Publications
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Paller AS, Siegfried EC, Marron SE, Clark M, Harris N, Kosa K, Qin S, Whalley D, Chao J, Bansal A, Chuang CC, Wang Z. Skin pain and sleep quality numeric rating scales for children aged 6 months to 5 years with atopic dermatitis. J Eur Acad Dermatol Venereol. 2025 Mar;39(3):e209-12. doi: 10.1111/jdv.20199
Blauvelt A, Reckleff J, Zhao Y, Clark M, Kosa K, Harris N, Esfandiari E, Martin S, Whalley D, Emma GY. Content evaluation of pruritus, skin pain, and sleep disturbance patient-reported outcome measures in adolescents and adults with moderate-to-severe atopic dermatitis: qualitative interviews. Br J Dermatol. 2025 Jan 24;192(2):247-60. doi: 10.1093/bjd/ljae346
Whalley D, Balp MM, Yarr S, Korver D, Sauchelli Toran S, Kohli R, Orfanos P. Psychometric evaluation of the urticaria activity score in chronic spontaneous urticaria. Poster presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S506. doi: 10.1016/j.jval.2024.10.3260
Sauchelli Toran S, Whalley D, Orfanos P, Kohli R, Balp MM. Clinical relevance of disease activity scores from the patient perspective in chronic spontaneous urticaria. Poster presented at the ISPOR Europe 2024; November 20, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S568. doi: 10.1016/j.jval.2024.10.3550
Sauchelli Toran S, Whalley D, Balp MM, Kohli R, Orfanos P. Content validity of the angioedema activity score from the perspective of adults with chronic spontaneous urticaria. Poster presented at the ISPOR Europe 2024; November 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S516-7. doi: 10.1016/j.jval.2024.10.3307
Blauvelt A, Reckleff J, Zhao Y, Clark M, Kosa K, Harris N, Esfandiari E, Martin S, Whalley D, Emma GY. Content evaluation of pruritus, skin pain and sleep disturbance patient-reported outcome measures for adolescents and adults with moderate-to-severe atopic dermatitis: qualitative interviews. Br J Dermatol. 2024 Oct 4. doi: 10.1093/bjd/ljae346
McCann E, Peterson KA, Whalley D, Qin S, Tilton ST, Kamat S, Sun X, Dellon ES. Psychometric evaluation of the Dysphagia Symptom Questionnaire for adults and adolescents with eosinophilic esophagitis. J Allergy Clin Immunol Glob. 2024 Jul 16;3(4):100302. doi: 10.1016/j.jacig.2024.100302
Paller AS, Marron SE, Whalley D, Nelson L, Qin S, Chao J, Bansal A, Chuang C, Wang Z. Clinically meaningful change threshold in health‐related quality of life among patients aged 6 months to 5 years with atopic dermatitis and their caregiver(s)/family. JEACP. 2024 Mar;3(1):253-7. doi: 10.1002/jvc2.290
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.
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.
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
Clinch S, Whalley D, Ahlers S, Klupp S, Chague J, Holt T, Asadska G, Nelson L, Levy C, Staunton H. Cross-sectional and longitudinal psychometric evaluation of the pediatric quality of life inventory generic core module in autism. Poster presented at the International Society for Autism Research (INSAR) 2023; May 5, 2023. Stockholm, Sweden.
Khan AH, Kosa K, De Prado Gomez L, Whalley D, Kamat S, Clark M. Content validation of patient-reported sleep measures and development of a conceptual model of sleep disturbance in patients with moderate-to-severe, uncontrolled asthma. Patient Relat Outcome Meas. 2023 Mar 23;14:57-71. doi: 10.2147/PROM.S392666
Whalley D, Morrison R, Balp MM, Joubert Y, McKenna SJ, Christen L, Naujoks C, Gardner DD, Dery E, Lacombe A. Adaptation of the urticaria patient daily diary for caregiver completion in pediatric chronic spontaneous urticaria. Poster presented at the ISPOR Europe 2022; November 8, 2022. Vienna, Austria. [abstract] Value Health. 2022 Dec 1; 25(12):S418. doi: 10.1016/j.jval.2022.09.2077
Paller AS, Yosipovitch G, Weidinger S, DiBenedetti D, Whalley D, Gadkari A, Guillemin I, Zhang H, Eckert L, Chao J, Bansal A, Chuang CC, Delevry D. Development, psychometric validation and responder definition of worst itch scale in children with severe atopic dermatitis. Dermatol Ther. 2022 Dec;12(12):2839-50. doi: 10.1007/s13555-022-00804-z
Marvel J, Goransson O, Clark M, Romano (DeMuro) C, Olayinka-Amao O, Whalley D, Crawford R, Brindicci C, Garg K, Kordy K, Everhard F, Patalano F, Roesler Z, Landles R, Naujoks C, Gutzwiller FS. Interactive tablet application for self-report of asthma symptoms and impacts in young children. Poster presented at the ERS International Congress 2022; September 6, 2022. Barcelona, Spain. [abstract] Eur Respir J. 2022 Sep 4; 60(Suppl 66):2127. doi: 10.1183/13993003.congress-2022.2127
Paller A, Siegried E, Marron SE, Clark M, Kosa K, Whalley D, Chao J, Bansal A, Sun Y, Chuang C, Wang Z. Development and validation of a caregiver-reported numeric rating scale for measuring sleep quality in children aged 6 months to <6 years with atopic dermatitis. Poster presented at the 2022 Society for Investigative Dermatology (SID) Annual Meeting; May 19, 2022. Portland, OR. [abstract] J Invest Dermatol. 2022 Aug; 142(8 supplement):S42. doi: 10.1016/j.jid.2022.05.256
Whalley D, Belongie K, Frangiosa T, Krasa H, Mladsi DM, Twiss J, Wolowacz S. Understanding the patient experience of erythropoietic protoporphyria and x-linked protoporphyria: a qualitative study. Poster presented at the ISPOR 2022 Conference; May 15, 2022. Washington, DC. [abstract] Value Health. 2022 Jun; 25(6 S1).
Khan AH, Reaney M, Guillemin I, Nelson L, Qin S, Kamat S, Mannent L, Amin N, Whalley D, Hopkins C. Development of Sinonasal Outcome Test (SNOT-22) domains in chronic rhinosinusitis with nasal polyps. Laryngoscope. 2022 May;132(5):933-41. doi: 10.1002/lary.29766
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
Han JK, Bachert C, Lee SE, Hopkins C, Heffler E, Hellings PW, Peters AT, Kamat S, Whalley D, Qin S, Nelson L, Siddiqui S, Khan AH, Li Y, Mannent LP, Guillemin I, Chuang CC. Estimating clinically meaningful change of efficacy outcomes in inadequately controlled chronic rhinosinusitis with nasal polyposis. Laryngoscope. 2022 Feb;132(2):265-71. doi: 10.1002/lary.29888
Simpson EL, de Bruin-Weller M, Bansal A, Chen Z, Nelson L, Whalley D, Prescilla R, Guillemin I, Delevry D. Definition of clinically meaningful within-patient changes in POEM and CDLQI in children 6 to 11 years of age with severe atopic dermatitis. Dermatol Ther. 2021 Aug;11(4):1415-22. doi: 10.1007/s13555-021-00543-7
Ervin CM, Whalley D, von Huth Smith L, Crawford R, Dine J, Fehnel SE. Development of the impact of weight on daily activities questionnaire: a patient-reported outcome measure. Clin Obes. 2020 Dec;10(6):e12387. doi: 10.1111/cob.12387
Whalley D, Twiss J, Doward L, Balp MM, Brass C, Tietz A, Loeffler J, Lopez P, Lawitz EJ, Sanyal AJ. A novel patient-reported outcome measure indicates low burden of treatment among patients with non-alcoholic steatohepatitis: interim results from a phase 2 trial of tropifexor. Poster presented at the AASLD 2020 annual meeting; November 13, 2020. Boston, MA. [abstract] Hepatology. 2020 Oct 1; 72(S1):1005A. doi: 10.1002/hep.31579
Doward L, Twiss J, Whalley D, Balp MM, Brass C, Loeffler J, Cryer DR, Cai J, Lopez P, Lawitz EJ, Anstee QM, Sanyal AJ. Development of NASH-CHECK: a new patient-reported outcome measure for NASH. Poster presented at the AASLD 2020 annual meeting; November 13, 2020. Boston, MA. [abstract] Hepatology. 2020 Oct 1; 72(S1):1014A-5A. doi: 10.1002/hep.31579
Taylor PC, Betteridge N, Brown TM, Woolcott J, Kivitz AJ, Zerbini C, Whalley D, Olayinka-Amao O, Chen C, Dahl P, Ponce de Leon D, Gruben D, Fallon L. Treatment mode preferences in rheumatoid arthritis: moving toward shared decision-making. Patient Prefer Adherence. 2020 Jan 20;14:119-31. doi: 10.2147/PPA.S220714
Walley D, Twiss J, Doward L, Balp MM, Brass C, Loeffler J, Lopez P, Cai J, Cryer D, Anstee Q, Sanyal A. Patient-reported symptoms and impact in nonalcoholic steatohepatitis: an evaluation of the NASH-CHECK, a novel PROM in NASH. Poster presented at the EASL: The Digital International Liver Congress; August 27, 2020. Digital. [abstract] J Hepatol. 2020 Jan; 73:S422-3. doi: 10.1016/S0168-8278(20)33053-1
Twiss J, Whalley D, Doward L, Balp MM, Brass C, Lopez P, Loeffler J, Cai J, Cryer D, Sanyal AJ, Anstee QM. Psychometric evaluation of NASH-CHECK, a patient-reported outcome measure for Nonalcoholic Steatohepatitis. Poster presented at the ISPOR 2019 European Conference; November 6, 2019. Copenhagen, Denmark. [abstract] Value Health. 2019 Dec; 22(S3).
Simpson EL, de Bruin-Weller M, Eckert L, Whalley D, Guillemin I, Reaney M, Chen Z, Nelson L, Qin S, Bansal A, Gadkari A. Responder threshold for Patient-Oriented Eczema Measure (POEM) and Children's Dermatology Life Quality Index (CDLQI) in adolescents with atopic dermatitis. Dermatol Ther. 2019 Dec;9(4):799-805. doi: 10.1007/s13555-019-00333-2
Doward L, Svedsater H, Whalley D, Crawford R, Leather D, Lay-Flurrie J, Bosanquet N. A descriptive follow-up interview study assessing patient-centred outcomes: Salford Lung Study in Asthma (SLS Asthma). NPJ Prim Care Respir Med. 2019 Aug 15;29(1):31. doi: 10.1038/s41533-019-0142-x.
Whalley D, Svedsater H, Doward L, Crawford R, Leather D, Lay-Flurrie J, Bosanquet N. Follow-up interviews from The Salford Lung Study (COPD) and analyses per treatment and exacerbations. NPJ Prim Care Respir Med. 2019 May 9;29(1):20. doi: 10.1038/s41533-019-0123-0
Harrington M, Whalley D, Twiss J, Rushton R, Martin S, Huynh L, Yang H. Insights into the natural history of metachromatic leukodystrophy from interviews with caregivers. Orphanet J Rare Dis. 2019 Apr 29;14(1):89. doi: 10.1186/s13023-019-1060-2
Taylor PC, Betteridge N, Brown TM, Woolcott J, Kivitz AJ, Zerbini CAF, Whalley D, Olayinka-Amao O, Chen C, Dahl P, Ponce de Leon D, Gruben D, Fallon L. Treatment modes in rheumatoid arthritis: moving toward shared decision making. Poster presented at the 2018 ACR/ARHP Annual Meeting; October 23, 2018. Chicago, IL.
Harrington M, Whalley D, Twiss J, Rushton R, Martin S, Huynh L, Yang H. Metachromatic leukodystrophy and caregiver perspectives: understanding the natural history of the disease from interviews with caregivers. Poster presented at the 14th Annual WORLDSymposium; February 6, 2018. San Diego, CA.
Doward L, Svedsater H, Whalley D, Crawford R, Leather D, Lay-Flurrie J, Bosanquet N. Salford Lung Study in chronic obstructive pulmonary disease (SLS COPD): follow-up interviews on patient-centred outcomes. NPJ Prim Care Respir Med. 2017 Dec 15;27(1):66. doi: 10.1038/s41533-017-0066-2
Hauber AB, Obi EN, Price MA, Whalley D, Chang CL. Quantifying the relative importance to patients of avoiding symptoms and outcomes of heart failure. Curr Med Res Opin. 2017 Sep;33(11):2027-38. doi: 10.1080/03007995.2017.1355782
Svedsater H, Doward L, Whalley D, Crawford R, Leather D, Lay-Flurrie J, Bosanquet N. Salford Lung Study in Chronic Obstructive Pulmonary Disease (SLS COPD): follow-up interviews on patient-centered outcomes. Poster presented at the 2017 ISPOR 22nd Annual International Meeting; May 23, 2017. Boston, MA. [abstract] Value Health. 2017 May; 20(5):A205.
Whalley D, Petigara T, Rasouliyan L, Tobe K, Tunceli K. Early patient experiences with montelukast orally disintegrating tablets in Japan: a cross-sectional survey of treatment satisfaction in patients with asthma and/or allergic rhinitis. Curr Med Res Opin. 2017 Feb;33(2):215-23. doi: 10.1080/03007995.2016.1251891
Hauber AB, Obi EN, Price MA, Whalley D, Chang CL. Patients' self-reported value of avoiding key heart failure outcomes differs based on disease knowledge. Poster presented at the 2016 HFSA 20th Annual Scientific Meeting; September 17, 2016. Orlando, FL.
Zografos LJ, Andrews E, Whalley D, Petraro P, Vassilev Z. Use of cognitive testing to optimize questionnaire wording and mode of administration in the evaluation of risk minimization activities. Poster presented at the 32nd ICPE International Conference on Pharmacoepidemiology & Therapeutic Risk Management; August 27, 2016. Dublin, Ireland. [abstract] Pharmacoepidemiol Drug Saf. 2016 Aug; 25(Suppl 3):319-20.
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
Whalley D, Hauber AB, Crawford SR, Posner J, Doward L, Levitan B, Hemels M, Valgardsson VS. Patients' priorities for treatment in moderate to severe COPD. Poster presented at the 2015 ISPOR 18th Annual European Congress; November 2015. Milan, Italy.
Whalley D, Hauber AB, Crawford SR, Posner J, Doward L, Levitan B, Hemels M, Valgardsson VS. Patients' priorities for treatment in severe asthma. Poster presented at the 2015 ISPOR 18th Annual European Congress; November 2015. Milan, Italy.
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
Whalley D, Luquiens A, Crawford SR, Laramée P, Doward LC, Price MA, Hawken N, Dorey J, Owens L, Llorca PM, Falissard B, Aubin HJ. The patient experience of alcohol use disorder. Poster presented at the 2014 ISPOR 17th Annual European Congress; November 2014. Amsterdam.
Whalley D, Crawford SR, Laramée P, Higuchi S, Hao W, Kim S-G, Luquiens A, Aubin HJ. Cultural adaptation of the alcohol quality of life scale for use in Japan, China, and Korea. Poster presented at the 2014 ISPOR 17th Annual European Congress; November 2014. Amsterdam, The Netherlands.
Small N, Bower P, Chew-Graham CA, Whalley D, Protheroe J. Patient empowerment in long-term conditions: development and preliminary testing of a new measure. BMC Health Serv Res. 2013 Jul 8;13:Article N.
Roskell N, Mendelson E, Whalley D, Knight CJ. Using a condition-specific measure of patient-reported outcomes to derive utilities in myelofibrosis. Poster presented at the 2012 ISPOR 17th Annual International Meeting; June 7, 2012. Washington, DC. [abstract] Value Health. 2012 Jun; 15(4):A224-5.