Publications
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Displaying 1 through 50 of 62 publications.
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Loria-Rebolledo LE, van Woerden HC, Bryers H, Erdem S, Watson V. Preferences of recent mums in remote and rural areas for type of intrapartum care: a discrete choice experiment. Patient. 2024 Nov;17(6):663-72. doi: 10.1007/s40271-024-00704-8.
Vass C, Boeri M, Shields G, Seo J. Making use of technology to improve stated preference studies. Patient. 2024 Sep;17(5):483-91. doi: 10.1007/s40271-024-00693-8
Gnanasakthy A, Romano DeMuro C. Editorial - The limitations of EQ‑5D as a clinical outcome assessment tool. Patient. 2024 May;17(3):215-7. doi: 10.1007/s40271-024-00683-w
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
Muhlbacher AC, de Bekker-Grob EW, Rivero-Arias O, Levitan B, Vass C. How to present a decision object in health preference research: attributes and levels, the decision model, and the descriptive framework. Patient. 2024 Feb 10. doi: 10.1007/s40271-024-00673-y
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
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.
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
Watson V, Bryers H, Krucien N, Erdem S, Burnside M, van Woerden HC. The perception of women in rural and remote Scotland about intrapartum care: a qualitative study. Patient. 2023 Mar;16(2):117-25. doi: 10.1007/s40271-022-00608-5
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
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
Gnanasakthy A, Qin S, Norcross L. Editorial - FDA guidance on selecting, developing, or modifying fit-for-purpose clinical outcome assessments: old wine in a new bottle? Patient. 2023 Jan. doi: 10.1007/s40271-022-00607-6
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
Mansfield C, Bullok K, Fuhs JV, Tockhorn-Heidenreich A, Andrews JS, DiBenedetti D, Matthews BR, Darling JC, Sutphin J, Hauber B. The patient voice: exploring treatment preferences in participants with mild cognitive concerns to inform regulatory decision making. Patient. 2022 Sep;15(5):551-64. doi: 10.1007/s40271-022-00576-w
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
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
Vass CM, Barton A, Payne K. Towards personalising the use of biologics in rheumatoid arthritis: a discrete choice experiment. Patient. 2022 Jan;15(1):109-19. doi: 10.1007/s40271-021-00533-z
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.
Gnanasakthy A. Editorial - FDA guidance on assessment of patient‑reported outcomes in cancer trials: a breath of fresh air or a storm in a teacup? Patient. 2021 Nov;14(6):695-7. doi: 10.1007/s40271-021-00542-y
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
Shields GE, Brown L, Wells A, Capobianco L, Vass C. Utilising patient and public involvement in stated preference research in health: learning from the existing literature and a case study. Patient. 2021 Jul;14(4):399-412. doi: 10.1007/s40271-020-00439-2
Vass CM, Boeri M, Poulos C, Turner AJ. Matching and weighting in health preference research. Presented at the 2021 Virtual 12th Meeting of the International Academy of Health Preference Research; June 2021. [abstract] Patient. 2021 Jun 18; p.1-6. doi: 10.1007/s40271-021-00532-0
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
Pearce A, Harrison M, Watson V, Street DJ, Howard K, Bansback N, Bryan S. Respondent understanding in discrete choice experiments: a scoping review. Patient. 2021 Jan;14(1):17-53. doi: 10.1007/s40271-020-00467-y
Vass CM, Boeri M. Mobilising the next generation of stated-preference studies: the association of access device with choice behaviour and data quality. Patient. 2021 Jan;14(1):55-63. doi: 10.1007/s40271-020-00484-x
Doward LC, Balp M-M, Twiss J, Slota C, Cryer D, Brass CA, Anstee QM, Sanyal AJ. Development of a patient-reported outcome measure for non-alcoholic steatohepatitis (NASH-CHECK): results of a qualitative study. Patient. 2020 Dec 18. doi: 10.1007/s40271-020-00485-w
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
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
Hollin IL, Craig BM, Coast J, Beusterien K, Vass CM, DiSantostefano R, Peay H. Reporting formative qualitative research to support the development of quantitative preference study protocols and corresponding survey instruments: guidelines for authors and reviewers. Patient. 2020 Feb;13:121-36. doi: 10.1007/s40271-019-00401-x
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
Barrett A, Hahn-Pedersen J, Kragh N, Evans E, Gnanasakthy A. Patient-reported outcome measures in atopic dermatitis and chronic hand eczema in adults. Patient. 2019 Oct;12(5):445-9. doi: 10.1007/s40271-019-00373-y
Vass CM, Davison N, Vander Stichele G, Payne K. A picture is worth a thousand words: the role of survey training materials in stated-preference studies. Patient. 2019 Sep 30. doi: 10.1007/s40271-019-00391-w
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
Rigby D, Vass C, Payne K. Opening the 'Black Box': an overview of methods to investigate the decision-making process in choice-based surveys. Patient. 2019 Sep 5. doi: 10.1007/s40271-019-00385-8
Crawford R, Sully K, Conroy R, Johnson C, Doward L, Bell T, Welch V, Peloquin F, Gater A. Patient-centered insights on treatment decision making and living with acute myeloid leukemia and other hematologic cancers. Patient. 2019 Aug 28. doi: 10.1007/s40271-019-00384-9
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
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
Vass CM, Rigby D, Paynee K. “I was trying to do the maths”: exploring the impact of risk communication in discrete choice experiments. Patient. 2019 Feb;12(1):113-23. doi: 10.1007/s40271-018-0326-4
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
Wright SJ, Vass CM, Sim G, Burton M, Fiebig DG, Payne K. Accounting for scale heterogeneity in healthcare-related discrete choice experiments when comparing stated preferences: a systematic review. Patient. 2018 Oct;11(5):475-88. doi: 10.1007/s40271-018-0304-x
Vass CM, Wright S, Burton M, Payne K. Scale heterogeneity in healthcare discrete choice experiments: a primer. Patient. 2018 Apr;11(2):167-73. doi: 10.1007/s40271-017-0282-4
Ikenwilo D, Heidenreich S, Ryan M, Mankowski C, Nazir J, Watson V. The best of both worlds: an example mixed methods approach to understand men's preferences for the treatment of lower urinary tract symptoms. Patient. 2018 Feb;11(1):55-67. doi: 10.1007/s40271-017-0263-7