Publications
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Smith A, Gore JL, Chisolm S, Squires P, Li H, Dave HK, Vass C, Liu X, Mansfield C. Non-muscle invasive bladder cancer treatment selection in an emerging treatment era: a patient preference study. Poster presented at the American Society of Clinical Oncology (ASCO) Genitourinary Cancers Symposium; February 13, 2025. San Francisco, CA. [abstract] J Clin Oncol. 2025 Feb 18; 43(Suppl 5):754. doi: 10.1200/JCO.2025.43.5_suppl.754
Smith A, Gore J, Chisolm S, Squires P, Li H, Franco S, Vass C, Liu X, Mansfield C. Muscle invasive bladder cancer treatment selection in an emerging treatment era: a patient preference study. Poster presented at the American Society of Clinical Oncology (ASCO) Genitourinary Cancers Symposium; February 13, 2025. San Francisco, CA. [abstract] J Clin Oncol. 2025; 43(Suppl 5):753.
Razavi P, Ahmed M, Roush A, Parikh R, Hitchens A, Shen S, Safonov A, Jhaveri K, Robson M, Peacock N, Ma Y, Santarsiero E, Ganapathy V, Shah R, Amaefule A, Lteif A, Blakely J. Real-world (RW) risk of recurrence among patients (pts) diagnosed with stage II-III HR+/HER2− early breast cancer (EBC) treated with endocrine therapy (ET) in the US. J Clin Oncol. 2024 May;42(Suppl 16):e12533.
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
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
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.
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
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
Vass C, Pinto CA, Myers K, Imai K, Bussberg C, Bhattacharya R, Calhoun SR, Poulos C. Heterogeneity in physician and patient preferences for the treatment of renal cell carcinoma: evidence from latent class analysis. Poster presented at the 2023 ASCO Genitourinary Cancers Symposium; February 16, 2023. San Franciso, CA. [abstract] J Clin Oncol. 2023 Feb 20; 41(Suppl 6):661. doi: 10.1200/JCO.2023.41.6_suppl.661
Calhoun SR, Vass C, Myers K, Imai K, Bussberg C, Bhattacharya R, Pinto CA, Poulos C. Patient and physician preferences for adjuvant treatment of renal cell carcinoma: a discrete-choice experiment. Poster presented at the 2023 ASCO Genitourinary Cancers Symposium; February 16, 2023. San Franciso, CA. [abstract] J Clin Oncol. 2023 Feb 20; 41(Suppl 6):635. doi: 10.1200/JCO.2023.41.6_suppl.635
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
Grivas P, Barata PC, Moon H, Hutson TE, Gupta S, Sternberg CN, Dave V, Downey C, Shillington AC, Devgan G, Kirker M, Thakkar S, Katzenstein HM, Bhanegaonkar A, Liu F, Brown J, Sonpavde GP. Baseline characteristics from a retrospective, observational, US-based, multicenter, real-world (RW) study of avelumab first-line maintenance (1LM) in locally advanced/metastatic urothelial carcinoma (la/mUC) (PATRIOT-II). Poster presented at the 2023 ASCO Genitourinary Cancers Symposium; February 16, 2023. San Francisco, CA. [abstract] J Clin Oncol. 2023 Feb 1; 41(Suppl 4). doi: 10.1200/JCO.2023.41.6_suppl.465
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
Furqan M, Karanth S, Goyal RK, Shih Y, Cai B, Rombi J, Davis KL, Caro N, Saliba TR. Real-world assessment of treatment effectiveness in patients with advanced non-small cell lung cancer (aNSCLC) with MET exon 14 skipping (METex14). Poster presented at the 2023 ASCO Annual Meeting; June 2, 2023. Chicago, IL. [abstract] J Clin Oncol. 2023; 4((Suppl 16):e21112.
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
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
Paik PK, Goyal RK, Cai B, Price M, Davis K, Derrien Ansquer V, Caro N, Saliba TR. Real-world assessment of clinical outcomes in NSCLC patients with MET exon 14 skipping mutation and brain metastases (BM) treated with capmatinib. Poster presented at the ASCO 2022 Annual Meeting; June 2022. Chicago, IL. [abstract] J Clin Oncol. 2022 Jun 2; 40(16_suppl):e21171. doi: 10.1200/JCO.2022.40.16_suppl.e21171
Hamadani M, Graham C, Liao L, Zhang K, Strat HM, Ungar D, Ai W, Chen L, Carlo-Stella C. Long-term survival projections of loncastuximab tesirine-treated patients in relapsed or refractory (R/R) diffuse large B-cell lymphoma (DLBCL). J Clin Oncol. 2022 Jun;40(16_suppl):e19551.
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
Ciruelos EM, Rugo HS, Mayer IA, Levy C, Forget F, Delgado Mingorance JI, Safra T, Masuda N, Park YH, Juric D, Conte P, Campone M, Loibl S, Iwata H, Zhou X, Park J, Ridolfi A, Lorenzo I, Andre F. Patient-reported outcomes in patients with PIK3CA-mutated hormone receptor-positive, human epidermal growth factor receptor 2–negative advanced breast cancer from SOLAR-1. J Clin Oncol. 2021 Jun 20;39(18):2005-15. doi: 10.1200/JCO.20.01139
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
Motzer RJ, Porta C, Alekseev B, Rha SY, Choueiri TK, Mendez-Vidal MJ, Hong SH, Kapoor A, Goh JC, Eto M, Wang J, Pan J, Ayele Asfaw A, He CS, Mody K, Cella D. Health-related quality-of-life (HRQoL) analysis from the phase 3 CLEAR trial of lenvatinib (LEN) plus pembrolizumab (PEMBRO) or everolimus (EVE) versus sunitinib (SUN) for patients (pts) with advanced renal cell carcinoma (aRCC). Presented at the 2021 ASCO Conference; June 4, 2021. [abstract] J Clin Oncol. 2021; 39(Suppl 15):4502.
Wyrwicz L, Elimova E, Blum SI, Xiao H, Davenport E, Wang J, Hunter S, Li M, Kondo K, Mohler M. Health-related quality of life (HRQOL) in patients (pts) with advanced gastric cancer/gastroesophageal junction cancer (GC/GEJC) or esophageal adenocarcinoma (EAC): interim results of nivolumab plus chemotherapy (N+C) versus (C) from CheckMate 649. Poster presented at the 2021 ASCO Conference; June 4, 2021. [abstract] J Clin Oncol. 2021; 39(Suppl 15):4066. doi: 10.1200/JCO.2021.39.15_suppl.4066
Cella D, Hackshaw MD, Vondeling GT, Bennett L, Garbinsky D, Saito K, Sugihara M, Bang YJ, Yamaguchi K, Shitara K. Quality-adjusted time without symptoms or toxicity (Q-TWiST) of trastuzumab deruxtecan (T-DXd) versus chemotherapy in patients with advanced gastric cancer from the DESTINY-Gastric01 trial. Poster presented at the 2021 ASCO Conference; June 4, 2021. [abstract] J Clin Oncol. 2021; 39(Suppl 15):4057. doi: 10.1200/JCO.2021.39.15_suppl.4057
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
Stirnadel-Farrant H, Mahajan A, Dhillon N, Patel N, Pokras S. Current treatment efficacy for metastatic soft tissue sarcoma: a targeted literature review. Poster presented at the 2020 ASCO Annual Meeting I; May 25, 2020. Chicago, IL. [abstract] J Clin Oncol. 2020 Jun; 38(15_Suppl). doi: 10.1200/JCO.2020.38.15_suppl.e23577
Richardson D, Zhan L, Reynolds M, Odom D, Hollis K, Mitra D, McRoy L, Jones C, Mahtani R, Hargis J. The effect of neutropenia on patient-reported functioning and Quality of Life (QOL) among palbociclib participants of the MADELINE Study. Poster presented at the 2020 ASCO Virtual Scientific Program; June 2020. [abstract] J Clin Oncol. 2020 Jun; 38(2020):1064. doi: 10.1200/JCO.2020.38.15_suppl.1064
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
Poonnen P, Dong O, Winski D, Reed SD, Vashistha V, Bates JS, Kelley MJ, Voora D. Cost-effectiveness of genomic profiling in veterans with metastatic lung adenocarcinoma. Poster presented at the 2020 Virtual American Society of Clinical Oncology Scientific Program Meeting; May 29, 2020. [abstract] J Clin Oncol. 2020; 38(15 Suppl):7075.
Dzimitrowicz H, Esterberg L, Miles L, Zanotti G, Borham A, Harrison MR. Provider referral patterns following nephrectomy in high-risk locoregional renal cell carcinoma. Poster presented at the 2020 Genitourinary Cancers ASCO Symposium; February 15, 2020. San Francisco, CA. [abstract] J Clin Oncol. 2020; 38(Suppl 6):abstr 636.
Messina AJ, Andrianov V, Mazzolenis D, Vidal-Fisher L. Emerging trends and utilization of patient-reported outcomes (PROs) in clinical trials of chimeric antigen receptor (CAR) T-cell therapies. J Clin Oncol. 2020;38(2020):e19142. doi: 10.1200/JCO.2020.38.15_suppl.e19142
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
Fizazi K, Shore ND, Tammela T, Kuss I, Le Berre M, Mohamed AF, Odom D, Bartsch J, Snapir A, Sarapohja T, Smith MR. Impact of darolutamide (DARO) on pain and quality of life (QoL) in patients (PTS) with nonmetastatic castrate-resistant prostate cancer (NMCRPC). Presented at the 2019 American Society of Clinical Oncology (ASCO) Annual Meeting; May 31, 2019. Chicago, IL. [abstract] J Clin Oncol. 2019 Jun; 37(15_Suppl).
Kummar S, Mascarenhas L, Geoerger B, Turpin B, Cox, MC, Yu S, Nanda S, Hiemeyer F, Keating KN, Chirila C, Gnanasakthy A, Davenport E, Hong DS, Drilon AE. Patient-reported outcomes from two global multicenter clinical trials of children and adults with tropomyosin receptor kinase (TRK) fusion cancer receiving larotrectinib. Poster presented at the 2019 American Society of Clinical Oncology (ASCO) Annual Meeting; June 1, 2019. Chicago, IL. [abstract] J Clin Oncol. 2019 Jun; 37(2019):6602.
Price M, Ravelo A, Sae-Hau M, Torney PA, Gonzalez V, Weiss ES, Mansfield C, Mange B, Comenencia Ortiz E, Masaquel A, Lamont Dawson K. Patient-reported disease burden in chronic lymphocytic leukemia, diffuse large B-cell lymphoma, and follicular lymphoma: results from a national patient advocacy survey. Poster presented at the 2019 ASCO Annual Meeting; May 2019. [abstract] J Clin Oncol. 2019 May 26; 37(15_suppl):e18198. doi: 10.1200/JCO.2019.37.15_suppl.e18198
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
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
Kawai AT, Martinez D, Saltus CW, Vassilev Z, Soriano-Gabarro M, Kaye JA. Incidence of skeletal-related events in men with castration-resistant prostate cancer. Poster presented at the Palliative and Supportive Care in Oncology Symposium; November 17, 2018. San Diego, CA. [abstract] J Clin Oncol. 2018 Nov 28; 36(34_suppl):188. doi: 10.1200/JCO.2018.36.34_suppl.188