Publications

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Displaying 1 through 47 of 47 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

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

Rebordosa C, Plana E, Rubino A, Aguado J, Martinez D, Lei A, Daoud S, Saigi-Morgui N, Perez-Gutthann S, Rivero-Ferrer E. Risk assessment of acute myocardial infarction and stroke associated with long-acting muscarinic antagonists, alone or in combination, versus long-acting beta2-agonists. Int J Chron Obstruct Pulmon Dis. 2022 Aug 2;17:1715-33. doi: 10.2147/COPD.S363997

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

Alvarez-Martin C, Ribera A, Marsal JR, Ariza-Sole A, Perez-Hoyos S, Oristrell G, Soriano-Colome T, Romaguera R, Pijoan JI, Lidon RM, Mauri J, Ferreira-Gonzalez I. Dynamics of emergency cardiovascular hospital admissions and in-hospital mortality during the COVID-19 pandemic: time series analysis and impact of socioeconomic factors. Front. Cardiovasc. Med. 2022 Apr 26. doi: 10.3389/fcvm.2022.827212

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

Rebordosa C, Plana E, Rubino A, Aguado J, Lei A, Daoud S, Saigi-Morgui N, Perez-Gutthann S, Rivero-Ferrer E. A cohort study to evaluate the risk of hospitalisation for congestive heart failure associated with the use of aclidinium and other chronic obstructive pulmonary disease medications in the UK Clinical Practice Research Datalink. Int J Chron Obstruct Pulmon Dis. 2021 May 31;16:1461-75. doi: 10.2147/COPD.S301624

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

Naranjo L, Torres-Duque CA, Colodenco D, Lopardo G, Rodriguez P, Agra de Albuquerque-Neto A, Hernandez-Zenteno RJ, Septien L, Chandler R, Ortega-Barria E, Juliao P, Guzman-Holst A. Highlights of an expert advisory board on Acute Exacerbations of Chronic Obstructive Pulmonary Disease (AE-COPD) in Latin America. Int J Chron Obstruct Pulmon Dis. 2020 Aug 6;15:1919-29. doi: 10.2147/COPD.S261258

Rudzik F, Thiesse L, Pieren R, Heritier H, Eze IC, Foraster M, Vienneau D, Brink M, Wunderli JM, Probst-Hensch N, Roosli M, Fulda S, Cajochen C. Ultradian modulation of cortical arousals during sleep: effects of age and exposure to nighttime transportation noise. Sleep. 2020 Jul 13;43(7):zsz324. doi: 10.1093/sleep/zsz324

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

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

Mansfield C, Sutphin J, Shriner K, Criner GJ, Celli BR. Patient preferences for endobronchial valve treatment of severe emphysema. Int J Chron Obstruct Pulmon Dis. 2019;6(1). doi: 10.15326/jcopdf.6.1.2018.0147

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

Rudzik F, Thiesse L, Pieren R, Wunderli JM, Brink M, Foraster M, Heritier H, Eze IC, Garbazza C, Vienneau D, Probst-Hensch N, Roosli M, Cajochen C. Sleep spindle characteristics and arousability from nighttime transportation noise exposure in healthy young and older individuals. Sleep. 2018 Jul 1;41(7). doi: 10.1093/sleep/zsy077

Donohue IF, Bollu VK, Stull DE, Nelson LM, Williams VS, Stensland MD, Hanania NA. Long-term health-related quality-of-life and symptom response profiles with arformoterol in COPD: results from a 52-week trial. Int J Chron Obstruct Pulmon Dis. 2018 Feb 5;13:499-508.

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

Tkatch R, Bazarko D, Musich S, Wu L, MacLeod S, Keown K, Hawkins K, Wicker E. A pilot online mindfulness intervention to decrease caregiver burden and improve psychological well-being. J Evid Based Complementary Altern Med. 2017 Oct;22(4):736-43. doi: 10.1177/2156587217737204

Wilson MR, Patel JG, Coleman A, McDade CL, Stanford RH, Earnshaw SR. Cost-effectiveness analysis of umeclidinium/vilanterol for the management of patients with moderate to very severe COPD using an economic model. Int J Chron Obstruct Pulmon Dis. 2017 Mar 24;2017(12):997-1008.

Schwab P, Dhamane AD, Hopson SD, Moretz C, Annavarapu S, Burslem K, Renda A, Kaila S. Impact of comorbid conditions in COPD patients on health care resource utilization and costs in a predominantly Medicare population. Int J Chron Obstruct Pulmon Dis. 2017 Feb 23;12:735-44. doi: 10.2147/COPD.S112256

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

Dhamane AD, Schwab P, Hopson S, Moretz C, Annavarapu S, Burslem K, Renda A, Kaila S. Association between adherence to medications for COPD and medications for other chronic conditions in COPD patients. Int J Chron Obstruct Pulmon Dis. 2016 Dec 22;12:115-22. doi: 10.2147/COPD.S114802

Marinelli M, Pappa I, Bustamante M, Bonilla C, Suarez A, Tiesler CM, Vilor-Tejedor N, Zafarmand MH, Alvarez-Pedrerol M, Andersson S, Bakermans-Kranenburg MJ, Estivill X, Evans DM, Flexeder C, Forns J, Gonzalez JR, Guxens M, Huss A, van IJzendoorn MH, Jaddoe VW, Julvez J, Lahti J, Lopez-Vicente M, Lopez-Espinosa MJ, Manz J, Mileva-Seitz VR, Perola M, Pesonen AK, Rivadeneira F, Salo PP, Shahand S, Schulz H, Standl M, Thiering E, Timpson NJ, Torrent M, Uitterlinden AG, Smith GD, Estarlich M, Heinrich J, Raikkonen K, Vrijkotte TG, Tiemeier H, Sunyer J. Heritability and genome-wide association analyses of sleep duration in children: the EAGLE consortium. Sleep. 2016 Aug.

Diette GB, Dalal AA, D'Souza AO, Lunacsek O, Nagar SP. Treatment patterns of chronic obstructive pulmonary disease in employed adults in the United States. Int J Chron Obstruct Pulmon Dis. 2015 Feb 24;10:415-22.

Patel JG, Nagar SP, Dalal AA. Indirect costs in chronic obstructive pulmonary disease: a review of the economic burden on employers and individuals in the United States. Int J Chron Obstruct Pulmon Dis. 2014 Mar;19(9):289-300.

Rycroft CE, Heyes A, Lanza L, Becker K. Epidemiology of chronic obstructive pulmonary disease: a literature review. Int J Chron Obstruct Pulmon Dis. 2012 Jul 1;7:457-94.

Dalal AA, Demuro-Mercon C, Lewis S, Nelson L, Gilligan T, McLeod L. Validation of alternate modes of administration of the lung function questionnaire (LFQ) in subjects with smoking history. Int J Chron Obstruct Pulmon Dis. 2010 Dec 1;5:425-34.

Martin S, Chandran A, Zografos L, Zlateva G, Sadosky A. Content validity of the sleep quality numeric rating scale (NRS) and the medical outcomes study sleep scale (MOS-sleep) in patients with fibromyalgia (Fm). Sleep. 2009 Jan 1;32(Suppl. S):A327.

Pearson J, Demuro-Mercon C, Cai B, Lewis S, Zhang J, Doghramji K, Ferguson J, Scharf M, Ware JC, Ball W. Electronic diaries improve precision of self-reported sleep data: a randomized comparison to paper diaries. Sleep. 2004 Jan 1;27(Suppl. S):371.