-4.

Darden C, Price M, Ray D, Goldstein G, Goss D, Bennett L, Garbinsky D, Thota R. Patients' satisfaction with long-acting injectable somatostatin analog therapy for neuroendocrine tumors. J Patient Rep Outcomes. 2021 Sep 7;5(1):82. doi: 10.1186/s41687-021-00355-5

Brod M, McLeod L, Markova D, Gianettoni J, Mourya S, Lin Z, Shu A, Smith A. Psychometric validation of the Hypoparathyroidism Patient Experience Scales (HPES). J Patient Rep Outcomes. 2021 Aug 10;5(1):70. doi: 10.1186/s41687-021-00320-2

English M, Stoykova B, Slota C, Doward L, Siddiqui E, Crawford R, DiBenedetti D. Qualitative study: burden of menopause-associated vasomotor symptoms (VMS) and validation of PROMIS sleep disturbance and sleep-related impairment measures for assessment of VMS impact on sleep. J Patient Rep Outcomes. 2021 Apr 26;5(1):37. doi: 10.1186/s41687-021-00289-y

Fastenau J, Rozjabek H, Qin S, McLeod L, Nelson L, Ma J, Harris N. Psychometric evaluation of the DAILY EATS questionnaire in individuals living with obesity. J Patient Rep Outcomes. 2020 Nov 23;4(1):99. doi: 10.1186/s41687-020-00259-w

DiBenedetti D, Soliman AM, Gupta C, Surrey ES. Patients' perspectives of endometriosis-related fatigue: qualitative interviews. J Patient Rep Outcomes. 2020 May 6;4(1):33. doi: 10.1186/s41687-020-00200-1

Zhou X, Davenport EK, Ouyang J, Krasa H, Garbinsky D, Agarwal I, Oberdhan D. Population characteristics across a pooled database of multiple Autosomal Dominant Polycystic Kidney Disease (ADPKD) clinical studies. Poster presented at the 2020 National Kidney Foundation Spring Clinical Meeting; March 2020. New Orleans, LA. [abstract] Am J Kidney Dis. 2020 Apr; 75(4):663.

Mader G, Purser M, Mladsi D, Sanon M, Oberdhan D, Watnick T, Seliger S. Benefit of tolvaptan on time to End-stage Renal Disease (ESRD) for patients with rapidly progressing Autosomal Dominant Polycystic Kidney Disease (ADPKD): a disease progression model. Poster presented at the 2020 National Kidney Foundation Spring Clinical Meeting; March 2020. New Orleans, LA. [abstract] Am J Kidney Dis. 2020 Apr; 75(4):603.

Butler AM, Layton JB, Dharnidharka VR, McGrath LJ. Correspondence: In reply to 'High-dose versus standard-dose influenza vaccine in hemodialysis patients'. Am J Kidney Dis. 2020 Mar;75(3):456-7. doi: 10.1053/j.ajkd.2019.11.002

Butler AM, Layton JB, Dharnidharka VR, Sahrmann J, Seamans MJ, Weber DJ, McGrath L. Comparative effectiveness of high-dose versus standard-dose influenza vaccine among patients receiving maintenance hemodialysis. Am J Kidney Dis. 2020 Jan;75(1):72-83. doi: 10.1053/j.ajkd.2019.05.018.

Nelson LM, DiBenedetti D, Pariser DM, Glaser DA, Hebert AA, Hofland H, Drew J, Ingolia D, Gillard KK, Fehnel S. Development and validation of the axillary sweating daily diary: a patient-reported outcome measure to assess axillary sweating severity. J Patient Rep Outcomes. 2019 Sep 5;3(1):59. doi: 10.1186/s41687-019-0148-8

Stover AM, McLeod L, Langer MM, Chen WH, Reeve BB. State of the psychometric methods: patient-reported outcome measure development and refinement using item response theory. J Patient Rep Outcomes. 2019 Jul 30;3(1):50. doi: 10.1186/s41687-019-0130-5.

Harrington M, Hareendran A, Skalicky A, Wilson H, Clark M, Mikl J. Assessing the impact on caregivers caring for patients with rare pediatric lysosomal storage diseases: development of the Caregiver Impact Questionnaire. J Patient Rep Outcomes. 2019 Jul 23;3(1):44. doi: 10.1186/s41687-019-0140-3

Lewis EF, Coles TM, Lewis S, Nelson LM, Barrett A, DeMuro Romano C, Stull DE, Turner SJ, Chang CG. Development, psychometric evaluation, and initial feasibility assessment of a symptom tracker for use by patients with heart failure (HFaST). J Patient Rep Outcomes. 2019 May 2;3(1):26. doi: 10.1186/s41687-019-0113-6

Lewis S, DeMuro C, Block SL, Senders S, Wisman P, Toback S, Chien JW, Williams V. Development of a novel observer-reported outcome measure for the assessment of Respiratory Syncytial Virus (RSV) infection symptoms in pediatric clinical trials. J Patient Rep Outcomes. 2018 Dec;2(9). doi: 10.1186/s41687-018-0034-9

Assimon MM, Brookhart MA, Fine JP, Heiss G, Layton JB, Flythe JE. A comparative study of carvedilol versus metoprolol initiation and 1-year mortality among individuals receiving maintenance hemodialysis. Am J Kidney Dis. 2018 Sep;72(3):337-48. doi: 10.1053/j.ajkd.2018.02.350.

Teixido C, Diez O, Marsal JR, Giner-Soriano M, Pera H, Martinez M, Galindo-Ortego G, Schoenenberger JA, Real J, Cruz I, Morros R. Efficacy and safety of topical application of 15% and 10% potassium hydroxide for the treatment of Molluscum contagiosum. Pediatr Dermatol. 2018 May;35(3):336-42. doi: 10.1111/pde.13438

Williams V, DeMuro C, Lewis S, Williams N, Wolynn T, Wisman P, Block SL, Senders S, Toback S, Chien JW. Psychometric evaluation of a caregiver diary for the assessment of symptoms of respiratory syncytial virus. J Patient Rep Outcomes. 2018;2(10). doi: 10.1186/s41687-018-0036-7

Brown TM, Martin S, Fehnel SE, Deal LS. Development of the impact of juvenile metachromatic leukodystrophy on physical activities scale. J Patient Rep Outcomes. 2017;2(1):15. doi: 10.1186/s41687-018-0041-x

Bradbury BD, Brookhart MA, Winkelmayer WC, Critchlow CW, Kilpatrick RD, Joffe MM, Feldman HI, Acquavella JF, Wang OH, Rothman KJ. Evolving statistical methods to facilitate evaluation of the causal association between erythropoiesis-stimulating agent dose and mortality in non-experimental research: strengths and limitations. Am J Kidney Dis. 2009 Sep 1;54(3):554-60.

Bradbury BD, Wang O, Critchlow CW, Rothman KJ, Heagerty P, Keen M, Acquavella JF. Relative mortality and epoetin alfa dose in hemodialysis patients - Reply. Am J Kidney Dis. 2008 May 1;51(5):865-6.

Bradbury BD, Wang O, Critchlow CW, Rothman KJ, Heagerty P, Keen M, Acquavella JF. Exploring relative mortality and epoetin alfa dose among hemodialysis patients. Am J Kidney Dis. 2008 Jan 1;51(1):62-70.

Humphries SE, Cranston T, Allen M, Middleton-Price H, Fernandez MC, Senior V, Hawe E, Iversen A, Wray R, Crook MA, Wierzbicki AS. Mutational analysis in UK patients with a clinical diagnosis of familial hypercholesterolaemia: relationship with plasma lipid traits, heart disease risk and utility in relative tracing. J Mol Med (Berl). 2006;84(3):203-14.