Publications

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Displaying 1 through 50 of 121 publications.

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.

Moehler M, Xiao H, Blum SI, Elimova E, Cella D, Shitara K, Ajani JA, Janjigian YY, Garrido M, Shen L, Yamaguchi K, Liu T, Schenker M, Kowalyszyn R, Bragagnoli AC, Bruges R, Montesarchio V, Pazo-Cid R, Hunter S, Davenport E, Wang J, Kondo K, Li M, Wyrwicz L. Health-Related quality of life with nivolumab plus chemotherapy versus chemotherapy in patients with advanced gastric/gastroesophageal junction cancer or esophageal adenocarcinoma from CheckMate 649. J Clin Oncol. 2023 Dec 10;41(35):5388-99. doi: 10.1200/JCO.23.00170

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.

Kirkeleit J, Riise T, Wielscher M, Accordini S, Carsin AE, Dratva J, Franklin KA, Garcia-Aymerich J, Jarvis D, Leynaert B, Lodge CJ, Real FG, Schlunssen V, Corsico AG, Heinrich J, Holm M, Janson C, Benediktsdottir B, Jogi R, Dharmage SC, Jarvelin MR, Svanes C. Early life exposures contributing to accelerated lung function decline in adulthood - a follow-up study of 11,000 adults from the general population. EClinicalMedicine. 2023 Dec 8;66:102339. doi: 10.1016/j.eclinm.2023.102339

Sherif B, Burke M, Besse B, Solomon B, Bazhenova L, Kim DW, Lin JJ, Wolf J, Popat S, Goto K, de Langen AJ, Springfeld C, Reynolds M, Odom D, Yuan Y, Lee A, Blum SI, Thamake S, Ades F, Drilon A. Health-related quality-of-life of patients treated with repotrectinib for neurotrophic tyrosine receptor kinase (NTRK)-positive advanced solid tumors: results From TRIDENT-1. Poster presented at the ISPOR Europe 2023; November 14, 2023. Copenhagen, Denmark. [abstract] Value Health. 2023 Dec; 26(12 Supplement):S484. doi: 10.1016/j.jval.2023.09.2619

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

Kekalainen T, Luchetti M, Terracciano A, Gamaldo AA, Mogle J, Lovett HH, Brown J, Rantalainen T, Sliwinski MJ, Sutin AR. Physical activity and cognitive function: moment-to-moment and day-to-day associations. Int J Behav Nutr Phys Act. 2023 Nov 22;20(1):137. doi: 10.1186/s12966-023-01536-9

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

Yee KS, Chirila C, Davenport E, Mladsi D, Barnett C, Kronenberger WG. A post hoc analysis of Projected Retained Ability Scores (PRAS) for the longitudinal assessment of cognitive functioning in patients with neuronopathic mucopolysaccharidosis II receiving intrathecal idursulfase-IT. Orphanet J Rare Dis. 2023 Nov 2;18(1):343. doi: 10.1186/s13023-023-02957-2

Perrone RD, Nunna S, Gandhi HK, Fernandes AW, Garbinsky D, Zhou X. Kidney function decline in autosomal dominant polycystic kidney disease (ADPKD) patients: assessment of real world effectiveness of tolvaptan. Poster presented at the Kidney Week 2023; November 2, 2023. Philadelphia, PA.

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

Miller SE, Mogle JA, Linden-Carmichael AN, Almeida DM. Within‐person associations between alcohol use and memory lapses among middle‐aged and older adults. Drug Alcohol Rev. 2023 Nov;42(7):1754-63. doi: 10.1111/dar.13721

Harrington EE, Graham-Engeland JE, Sliwinski MJ, Van Bogart K, Mogle JA, Katz MJ, Lipton RB, Engeland CG. Older adults' self-reported prospective memory lapses in everyday life: connections to inflammation and gender. J Psychosom Res. 2023 Nov;174:111489. doi: 10.1016/j.jpsychores.2023.111489.

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

Romijnders R, Salis F, Hansen C, Kuderle A, Paraschiv-Ionescu A, Cereatti A, Alcock L, Aminian K, Becker C, Bertuletti S, Bonci T, Brown P, Buckley E, Cantu A, Carsin AE, Caruso M, Caulfield B, Chiari L, D'Ascanio I, Del Din S, Eskofier B, Fernstad SJ, Frohlich MS, Garcia Aymerich J, Gazit E, Hausdorff JM, Hiden H, Hume E, Keogh A, Kirk C, Kluge F, Koch S, Mazza C, Megaritis D, Mico-Amigo E, Muller A, Palmerini L, Rochester L, Schwickert L, Scott K, Sharrack B, Singleton D, Soltani A, Ullrich M, Vereijken B, Vogiatzis I, Yarnall A, Schmidt G, Maetzler W. Ecological validity of a deep learning algorithm to detect gait events from real-life walking bouts in mobility-limiting diseases. Front Nuerol. 2023 Oct 16;14:1247532. doi: 10.3389/fneur.2023.1247532

Gini R, Messina D, Aarts W, Paoletti O, Bartolini CC, Weibel D, Choi J, Cid-Royo A, Elbers RJK, Vaz TA, Belitser SV, Bots SH, Riefolo F, Plana E, Sturkenboom MC. Representation of study scripts to improve transparency and efficiency in multidatabase distributed vaccine studies. Poster presented at the 39th ICPE Annual Conference; August 25, 2023. Halifax, Canada. [abstract] Pharmacoepidemiol Drug Saf. 2023 Oct 12; 32(S1):600-1. doi: 10.1002/pds.5687

Weibel D, De Luise C, Elbers R, van den Bor R, Martin I, Cid-Royo A, Plana E, Garcia de Albeniz Martinez X, Weinrib R, Yefimenko N, Poblador-Plou B, Marconi E, Barbieri E, Stona L, Swart KMA, Roy D, Hyeraci G, Bartolini C, Lupattelli A, Villalobos F, Kendrick K, Garg R, Rubino H, Eijkemans R, Sturkenboom M, Arana A. Utilisation patterns of the COVID-19 mRNA vaccine (Comirnaty®) from the VAC4EU active safety surveillance study in five European countries. Poster presented at the 39th ICPE Annual Conference; August 25, 2023. Halifax, Canada. [abstract] Pharmacoepidemiol Drug Saf. 2023 Oct 12; 32(S1):173-4. doi: 10.1002/pds.5687

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

Jeong M, Turner J, Greaney J, Darling A, Ferguson G, Scott S, Jang H, Mogle J. Memory lapses during a pandemic: differential associations between COVID-stress and daily memory lapses? Soc Personal Psychol. 2023 Oct 9;17(12):e12906. doi: 10.1111/spc3.12906

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

Taverna E, Le Y, Fredman SJ, Mogle JA, Fischer MS, Baucom DH, Marshall AD. Responsivity to interviewer during interview-based assessment of physical intimate partner violence. Psychol Violence. 2023 Sep;13(5):405-14. doi: 10.1037/vio0000482

Le Y, Mogle JA, Feinberg ME. Trajectories of parent and child well-being across the pandemic year: role of financial strain, social distancing, and COVID-19 prevalence. Fam Process. 2023 Sep;62(3):1134-46. doi: 10.1111/famp.12823

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.

Vazquez ML, Vilaplana-Carnerero C, Gomez-Lumbreras A, Prat-Vallverdu O, Marsal JR, Urgell CV, Giner-Soriano M, Morros R. Drug exposure during pregnancy in primary care: an algorithm and observational study from SIDIAP database, Catalunya, Spain. BMJ Open. 2023 Aug 22;13(8):e071335. doi: 10.1136/bmjopen-2022-071335

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.

Boltz M, Mogle J, Kuzmik A, BeLue R, Leslie D, Galvin JE, Resnick B. Testing an intervention to improve posthospital outcomes in persons living with dementia and their family care partners. Innov Aging. 2023 Aug 16;7(7):igad083. doi: 10.1093/geroni/igad083

Sola-Munoz S, Jorge M, Jimenez-Fabrega X, Jimenez-Delgado S, Azeli Y, Marsal JR, Jordan S, Mauri J, Jacob J. Prehospital stratification and prioritisation of non-ST-segment elevation acute coronary syndrome patients (NSTEACS): the MARIACHI scale. Intern Emerg Med. 2023 Aug 2;18(5):1317-27. doi: 10.1007/s11739-023-03274-z

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

Stempniewicz N, Davenport E, Wang J, Sweeney C. Herpes zoster vaccination in 50-59-year-olds: primary care knowledge and practices. Presented at the National Medical Association ( NMA) 2023 Annual Convention and Scientific Assembly; July 29, 2023. New Orleans, LA.

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.