Publications

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Displaying 1 through 50 of 69 publications.

Dave RH, Crayton H, Miravalle A, Tai MH, Wyse K, Houghton K, Hitchens A, Berkovich R. COVID-19 vaccination response in patients with multiple sclerosis treated with ofatumumab in the United States: a medical record review. Neurol Ther. 2024 Oct 23. doi: 10.1007/s40120-024-00671-0

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).

Barrett A, Olayinka-Amao O, Ziemssen T, Bharadia T, Henke C, Kamudoni P. Understanding the symptoms and impacts experienced by people with relapsing-remitting MS: a qualitative investigation using semi-structured interviews. Neurol Ther. 2024 Apr;13(2):449-64. doi: 10.1007/s40120-024-00584-y

Callahan LF, Samsell B, DiBenedetti D, Frangiosa T, Slota C, Biggar V, Paulsen R, Lappin D, Herring WL, Romano (DeMuro) C. Evaluating elements of the care partner experience in individuals who care for people with Alzheimer's disease across the severity spectrum. Neurol Ther. 2024 Feb;13(1):53-67. doi: 10.1007/s40120-023-00558-6

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

Tahami Monfared AA, Phan NTN, Pearson I, Mauskopf J, Cho M, Zhang Q, Hampel H. A systematic review of clinical practice guidelines for Alzheimer's disease and strategies for future advancements. Neurol Ther. 2023 Aug;12(4):1257-84. doi: 10.1007/s40120-023-00504-6

Anderson-Smits C, Ritchey ME, Huang Z, Chavan S, Souayah N, Ay H, Layton BJ. Intravenous immunoglobulin treatment patterns and outcomes in patients with chronic inflammatory demyelinating polyradiculoneuropathy: a US claims database analysis. Neurol Ther. 2023 Aug;12(4):1119-32. doi: 10.1007/s40120-023-00478-5

Layton JB, Ritchey ME, Huang Z, Chavan S, Ay H, Souayah N, Anderson-Smits C. Intravenous immunoglobulin initiation in patients with chronic inflammatory demyelinating polyradiculoneuropathy: a US claims-based cohort study. Neurol Ther. 2023 Aug;12(4):1171-86. doi: 10.1007/s40120-023-00479-4

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

Hauber B, Paulsen R, Krasa HB, Vradenburg G, Comer M, Callahan LF, Winfield J, Potashman M, Hartry A, Lee D, Wilson H, Hoffman DL, Weiberg D, Kremer IN, Taylor GA, Taylor JM, Lappin D, Martin AD, Frangiosa T, Biggar V, Slota C, Romano (DeMuro) C, DiBenedetti D. Assessing what matters to people affected by Alzheimer's disease: a quantitative analysis. Neurol Ther. 2023 Apr;12(2):505-27. doi: 10.1007/s40120-023-00445-0

DiBenedetti D, Menne H, Paulsen R, Krasa HB, Vradenburg G, Comer M, Callahan LF, Winfield J, Potashman M, Heithoff K, Hartry A, Oberdhan D, Wilson H, Hoffman DL, Weinberg D, Kremer IN, Taylor GA, Taylor JM, Lappin D, Martin AD, Hauber B, Romano (DeMuro) C. Technical review of clinical outcomes assessments across the continuum of Alzheimer's disease. Neurol Ther. 2023 Apr;12(2):571-95. doi: 10.1007/s40120-023-00443-2

Forns J, Dudukina E, Hagg D, Szentkuti P, Gembert K, Plana E, Gilsenan A, Horvath-Puho E, Ehrenstein V, Reutfors J, Rebordosa C. Risk of major cardiovascular and cerebrovascular events in users of lisdexamfetamine and other medications for attention-deficit/hyperactivity disorder in Denmark and Sweden: a population-based cohort study. Neurol Ther. 2022 Dec 1;11(4):1659-76. doi: 10.1007/s40120-022-00396-y

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

Tahami Monfared AA, Houghton K, Zhang Q, Mauskopf J, Alzheimer’s Disease Neuroimaging Initiative. Published Erratum - Correction to: Staging disease severity using the Alzheimer's Disease Composite Score (ADCOMS): a retrospective data analysis. Neurol Ther. 2022 Jun;11(2):915-27. doi: 10.1007/s40120-022-00340-0

Tahami Monfared AA, Houghton K, Zhang Q, Mauskopf J, Alzheimer’s Disease Neuroimaging Initiative. Staging disease severity using the Alzheimer's disease composite score (ADCOMS): a retrospective data analysis. Neurol Ther. 2022 Mar;11(1):413-34. doi: 10.1007/s40120-022-00326-y

Lewis S, Wray SE, Evans E, Romano (DeMuro) C, Bartolome L, Su W, Shah R, Russo PA. Patients' experiences in transitioning to secondary progressive multiple sclerosis: qualitative interviews. Neurol Ther. 2021 Dec;10(2):887-904. doi: 10.1007/s40120-021-00265-0

Herring WL, Gould IG, Fillit H, Lindgren P, Forrestal F, Thompson R, Pemberton-Ross P. Predicted lifetime health outcomes for aducanumab in patients with early Alzheimer's disease. Neurol Ther. 2021 Dec;10(2):919-40. doi: 10.1007/s40120-021-00273-0

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

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

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

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

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

Davis KL, Meyers J, Zhao Z, McCollam PL, Murakami M. High-risk atherosclerotic cardiovascular disease in a real-world employed Japanese population: prevalence, cardiovascular event rates, and costs. J Atheroscler Thromb. 2015 Dec 1;22(12):1287-304. doi: 10.5551/jat.28852

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

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.

Norquist JM, Girman C, Fehnel S, Demuro-Mercon C, Santanello N. Choice of recall period for patient-reported outcome (PRO) measures: criteria for consideration. Qual Life Res. 2012 Aug 1;21(6):1016-20.

Launois R, Le Moine JG, Lozano FS, Mansilha A. Construction and international validation of CIVIQ-14 (a short form of CIVIQ-20), a new questionnaire with a stable factorial structure. Qual Life Res. 2012 Aug;21(6):1051-8. doi: 10.1007/s11136-011-0008-3

McKenna SP, Wilburn J, Twiss J, Ben-L'amri M, Kemp K, Campbell S. Crohn's disease: symptoms, functional limitations and quality of life. Poster presented at the 19th Annual Conference of the International Society for Quality of Life Research (ISOQOL); November 2012. Budapest, Hungary. [abstract] Qual Life Res. 2012; 21(1):103. doi: 10.1007/s11136-012-0248-x

Bell C, McLeod LD, Nelson LM, Fehnel SE, Zografos LJ, Bowers B. Development and psychometric evaluation of a new patient-reported outcome instrument measuring the functional impact of insomnia. Qual Life Res. 2011 Nov 1;20(9):1457-68.

Swartz RJ, Schwartz C, Basch E, Cai l, Fairclough DL, McLeod L, Mendoza TR, Rapkin B. The king's foot of patient-reported outcomes: current practices and new developments for the measurement of change. Qual Life Res. 2011 Oct 1;20(8):1159-67.

McKenna SP, Meads DM, Doward LC, Twiss J, Pokrzywinski R, Revicki D, Hunter CJ, Glendenning GA. Development and validation of the living with chronic obstructive pulmonary disease questionnaire. Qual Life Res. 2011 Sep 1;20(7):1043-52.

Stull DE, van Hanswijck de Jonge P, Houghton K, Kocun C, Sandor DW. Development of a frequent heartburn index. Qual Life Res. 2011 Sep 1;20(7):1023-34.

Deal LS, Williams VSL, DiBenedetti DB, Fehnel SE. Development and psychometric evaluation of the endometriosis treatment satisfaction questionnaire. Qual Life Res. 2010 Aug 1;19(6):899-905.

Luciano JV, Ayuso-Mateos JL, Fernandez A, Aguado J, Serrano-Blanco A, Roca M, Haro JM. Utility of the twelve-item World Health Organization Disability Assessment Schedule II (WHO-DAS II) for discriminating depression "caseness" and severity in Spanish primary care patients. Qual Life Res. 2010 May;19(1):97-101.

Mirabelli MC, Zock JP, Bircher AJ, Jarvis D, Keidel D, Kromhout H, Norbäck D, Olivieri M, Plana E. Metalworking exposures and persistent skin symptoms in the ECRHS II and SAPALDIA 2 cohorts. Contact Dermatitis. 2009 May;60(5):256-63.

Revicki DA, Gnanasakthy A, Weinfurt K. Documenting the rationale and psychometric characteristics of patient reported outcomes for labeling and promotional claims: the PRO evidence dossier. Qual Life Res. 2007 May;16(4):717-23.

McKenna SP, Doughty N, Meads DM, Doward LC, Pepke-Zaba J. The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR): a measure of health-related quality of life and quality of life for patients with pulmonary hypertension. Qual Life Res. 2006 Feb 1;15(1):103-15.

McKenna SP, Whalley D, Dewar Al, Erdman RA, Kohlmann T, Niero M, Baro E, Cook SA, Crickx B. International development of the Parents' Index of Quality of Life in Atopic Dermatitis (PIQoL-AD). Qual Life Res. 2005 Feb 1;14(1):231-41.

Fehnel SE, Bann CM, Hogue SL, Kwong WJ, Mahajan SS. The development and psychometric evaluation of the motivation and energy inventory (MEI). Qual Life Res. 2004 Sep 1;13(7):1321-36.

Shah S, Sesti AM, Copley-Merriman K, Plante M. Quality of life terminology included in package inserts for US approved medications. Qual Life Res. 2003 Dec 1;12(8):1107-17.

McKenna SP, Doward LC, Whalley D, Tennant A, Emery P, Veale DJ. Validating the psoriatic arthritis quality of life (PSAQoL) instrument. Poster presented at the 10th Annual Conference of the International Society for Quality of Life Research (ISQOL); November 2003. [abstract] Qual Life Res. 2003 Nov; 12(7):777.

McKenna SP, Doughty N, Meads DM, Doward LC, Pepke-Zaba J. Health-related quality of life in pulmonary arterial hypertension: results from a postal survey. Poster presented at the 10th Annual Conference of the International Society for Quality of Life Research (ISQOL); November 2003. [abstract] Qual Life Res. 2003 Nov; 12(7):836.