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Publications
Yap C, Aiyegbusi OL, Alger E, Basch E, Bell J, Bhatnagar V, Cella D, Collis P, Dueck AC, Gilbert A, Gnanasakthy A, Greystoke A, Hansen AR, Kamudoni P, Kholmanskikh O, King-Kallimanis BL, Krumbolz H, Minchom A, O'Connor D, Petrie J, Piccinin C, Rantell KR, Rauz S, Retzer A, Rizk S, Wagner L, Sasseville M, Seymour LK, Weber HA, Wilson R, Calvert M, Peipert JD. Advancing patient-centric care: integrating patient reported outcomes for tolerability assessment in early phase clinical trials – insights from an expert virtual roundtable. EClinicalMedicine. 2024 Oct;76:102838. doi: 10.1016/j.eclinm.2024.102838
Romano (DeMuro) C, Bratlee-Whhitaker E, Hartry A, Mearns E, Taylor J, Taylor G, Callahan L, Monks D, Kremer I, Lappin D, Frangiosa T, Sangodkar S, Herring WL, Gnanasakthy K, Goss D, McLeod L, Edwards T, Poulos C, DiBenedetti D, Paulsen R. Measuring what matters most to people living with Alzheimer's disease and care partners: what matters most quantitative research development. Poster presented at the Alzheimer's Association International Conference (AAIC) 2024; July 31, 2024. Philadelphia, PA.
Clevenger C, Brubaker M, Jackson WC, Stroud J, Peschin S, Fehnel S, Brown TM, Bratlee-Whitaker E, Bucior I, Patel M, Grossberg G. Study protocol: quantitative evaluation of the Agitation in Alzheimer's screener for caregivers (AASC™), a novel tool for improving recognition of agitation in Alzheimer's dementia. Poster presented at the Alzheimer's Association International Conference (AAIC) 2024; July 28, 2024. Philadelphia, PA.
Kessler AS, Brown TM, Bratleey-Whitaker E, Arca M, Baass A, Baum SJ, Bergeron J, Gauget D, Grijalvo OM, Alexander VJ, Llonch MV, Fehnel S, Tsimikas S. Patient experience with familial chylomicronemia syndrome before and after olezarsen treatment: qualitative interviews with clinical trial participants. Poster presented at the PancreasFest 2024; July 25, 2024. Cincinnati, OH. Previously presented at the National Lipid Association Scientific Sessions 2024.
Norman K, Bettger J, Dong C, French A, Lake A, Tchuisseu YP, Repka S, Vasudeva K, Whitaker R. Perspectives of telehealth and the impact on equity in access to health care from community members and healthcare providers: a multimethod analysis. Poster presented at the Academy Health 2024 Annual Research Meeting; June 30, 2024. Baltimore, MD.
Norman K, Barton K, Boucher H, Collyar D, Doemberg S, King H, Lydon E, Miller J, Oakes M, Radar A, Ruffin F, Skalla L, Wang T-W. A systematic review of patient-reported health-related quality of life measurement in patients with acute bacterial skin and skin structure infection. Poster presented at the Academy Health 2024 Annual Research Meeting; June 30, 2024. Baltimore, MD.
Martin S, Kosa K, Podgrabinska S, Garg A, Oral EA, Yildirim Simsir I, Brown RJ, Ozen S, Pagovich O, Srinivasan D, Sanchez RJ. Qualitative interviews describing the patient experience of individuals with generalized lipodystrophy enrolled in a clinical trial of mibavademab. Poster presented at the Endocrine Society (ENDO) 2024; June 1, 2024. Boston, MA.
Roth CL, Shoemaker AH, Ervin C, Norcross L, Fehnel S, Huber C, Scimia C, Abuzzahab MJ. Patient- and caregiver-reported experiences of hunger, weight, and energy in acquired yypothalamic obesity before and during setmelanotide treatment. Poster presented at the Endocrine Society (ENDO) 2024; June 1, 2024. Boston, MA.
Potashman MH, Rudell K, Abetz-Webb L, Suminski N, Gold A, Doma R, Jarodia K, Buckley C, Ridley M, Lerner J, Mather J, Millichap J, Berg AT, L'Italien G. Understanding lived experiences with KCNQ2-development and epileptic encephalopathy (KCNQ2-DEE) - parent interviews. Poster presented at the Congress of the European Academy of Neurology (EAN); June 29, 2024. Helsinki, Finland. [abstract] Eur J Neurol. 2024 Jun; 31(Suppl 1):363.
Kessler AS, Brown TM, Bratlee-Whitaker E, Arca M, Baass A, Baum SJ, Bergeron J, Gaudet D, Grijalvo OM, Alexander VJ, Llonch MV, Fehnel S, Tsimikas S. Patient experience with familial chylomicronemia syndrome before and after olezarsen treatment: qualitative interviews with clinical trial participants. Poster presented at the National Lipid Association Scientific Sessions 2024; May 30, 2024. Las Vegas, NV.
Simpson EL, Eckert L, Gadkari A, Brown TM, Lio PA, Lockshin B, Nelson L, Fehnel SE, Mahajan P, Chao J, Nygardas M, Guillemin I. Evaluating the clinical utility of the Atopic Dermatitis Control Tool: measurement properties and agreement between patients' responses and clinicians' impressions of atopic dermatitis control. Br J Dermatol. 2024 May 17;190(6):917-9. doi: 10.1093/bjd/ljae056
Kimpel CC, Myer EA, Cupples A, Roman Jones J, Seidler KJ, Rick CK, Brown R, Rawlins C, Hadler R, Tsivitse E, Lawlor MAC, Ratcliff A, Holt NR, Callaway-Lane C, Godwin K, Ecker AH. Identifying barriers and facilitators to veterans affairs whole health integration using the updated consolidated framework for implementation research. J Healthc Qual. 2024 May;43(6):137-49. doi: 10.1097/JHQ.0000000000000419
Aiyegbusi OL, Cruz Rivera S, Roydhouse J, Kamudoni P, Alder Y, Anderson N, Baldwin RM, Bhatnagar V, Black J, Bottomley A, Brundage M, Cella D, Collis P, Davies EH, Denniston AK, Efficace F, Gardner A, Gnanasakthy A, Golub RM, Hughes SE, Jeyes F, Kern S, King-Kallimanis BL, Martin A, McMullan C, Mercieca-Bebber R, Monteiro J, Peipert JD, Quijano-Campos JC, Quinten C, Rantell KR, Regnault A, Sasseville M, Schougaard LMV, Sherafat-Kazemzadeh R, Snyder C, Stover AM, Verdi R, Wilson R, Calvert MJ. Recommendations to address respondent burden associated with patient-reported outcome assessment. Nat Med. 2024 Mar;30(3):650-9. doi: 10.1038/s41591-024-02827-9
Williams V, DeMuro Romano C, Finelli L, Qin S, Saretsky TL, Ma J, Lewis S, Phillips M, Osborne RH, Norquist JM. Psychometric evaluation of the respiratory syncytial virus infection, intensity and impact questionnaire (RSV-iiiQ) in adults. Health Qual Life Outcomes. 2024 Feb 20;22(1):19. doi: 10.1186/s12955-023-02174-2
Tam S, Neslund-Dudas C, Barrett AM, Barrow LCJ, Fridman I, Kinlaw AC, Puviindran P, Royce TJ, Smith AB, Stein JN, Wood WA, Lafata JE. The perceived usability of virtual visits among black adults' receiving oncology care: a qualitative analysis. Oncologist. 2024 Feb 2;29(2):e237-47. doi: 10.1093/oncolo/oyad260
Burke CA, Seidler KJ, Rethorn ZD, Hoenig H, Allen K, Tabriz AA, Norman K, Murphy-McMillan LK, Sharpe J, Joseph LM, Dietch JR, Kosinski AS, Cantrell S, Gierisch JM, Ear B, Gordon A, Goldstein KM. Interventions to improve long-term adherence to physical rehabilitation: a systematic review. J Geriatr Phys Ther. 2024 Jan 12. doi: 10.1519/JPT.0000000000000402
Malec L, Carcao M, Mathias M, Kragh N, Dumont J, Willemze A, Bystricka L, Wilson A, DiBenedetti D. Experiences with efanesoctocog alfa: exit interviews with caregivers of previously treated patients with hemophilia a from the XTEND-Kids phase 3 clinical trial. Presented at the 65th ASH Annual Meeting & Exposition 2023; December 10, 2023. San Diego, CA.