Publications

Search our bibliography using the filters on the right-hand side.

Displaying 51 through 100 of 1477 publications.

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

Paller AS, Siegfried E, Marron SE, Clark M, DiBenedetti D, Nelson L, Chao J, Bansal A, Chuang CC, Wang Z. Development and validation of a caregiver-reported NumericRating Scale for measuring worst scratch/itch in patients aged 6 months to younger than 6 years with atopic dermatitis. J Am Acad Dermatol. 2024 Feb;90(2):382-5. doi: 10.1016/j.jaad.2023.08.104

Maeda-Chubachi T, McLeod L, Enloe C, Cartwright M, Siegfried E, Hebert AA, Silverberg N. Defining clinically meaningful improvement in molluscum contagiosum. J Am Acad Dermatol. 2024 Feb;90(2):443-5. doi: 10.1016/j.jaad.2023.10.033

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

Gibble TH, Kosa K, Basnyat B, Martin S, Moses R, Dubinsky M. Patient perspectives on symptoms and impacts in Crohn's disease: results from qualitative research. Poster presented at the European Crohn's and Colitis Organisation (ECCO) 2024; February 21, 2024. Stockholm, Sweden. [abstract] J Crohns Colitis. 2024 Jan; 18(Suppl 1):i265.

Gibble TH, Kosa K, Basnyat B, Martin S, Moses R, Dubinsky M. Cognitive debriefing of a patient-reported outcome measure for abdominal pain and loose stool frequency in Crohn's disease. Poster presented at the European Crohn's and Colitis Organisation (ECCO) 2024; February 21, 2024. Stockholm, Sweden. [abstract] J Crohns Colitis. 2024 Jan; 18(Suppl 1):i572.

Norman K, French A, Lake A, Tchuisseu YP, Repka S, Vasudeva K, Dong C, Whitaker R, Bettger JP. Describing perspectives of telehealth and the impact on equity in access to health care from community and provider perspectives: a multimethod analysis. Telemed J E Health. 2024 Jan;30(1):242-59. doi: 10.1089/tmj.2023.0036

Martin Nguyen A, La Rosa C, Cornell AG, Sher MR, Bernstein JA, Birring SS, DeMuro Romano C, Mayorga M, Milien M, Ervin C. Content validity of the Leicester Cough Questionnaire in adults with refractory or unexplained chronic cough: a qualitative interview study. Ther Adv Respir Dis. 2024 Jan;18:175346662. doi: 10.1177/17534666241274261

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.

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.

Doma R, Suminski N, Gold A. Landscape analysis of Alzheimer's disease-specific caregiver outcome assessments. Poster presented at the ISPOR Europe 2023; November 12, 2023. Copenhagen, Denmark. [abstract] Value Health. 2023 Dec; 26(12 Supplement):S227. doi: 10.1016/j.jval.2023.09.1173

Gold A, Brouwer E, Hakkarainen KM, Brown D. A review of patient-reported outcomes and external control arms in regulatory submissions of novel oncology drugs. Poster presented at the ISPOR Europe 2023; November 12, 2023. Copenhagen, Denmark. [abstract] Value Health. 2023 Dec; 26(12 Supplement):S216-7. doi: 10.1016/j.jval.2023.09.1120

Nelson L, Ing SW, Rubin MR, Ma J, Martin S, Sen R, Ayodele O. Psychometric analysis of the patient-reported hypoparathyroidism symptom diary symptom subscale using data from two clinical trials. Patient Relat Outcome Meas. 2023 Nov 28;14:355-67. doi: 10.2147/PROM.S414794

Phillips T, Lugtenburg P, Kalsekar A, Mutebi A, Wang A, Blaedel J, Kosa K, Martin S, Sacchi M, Kilavuz N, Thieblemont C. Improvements in patient-reported outcomes in relapsed or refractory large b-cell lymphoma patients treated with epcoritamab. Clin Lymphoma Myeloma Leuk. 2023 Nov 27;24(3):e78-e87.e. doi: 10.1016/j.clml.2023.11.005

Doward L, Hawe E, Lloyd A, Wolowacz S. Estimating health-state utility for economic models in clinical trials and real-world studies. Presented at the ISPOR Europe 2023; November 12, 2023. Copenhagen, Denmark.

Clevenger C, Brubaker M, Patel M, Cummings J, Jackson WC, Stroud C, Pechin S, Bratlee-Whitaker E, Brown TM, Fehnel S, Grossberg G. One minute to recognition: the agitation in Alzheimer's screener for caregivers (AASC). Poster presented at the Gerontological Society of America's 2023 Annual Scientific Meeting; November 10, 2023. Tampa, FL.

Gold A, Suminksi N, Abbetz-Web L, Rudell K. Patient-focused evaluation of infant and toddler developmental clinical outcomes assessments (COAs) in clinical trials. Poster presented at the 30th Annual Conference of the International Society for Quality of Life Research (ISOQOL); October 18, 2023. [abstract] Qual Life Res. 2023 Nov 4; 32(Suppl 2):S110-1. doi: 10.1007/s11136-023-03530-x

Kamudoni P, Olayinka-Amao B, Barrett A, Park J. Appropriateness of Skindex 29 1 3 in cutaneous lupus erythematosus. Poster presented at the 30th Annual Conference of the International Society for Quality of Life Research; October 18, 2023. Alberta, Canada. [abstract] Qual Life Res. 2023 Nov 4; 32(Supple 2):S203. doi: 10.1007/s11136-023-03530-x

Kamudoni P, Olayinka-Amao O, Barrett A, Park J. Identifying meaningful aspects of worst itch in cutaneous lupus erythematosus for assessment using an itch numeric rating scale. Poster presented at the 30th Annual Conference of the International Society for Quality of Life Research; October 18, 2023. Alberta, Canada. [abstract] Qual Life Res. 2023 Nov 4; 32(Suppl2):S204. doi: 10.1007/s11136-023-03530-x

Druce KL, Yimer BB, Humphreys J, Njuki LN, Bourke D, Li M, Ellis B, Zhang Y, Bravo R, Hyrich KL, Verstappen SMM, Dixon WG, McBeth J. The epidemiology of psoriatic arthritis in the UK: a health intelligence analysis of UK primary care electronic health records 1991-2020. Rheumatology. 2023 Nov 2. doi: 10.1093/rheumatology/kead586

Freed SS, Jones KA, Whitaker RG, Norman K, Carvalho M, Giri A, Lake A, Tchuisseu YP, Repka S, Vasudeva K, Bey N, Bettger JP. Evaluating telehealth uptake among North Carolina Medicaid beneficiaries with musculoskeletal conditions: insights from the COVID-19 pandemic. Med Care. 2023 Nov 1;61(11):750-9. doi: 10.1097/MLR.0000000000001915

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

Danese D, Goss D, Romano (DeMuro) C, Gupta C. Qualitative assessment of the patient experience of primary hyperoxaluria type 1: an observational study. BMC Nephrol. 2023 Oct 26;24(1):319. doi: 10.1186/s12882-023-03365-1

Korver D. A gentle introduction to creating SAS graphs Part 2. Presented at the Southeast SAS User Group Conference; October 24, 2023. Charlotte, NC.

Romano (DeMuro) C, Bratlee-Whitaker E, Herring WL, Callahan L, Raimundo K, Taylor J, Taylor G, Kremer I, Lappin D, Frangiosa T, Gnanasakthy K, Goss D, Paulsen R, Hartry A, DiBenedetti D. Measuring what matters most to people living with Alzheimer's disease and care partners: what matters most qualitative research. Poster presented at the 16th Clinical Trials on Alzheimer's Disease (CTAD); October 24, 2023. Boston, MA.

DiBenedetti D, Doward L. Innovations in in-trial interviews: novel approaches to capturing the patient experience in quality of life research. Presented at the ISOQOL 30th Annual Conference; October 21, 2023. Calgary, Canada.

Rockwood N, Qin S, Yarr S. Estimating change score/responsiveness correlations among ordinal measures. Presented at the ISOQOL 30th Annual Conference; October 20, 2023. Calgary, Canada.

Rockwood N. An agreement-based ICC for estimating interrater reliability in a finite population of raters. Poster presented at the ISOQOL 30th Annual Conference; October 19, 2023. Calgary, Canada.

DiBenedetti D, Doward L. Design considerations for successful in-trial interviews: the who, what, when, where, and how. Presented at the ISOQOL 30th Annual Conference; October 18, 2023. Calgary, Canada.

Mogle J, Turner JR, Bhargava S, Stawski RS, Almeida DM, Hill NL. Individual differences in frequency and impact of daily memory lapses: results from a national lifespan sample. BMC geriatr. 2023 Oct 17;23(1):670. doi: 10.1186/s12877-023-04363-6

Little CL, Druce KL, Dixon WG, Schultz DM, House T, McBeth J. What do people living with chronic pain want from a pain forecast? A research prioritization study. PLoS One. 2023 Oct 12;18(10):e0292968. doi: 10.1371/journal.pone.0292968

Whalley D, Balp M, Yarr S, Porter M, Barve A. Patient-reported symptom burden in chronic inducible urticaria: post hoc analysis of baseline data from a phase 3 clinical trial. Poster presented at the 2023 EADV Congress; October 11, 2023. Berlin, Germany.

DiBenedetti D, Kosa K, Waters HC, Oberdhan D. Understanding patients' experiences with borderline personality disorder: qualitative interviews. Neuropsychiatr Dis Treat. 2023 Oct 9;19:2115-25. doi: 10.2147/NDT.S423882

Dubov A, Krakower DS, Rockwood N, Montgomery S, Shoptaw S. Provider implicit bias in prescribing HIV pre-exposure prophylaxis (PrEP) to people who inject drugs. J Gen Intern Med. 2023 Oct;38(13):2928-35. doi: 10.1007/s11606-023-08040-7

Chrissian AA, De Silva S, Quan M, Wiltchik E, Patel P, Furukawa B, Rogstad D, Rockwood N, Ho E, Cheek G. Utility of multimodal sampling and testing during advanced bronchoscopy for diagnosing atypical respiratory infections in a Coccidioides-endemic region. J Thorac Dis. 2023 Sep 1;15(9). doi: 10.21037/jtd-23-83

Fehlmann B, Thomann A, Davies E, Twiss J, Romano C, Whalley D, Mayorga M, Levy C, Lipsmeier F, Popp W, Kustermann T, Svoboda H, Nikolcheva T, Trundell D, Lindemann M, Taylor K. Patient perspectives on symptoms and functional impacts to inform a digital assessment of Parkinson's disease. Poster presented at the 2023 International Congress of Parkingson's Disease and Movement Disorders; August 27, 2023. Copenhagen, Denmark.

Wilson A, Kragh N, DiBenedetti D, Pan-Petesch B, Wynn T, Neme D, Willemze A. Patient experience with efanesoctocog alfa: results from the XTEND-1 phase 3 clinical trial exit interviews in patients with severe haemophilia A. Poster presented at the 75th Bleeding Disorders Conference (BDC); August 17, 2023. Baltimore, MD. Previously presented at the 16th Annual Congress of European Association for Haemophilia and Allied Disorders 2023.

Joly F, DasMahapatra P, DiBenedetti DB, Kosa K, Hill QA. Development of the cold agglutinin disease symptoms and impact questionnaire (CAD-SIQ). Eur J Haematol. 2023 Aug;111(2):211-9. doi: 10.1111/ejh.13984

Iwamoto BK, Neece CL, Nair A, Rockwood NJ, Fenning RM, Krantz ML, Van Dyk TR. Exploring bidirectional relationships: child sleep duration, child behavior problems, and parenting stress in families of children with autism spectrum disorder. Res Autism Spectr Disord. 2023 Aug;106:102197. doi: 10.1016/j.rasd.2023.102197

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

Romano CD, Slota C, Bratlee-Whitaker E, Edwards T, Herring WL, McLeod L, Callahan L, Bullok K, Raimundo K, Taylor J, Taylor G, Kremer I, Monks D, Lappin D, Frangiosa T, Gnanasakthy K, Goss D, Comer M, Paulsen R, Hartry A, DiBenedetti D. Measuring "What Matters Most™" to individuals living with Alzheimer's disease and care partners: a conceptual model of Alzheimer's disease. Poster presented at the AAIC 2023 Conference; July 16, 2023. Amsterdam, Netherlands.

Frederiksen KS, Crawford R, Hahn-Pedersen J, Morrison R, Jeppesen R, Doward L, Weidner W. “Don't you recognize me...?”: insights from social media posts on the impact of alzheimer's disease on care partners. Poster presented at the AAIC 2023 Conference; July 16, 2023. Amsterdam, Netherlands.

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

Turner JR, Hill NL, Bhargava S, Madrigal C, Almeida DM, Mogle J. Age discrepancies across two decades: desiring to be younger is associated with daily negative affect over three waves of assessment. Prev Sci. 2023 Jul;24(5):901-10. doi: 10.1007/s11121-022-01386-0

Gnanasakthy A, Norcross L, Fitzgerald K. Editorial - Assessment of patient-reported outcomes in industry-sponsored phase 1 oncology studies: considerations for translating theory into practice. Value Health. 2023 Jun 21;26(10):1440-3. doi: 10.1016/j.jval.2023.06.006

Turner JR, Hill NL, Brautigam L, Bhargava S, Mogle J. How does exposure to dementia relate to subjective cognition? A systematic review. Innov Aging. 2023 Jun 19. doi: 10.1093/geroni/igad056

Cella D, Wen PY, Ervin C, Vallow S, Gilloteau I, DeMuro C, Mordin M, Agostinho AC, Dine J. Understanding the patient experience and treatment benefits in patients with non–small-cell lung cancer with brain metastasis. Cancer Med. 2023 Jun 12;12(12):13637-48. doi: 10.1002/cam4.5975

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.

Edwards T, Norcross L, Fine J, Martin S, Coulouvrat C, Spears P, Herold CI, Ferrari G, Onwudiwe N. Side effects and impacts of extended adjuvant endocrine therapy: a qualitative study among women with HR+/HER2- breast cancer. Poster presented at the 2023 ASCO Annual Meeting; June 2, 2023. Chicago, IL. [abstract] J Clin Oncol. 2023 Jun; 41(Suppl 16):e12509. doi: 10.1200/JCO.2023.41.16_suppl.e12509

Grant S, Gold A, Pavisic I, Doma R, Rudell K. Using qualitative methods to develop grounded relevant content for preference surveys in a Specific Rare Bleeding Disorder (SRBD). Poster presented at the ISPOR 2023; May 7, 2023. Boston, MA. [abstract] Value Health. 2023 Jun; 26(6 Supplement):S327. doi: 10.1016/j.jval.2023.03.1864