Publications
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Paller A, Siegfried E, Marron SE, Clark M, Harris N, Quin S, Chao J, Bansal A, Sun Y, Chuang C, Wang Z. Development and validation of a caregiver reported numeric rating scale for measuring skin pain in children aged 6 months to 5 years with atopic dermatitis. Poster presented at the 2022 Society for Investigative Dermatology (SID) Annual Meeting; May 19, 2022. Portland, OR. [abstract] J Invest Dermatol. 2022 Aug 1; 142(8 supplement):S42. doi: 10.1016/j.jid.2022.05.257
Haggerty A, Barrett A, Dine J, Martin L, Shah P, Buckingham T. Shared decision making in frontline maintenance therapy for ovarian cancer: a qualitative assessment. Poster presented at the 2022 Society of Gynecologic Oncology Annual Meeting; March 18, 2022. Phoenix, AZ. [abstract] Gynecol Oncol. 2022 Aug; 166(Supplement 1):S286. doi: 10.1016/S0090-8258(22)01810-8
Kamudoni P, Amtmann D, Johns J, Cook KF, Salem R, Salek S, Raab J, Middleton R, Repovic P, Alschuler KN, von Geldern G, Wundes A, Barrett A, Olayinka-Amao B, Henke C. The validity, responsiveness, and score interpretation of the PROMISnq Physical Function - Multiple Sclerosis 15a short form in multiple sclerosis. Mult Scler Relat Disord. 2022 Jun;62:103753. doi: 10.1016/j.msard.2022.103753
Pandya AG, Amoloja T, Bibeau K, DiBenedetti D, Kosa K, Butler K, Kornacki D, Ezzedine K. Assessing participants' experiences with vitiligo from qualitative interviews. Presented at Innovations in Dermatology; April 27, 2022. Scottsdale, AZ. Previously presented at the 2022 Global Vitiligo Foundation Annual Symposium.
Martin S, Shah SN, Hepp Z, Harris N, Morgans AK. Qualitative analysis of pain in patients with locally advanced or metastatic urothelial carcinoma. Bladder Cancer. 2022 Mar 11;8(1):45-53. doi: 10.3233/BLC-211518
Layton JB, Forns J, Turner ME, Dempsey C, Bartsch JL, Anthony MS, Danysh HE, Ritchey ME, Demos G. Falls and fractures in patients with Parkinson's Disease–related psychosis treated with Pimavanserin vs atypical antipsychotics: a cohort study. Drugs Real World Outcomes. 2022 Mar;9(1):9-22. doi: 10.1007/s40801-021-00284-1
Yee KS, Alexanderian D, Hamm L, Martin S, Olayinka-Amao B, Whiteman DAH. Clinical investigator perspectives on the effects of intrathecal idursulfase-IT treatment in children with neuronopathic mucopolysaccharidosis type II. Poster presented at the 2022 18th Annual World Symposium; February 7, 2022. San Diego, CA.
Pandya AG, Amoloja T, Bibeau K, DiBenedetti D, Kosa K, Butler K, Kornacki D, Ezzedine K. Assessing patients' experiences with vitiligo from qualitative interviews. Poster presented at the 2022 Virtual Maui Derm for Dermatologists; January 24, 2022. Maui, HI.
Martin SA, Meckley LM, Harris NI, Chen KS, Leffler DA. Symptom assessment in adolescents and adults with celiac disease. Poster presented at the Virtual ISPOR Europe 2021; December 1, 2021. [abstract] Value Health. 2021 Dec; 24(12):S2.
Lewis S, Wray SE, Evans E, Romano (DeMuro) C, Bartolome L, Su W, Shah R, Russo PA. Patients' experiences in transitioning to secondary progressive multiple sclerosis: qualitative interviews. Neurol Ther. 2021 Dec;10(2):887-904. doi: 10.1007/s40120-021-00265-0
Joly F, DasMahapatra P, Su J, DiBenedetti D, Kosa K, Hill Q. Development of a cold Agglutinin disease-specific patient-reported outcome symptom measure. Poster presented at the 2021 63rd American Society of Hematology (ASH) Annual Meeting & Exposition; December 13, 2021. [abstract] Blood. 2021 Nov 23; 138(supplement 1):4057. doi: 10.1182/blood-2021-147199
Clinch S, McDougall F, Barrett A, Olayinka-Amao B, Craveiro L, Baker M, Lindemann M. Understanding MS symptoms and impacts through semi-structured interviews with clinical experts and people living with MS. Poster presented at the 2021 CMSC Annual Meeting; October 25, 2021. Orlando, FL.
Clinch S, McDougall F, Barrett A, Olayinka-Amao B, Craveiro L, Baker M, Lindemann M. A patient-focused qualitative study to support content validity of digital performance assessments in MS. Poster presented at the 2021 ECTRIMS Annual Congress; October 13, 2021. [abstract] Mult Scler J Exp Transl Clin. 2021 Oct 21; 27(2 Suppl):329. doi: 10.1177/13524585211044667
Ervin C, Mangalindan A, Shapouri S, Sutphin J, Mansfield C, Manzoor BS, Sail K, Dine J. What drives treatment preferences in CLL? Listening to the patient voice. Poster presented at the 2021 Virtual iwCLL International Workshop; September 17, 2021.
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
English M, Stoykova M, Slota C, Doward L, Siddiqui E, Crawford R, DiBenedetti D. Qualitative study of the burden of vasomotor symptoms associated with menopause and content validity of two PROMIS sleep measures in menopausal women. Presented at the 2021 IMS Conference (Conference cancelled); February 4, 2021. Previously presented at the NAMS 2020 Virtual Meeting.
Forns J, Layton JB, Bartsch J, Turner ME, Dempsey C, Anthony M, Ritchey ME, Demos G. Increased risk of falls and fractures in patients with psychosis and Parkinson disease. PLoS One. 2021 Jan 27. doi: 10.1371/journal.pone.0246121
McIntyre RS, Patel MD, Masand PS, Harrington A, Gillard P, McElroy SL, Sullivan K, Montano CB, Brown TM, Nelson L, Jain R. The Rapid Mood Screener (RMS): a novel and pragmatic screener for bipolar I disorder. Curr Med Res Opin. 2021 Jan;37(1):135-44. doi: 10.1080/03007995.2020.1860358
Shah SN, Hepp Z, Martin S, Harris N, Morgans A. Qualitative analysis of pain in patients with locally advanced or metastatic urothelial cancer. Poster presented at the Virtual ISPOR Europe 2020 Conference; November 2020. [abstract] Value Health. 2020 Dec; 23(S2).
Sun SX, Olayinka-Amao O, DiBenedetti D. Assessing patient experiences with prophylactic treatments for hemophilia A: concept elicitation for gene therapy. Poster presented at the 62nd Annual Virtual Meeting of the American Society of Hematology (ASH); December 5, 2020. [abstract] Blood. 2020 Nov 5; 136(Suppl 1):33-4.
Su J, Kosa K, DiBenedetti D. Patient-reported disease burden: in-depth interviews of patients with CAD. Poster presented at the 2020 Virtual 62nd ASH Annual Meeting and Exposition; December 6, 2020. [abstract] Blood. 2020 Nov 5; 136(Suppl 1):29-30.
Starr HL, Abell J, Larish A, Lewis S, DeMuro C, Gogate J, Jamieson C, Daly E, Zaki N, Kramer M. Self-reported review of the value of esketamine in patients with treatment-resistant depression: understanding the patient experience in the STRIVE Study. Psychiatry Research. 2020 Nov;293:113376. doi: 10.1016/j.psychres.2020.113376
Cohen AD, Hari P, Htut M, Berdeja JG, Madduri D, Usmani SZ, Allred AJ, Olyslager Y, Banerjee A, Goldberg JD, Schecter JM, Jackson CC, Gries KS, Fastenau J, Deraedt W, Carrasco MJ, Akram M, Hossain F, Crawford R, Morrison R, Doward L, Jakubowiak A, Jagannath S. Patient expectations and perceptions of treatment in cartitude-1: phase 1b/2 study of ciltacabtagene autoleucel in relapsed/refractory multiple myeloma. Poster presented at the 62nd Annual Virtual Meeting of the American Society of Hematology (ASH); December 2020. [abstract] Blood. 2020 Nov; 136(Suppl 1):13-6. doi: 10.1182/blood-2020-136383
English M, Stoykova B, Slota C, Doward L, Siddiqui E, Crawford R, DiBenedetti D. Qualitative study of the burden of vasomotor symptoms associated with menopause and content validity of two PROMIS sleep measures in menopausal women. Poster presented at the NAMS 2020 Virtual Meeting; September 30, 2020.
Forns J, Layton JB, Bartsch J, Turner ME, Dempsey C, Anthony M, Ritchey ME, Demos G. Increased risk of falls and fractures in patients with psychosis and Parkinson disease. Poster presented at the 2020 36th ICPE International Virtual Conference on Pharmacoepidemiology & Therapeutic Risk Management; September 16, 2020.
Penner I-K, McDougall F, Brown TM, Slota C, Doward L, Julian L, Belachew S, Miller D. Exploring the impact of fatigue in progressive multiple sclerosis: a mixed-methods analysis. Mult Scler Relat Disord. 2020 Aug;43:102207. doi: 10.1016/j.msard.2020.102207
Aletaha D, Husni ME, Merola JF, Ranza R, Bertheussen H, Lippe R, Young P, Cappelleri JC, Brown TM, Ervin C, Hsu M-A, Fallon L. Treatment mode preferences in psoriatic arthritis: a qualitative multi-country study. Patient Prefer Adherence. 2020 Jun 8;2020(14):949-61. doi: 10.2147/PPA.S242336
Ervin C, Joish VN, Castro C, DiBenedetti D, Evans E, Carroll A, Lapuerta P. Elevating the patient voice in type 1 diabetes clinical trials: a comparison of in-depth exit interviews and diabetes-specific questionnaires. Poster presented at the 2020 Endocrine Society Conference (ENDO2020) (Conference cancelled); March 2020. San Francisco, CA. [abstract] J Endocr Soc. 2020 May 8; 4(Suppl 1):MON-630. doi: 10.1210/jendso/bvaa046.1290
Pariser DM, Simpson EL, Gadkari A, Bieber T, Margolis DJ, Brown M, Nelson L, Mahajan P, Reaney M, Guillemin I, Mallya UG, Eckert L. Evaluating patient-perceived control of atopic dermatitis: design, validation, and scoring of the Atopic Dermatitis Control Tool (ADCT). Curr Med Res Opin. 2020 Mar;36(3):367-76. doi: 10.1080/03007995.2019.1699516
Simpson E, Eckert L, Gadkari A, Mallya UG, Yang M, Nelson L, Brown M, Reaney M, Mahajan P, Guillemin I, Boguniewicz M, Pariser D. Validation of the Atopic Dermatitis Control Tool (ADCT©) using a longitudinal survey of biologic-treated patients with atopic dermatitis. BMC Dermatology. 2019 Nov 6;19(1):15. doi: 10.1186/s12895-019-0095-3
Ervin C, Joish VN, Evans E, DiBenedetti D, Reaney M, Preblick R, Castro R, Danne T, Buse JB, Lapuerta P. Insights into patients' experience with Type 1 diabetes: exit interviews from phase III studies of sotagliflozin. Clin Ther. 2019 Nov;41(11):2219-2230. doi: 10.1016/j.clinthera.2019.09.003
Weiss C, Meehan S, Brown TM, Gupta C, DiBenedetti D, Thase M, McIntyre R, Ismail Z. Exploring patient experiences taking adjunctive brexpiprazole for major depressive disorder (MDD): post-hoc analysis of exit interview data. Poster presented at the 2019 32nd Annual Psychiatric & Mental Health Congress; October 2019. San Diego, CA.
Lewis S, Romano C, De Bruecker G, Murrough JW, Shelton R, Singh JB, Jamieson C. Analysis of clinical trial exit interview data in patients with treatment-resistant depression. Patient. 2019 Oct;12(5):527-37. doi: 10.1007/s40271-019-00369-8
Nance RM, Vannappagari V, Smith K, Johannes CB, Calingaert B, Saltus CW, Mayer KH, Whitney BM, Rodriguez B, Moore RD, Eron JJ, Geng E, Mathews WC, Mugavero MJ, Saag MS, Kitahata MM, Delaney JAC, Crane HM. Virologic failure among people living with HIV initiating dolutegravir-based versus other recommended regimens in real-world clinical care settings. J Acquir Immune Defic Syndr. 2019 Aug 15;81(5):572-7. doi: 10.1097/QAI.0000000000002075
Martin S, Chen K, Harris N, Vera-Llonch M, Krasner A. Development of a patient-reported outcome measure for chronic hypoparathyroidism. Adv Ther. 2019 Aug;36(8):1999-2009. doi: 10.1007/s12325-019-00999-2
Crawford R, Doward L, Conroy R, Saretsky T, Sinha A. Living with congenital cytomegalovirus: a conceptual model of impact for patients and caregivers. Poster presented at the 2019 Pediatric Academic Societies (PAS) Meeting; April 28, 2019. Baltimore, MD.
DiBenedetti D, Tzivelekis S, Meckley L. Humanistic cost impacts associated with immunoglobulin replacement therapy among patients with primary immunodeficiency disease in the United States. Poster presented at the 2019 AMCP Managed Care & Specialty Pharmacy Annual Meeting; March 25, 2019. San Diego, CA. [abstract] J Manag Care Pharm. 2019 Mar; 25(3-a Suppl):S37.
Kreher N, Phillips D, Fehnel S, Brown M. Evaluating the content validity of the Diary of Irritable Bowel Syndrome Symptoms – Mixed (DIBSS-M) to assess gastrointestinal symptoms associated with Fabry disease. Poster presented at the 16th Annual WORLDSymposium; February 11, 2019. Orlando, FL. [abstract] Mol Genet Metab. 2019 Feb; 126(2):S87. doi: 10.1016/j.ymgme.2018.12.215
Lapuerta P, Joish V, Ervin C, Evans E, Reaney M, Preblick R, De Fanti B, Castro R, DiBenedetti D. Patients with type 1 diabetes value increased glucose stability and associate it with improved well-being: exit interviews from Sotagliflozin Phase 3 study. Poster presented at the 2018 European Association for the Study of Diabetes (EASD) Conference; October 2, 2018. Berlin, Germany.
Brain C, Kymes S, DiBenedetti DB, Brevig T, Velligan DI. Experiences, attitudes, and perceptions of caregivers of individuals with treatment-resistant schizophrenia: a qualitative study. BMC Psychiatry. 2018 Aug 13;18(1):253. doi: 10.1186/s12888-018-1833-5
Carrigan G, Whipple S, Capra WB, Taylor MD, Lu M, Arnieri B, Brown JS, Abernethy AP, Copping R, Rothman KJ. Potential for using external control arms derived from electronic health records to replace control arms from randomized controlled trials. Poster presented at the 34th ICPE International Conference on Pharmacoepidemiology & Therapeutic Risk Management; August 26, 2018. Prague, Czech Republic. [abstract] Pharmacoepidemiol Drug Saf. 2018 Aug; 27(52):357. doi: 10.1002/pds.4629
Brain C, Kymes S, DiBenedetti D, Kelnaes AM, Brevig T, Velligan DL. Assessing experiences, attitudes, and perceptions associated with treatment-resistant schizophrenia (TRS): caregiver focus groups. Poster presented at the 2018 Annual Meeting of the American Psychiatric Association; May 8, 2018. New York, NY.
Martell B, DiBenedetti DB, Weiss H, Zhou X, Reynolds M, Berghella V, Hassan SS. Screening and treatment for short cervical length in pregnancy: a physician survey in the United States. Arch Gynecol Obstet. 2018 Mar;297(3):601-11. doi: 10.1007/s00404-017-4619-y
Doward L, Svedsater H, Whalley D, Crawford R, Leather D, Lay-Flurrie J, Bosanquet N. Salford Lung Study in chronic obstructive pulmonary disease (SLS COPD): follow-up interviews on patient-centred outcomes. NPJ Prim Care Respir Med. 2017 Dec 15;27(1):66. doi: 10.1038/s41533-017-0066-2
Ervin CM, Reasner DS, Hanlon JT, Fehnel SE. Exploring the diabetic gastroparesis patient experience: patient exit interviews. Adv Ther. 2017 Dec;34(12):2680-92. doi: 10.1007/s12325-017-0632-6
Anthony L, Ervin C, Lapuerta P, Kulke MH, Kunz P, Bergsland E, Horsch D, Metz DC, Pasieka J, Pavlakis N, Pavel M, Caplin M, Oberg K, Ramage J, Evans E, Yang QM, Jackson S, Arnold K, Law L, DiBenedetti DB. Understanding the patient experience with carcinoid syndrome: exit interviews from a randomized, placebo-controlled study of telotristat ethyl. Clin Ther. 2017 Nov 11;39(11):2158-68. doi: 10.1016/j.clinthera.2017.09.013
Nance R, Vannappagari V, Johannes C, Calingaert B, Saltus C, Boswell S, Rodriguez B, Moore R, Eron J, Geng E, Mathews WC, Saag MS, Kitahata M, Delaney JAC, Crane HM, Centers For AIDS Research Network of Integrated Clinical Systems (CNICS). Viral failure among persons living with HIV initiating dolutegravir-based vs. other recommended regimens in real-world clinical care settings. Poster presented at the IDWeek 2017 Conference; October 2017. San Diego, CA. [abstract] Open Forum Infect Dis. 2017 Oct 4; 4((Suppl 1)):S39. doi: 10.1093/ofid/ofx162.095
Martin S, Pawer V, Harris N, Gnanasakthy A. Symptoms of gastric cancer from a patient perspective. Poster presented at the ESMO 19th World Congress on Gastrointestinal Cancer; June 28, 2017. Barcelona, Spain. [abstract] Ann Oncol. 2017 Jun; 28(Suppl 3).
Herman BK, Deal LS, Kando JC, DiBenedetti DB, Nelson L, Fehnel SE, Brown TM. The use and value of the 7-item binge eating disorder screener in clinical practice. Prim Care Companion CNS Disord. 2017 Jun;19(3):16m02075.
Svedsater H, Doward L, Whalley D, Crawford R, Leather D, Lay-Flurrie J, Bosanquet N. Salford Lung Study in Chronic Obstructive Pulmonary Disease (SLS COPD): follow-up interviews on patient-centered outcomes. Poster presented at the 2017 ISPOR 22nd Annual International Meeting; May 23, 2017. Boston, MA. [abstract] Value Health. 2017 May; 20(5):A205.