Publications

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

Displaying 1 through 50 of 86 publications.

Bratlee-Whitaker E, Hill NL, Mogle J, Bhargava S, DeMuro Romano C. Older adults' dementia worry, self-reported cognition, and control beliefs about cognitive aging: a mixed methods study. Presented at the 31st Annual Conference of the International Society for Quality of Life Research (ISOQOL); October 15, 2024. Cologne, Germany. [abstract] Qual Life Res. 2024 Oct 14; 33(Suppl 1).

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

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

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

Qin S, Nelson L, Williams N, Williams V, Bender R, McLeod L. Comparison of anchor-based methods for estimating thresholds of meaningful within-patient change using simulated PROMIS PF 20a data under various joint distribution characteristic conditions. Qual Life Res. 2023 May;32(5):1277-93. doi: 10.1007/s11136-022-03285-x

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

Trennery C, Kosa K, Joshi A, Demetriou L, Martin S. Applying established methods to evaluate the meaningfulness of PRO endpoints to endpoints defined by Clinician-reported Outcomes (ClinROs): an example of uncomplicated Urinary Tract Infection (uUTI). Poster presented at the ISOQOL 29th Annual Conference 2022; October 19, 2022. Prague, Czech Republic. [abstract] Qual Life Res. 2022 Nov 25; 31((Suppl 2)):S132. doi: 10.1007/s11136-022-03257-1

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

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

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

Qin S, Nelson L, McLeod L, Ma J, López Sánchez B, Gamil M, Stevens M, Jane Scott J. Psychometric evaluation of the pediatric RSV severity and outcomes rating system version 7 (PRESORSv7.1, observer-reported and PRESORSv7 clinician- reported forms) scores in young children hospitalized with respiratory syncytial virus infection. Presented at the 2021 Virtual Visual ISOQOL 28th Annual Conference; October 12, 2021. [abstract] Qual Life Res. 2021; 30(Suppl 1):S16-7. doi: https://doi.org/10.1007/s11136-021-02976-1

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

Saretsky T, DeMuro C, Finelli L, Phillips M, Lewis S, Martin E, Osborne R, Norquist J. Modification of an existing patient-reported outcome measure (PROM) for a new context of use in a seasonal infectious disease. Poster presented at the 27th Annual Virtual Conference of the International Society for Quality of Life Research (ISQOL); October 19, 2020. [abstract] Qual Life Res. 2020 Oct 17; 29(Suppl 1):S139. doi: 10.1007/s11136-020-02626-y

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

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

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

Qin S, Nelson L, McLeod L, Eremenco S, Coons SJ. Assessing test-retest reliability of patient-reported outcome measures using intraclass correlation coefficients: recommendations for selecting and documenting the analytical formula. Qual Life Res. 2019 Apr;28(4):1029-33. doi: 10.1007/s11136-018-2076-0

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

Williams V, DeMuro C, Lewis S, Williams N, Wolynn T, Wisman P, Block SL, Senders S, Toback S, Chien JW. Psychometric evaluation of a caregiver diary for the assessment of symptoms of respiratory syncytial virus. J Patient Rep Outcomes. 2018;2(10). doi: 10.1186/s41687-018-0036-7

Mercieca-Bebber R, Rouette J, Calvert M, King MT, McLeod L, Holch P, Palmer MJ, Brundage M, ISOQOL Best Practice for PROs-Reporting Task Force. Preliminary evidence on the uptake, use, and benefits of the CONSORT-PRO extension. Qual Life Res. 2017 Jun;26(6):1427-37. doi: 10.1007/s11136-017-1508-6

Young L, Dong O, Wiltshire T, Kypzyk K, Guenzel N. MC4R polymorphism associated with antipsychotic-associated weight gain. Poster presented at the 11th Congress of the International Society of Nutrigenetics and Nutrigenomics Annual Meeting; September 17, 2017. Los Angeles, CA. [abstract] J Nutrigenet Nutrigenomics. 2017; 10:121. doi: 10.1159/000480052

Dong OM, Suzuki O, Howard R, Jamieson K, Pointer M, Kohlmeier T, Wiltshire T. Using targeted next-generation sequencing as a cost-efficient method to characterize the genetics of salt sensitivity. Poster presented at the 11th Congress of the International Society of Nutrigenetics and Nutrigenomics Annual Meeting; September 18, 2017. Los Angeles, CA. [abstract] J Nutrigenet Nutrigenomics. 2017; 10:100. doi: 10.1159/000480052

Brown TM, Martin S, Fehnel SE, Deal LS. Development of the impact of juvenile metachromatic leukodystrophy on physical activities scale. J Patient Rep Outcomes. 2017;2(1):15. doi: 10.1186/s41687-018-0041-x

Luquiens A, Whalley D, Laramee P, Falissard B, Kostogianni N, Rehm J, Manthey J, Paille F, Aubin HJ. Validation of a new patient-reported outcome instrument of health-related quality of life specific to patients with alcohol use disorder: the Alcohol Quality of Life Scale (AQoLS). Qual Life Res. 2016 Jun;25(6):1549-60. doi: 10.1007/s11136-015-1190-5

Chirila C, Zheng Q, Davenport E, Kaschinski D, Pfarr E, Hach T, Palencia R. Treatment satisfaction in type 2 diabetes patients taking empagliflozin compared with patients taking glimepiride. Qual Life Res. 2016 May;25(5):1199-207. doi: 10.1007/s11136-015-1140-2

Wilburn J, McKenna SP, Twiss J, Kemp K, Campbell S. Assessing quality of life in Crohn's disease: development and validation of the Crohn's Life Impact Questionnaire (CLIQ). Qual Life Res. 2015 Sep;24(9):2279-88. doi: 10.1007/s11136-015-0947-1.

Luquiens A, Whalley D, Crawford SR, Laramée P, Doward L, Price M, Hawken N, Dorey J, Owens L, Llorca PM, Falissard B, Aubin HJ. Development of the Alcohol Quality of Life Scale (AQoLS): a new patient-reported outcome measure to assess health-related quality of life in alcohol use disorder. Qual Life Res. 2015 Jun;24(6):1471-81. doi: 10.1007/s11136-014-0865-7

Twiss J, McKenna SP. Comparing the impact of psoriasis and atopic dermatitis on quality of life: co-calibration of the PSORIQoL and QoLIAD. Qual Life Res. 2015 Jan;24(1):105-13. doi: 10.1007/s11136-014-0630-y

Meyers JL, Parasuraman S, Bell K, Graham JP, Candrilli SD. The high-cost, type 2 diabetes mellitus patient: an analysis of managed care administrative data. Arch Public Health. 2014 Feb 27;72(1):6.

Ascher-Svanum H, Novick D, Haro JM, Aguado J, Cui Z. Empirically driven definitions of "good", "moderate" and "bad" levels of functioning in the treatment of schizophrenia. Qual Life Res. 2013 Oct;22(8):2085-94.

Reeve BB, Wyrwich KW, Wu AW, Velikova G, Terwee CB, Snyder CF, Schwartz C, Revicki DA, Moinpour CM, McLeod LD, Lyons JC, Lenderking WR, Hinds PS, Hays RD, Greenhalgh J, Gershon R, Feeny D, Fayers PM, Cella D, Brundage M, Ahmed S, Aaronson NK, Butt Z. ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Qual Life Res. 2013 Oct;22(8):1889-905. doi: 10.1007/s11136-012-0344-y

Twiss J, McKenna SP. Equating scores on two dermatology-specific patient-reported outcome measures. Poster presented at the 19th Annual Conference of the International Society for Quality of Life Research (ISOQOL); October 2012. Budapest, Hungary. [abstract] Qual Life Res. 2012 Oct; 21(1):94. doi: 10.1007/s11136-012-0248-x

Ben-L'amri M, McKenna SP, Wilburn J, Twiss J. Assessing quality of life in new regions of the world: further development of the PsAQoL. Poster presented at the 19th Annual Conference of the International Society for Quality of Life Research (ISOQOL); October 2012. Budapest, Hungary. [abstract] Qual Life Res. 2012 Oct; 21(S1):120.