Publications
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Shirneshan E, Smith E, Shewale A, Stokes J, Kosa K, DiBenedetti D. Patient and caregiver experiences with ischaemic stroke: results from a qualitative study. Poster presented at the 11th European Stroke Organization Conference (ESOC) 2025; May 21, 2025. Helsinki, Finland.
Francis N, Arends S, Choi JC, Becker B, Edwards T, Sreih A, Christodoulou A, Strand V. Qualitative study on patient-reported outcome measures in patients with Sjögren's disease. Poster presented at the Congress of Clinical Rheumatology - East 2025; May 1, 2025. Destin, FL.
Francis N, Merola JF, Werth V, Choi JC, Becker B, Edwards T, Hobar C, Pomponi S, Strand V. Qualitative patient interview study in patients with systemic lupus erythematosus: patient reports of fatigue and skin-related symptoms. Poster presented at the Congress of Clinical Rheumatology - East 2025; May 1, 2025. Destin, FL.
Craig T, Baptist AP, Anderson J, Zaragoza-Urdaz RH, Burnette AF, Kelbel TE, Riedl MA, Vanegas A, Boyle K, Bartsch JL, Darden C, Brown TM, Schultz BG, Blair C, Sing K, Fox D, Juethner S. Hereditary angioedema: patient health care experiences within underrepresented racial and ethnic groups in the United States. Ann Allergy Asthma Immunol. 2025 Apr;134(4):465-473.e. doi: 10.1016/j.anai.2025.01.007
Percy AK, Ryther R, Marsh ED, Neul JL, Benke TA, Berry-Kravis EM, Feyma T, Lieberman DN, Ananth AL, Fu C, Buhrfiend C, Barrett A, Doshi D, Darwish M, An D, Bishop KM, Youakim JM. Results from the phase 2/3 DAFFODIL study of trofinetide in girls aged 2-4 years with Rett syndrome. Med. 2025 Feb 28. doi: 10.1016/j.medj.2025.100608
Kosa K, Vanegas A, Colavecchia C, Coulter J, Christopher SA, Fasano RM, Chou ST, Drachtman RA, Purdie DM, Baker CL, Meier ER. Qualitative interview study to characterize the treatment experiences of participants with sickle cell disease and assess perceptions of red blood cell transfusions. Poster presented at the American Society of Hematology (ASH) Annual Meeting & Exposition; December 8, 2024. San Diego, CA.
DiBenedetti D, Neme D, Pan-Petesch B, Willemze A, Wynn T, Kragh N, Wilson A. Patient experience with efanesoctocog alfa for severe hemophilia A: results from the XTEND-1 phase 3 clinical study exit interviews. Clin Ther. 2024 Dec;46(12):1016-23. doi: 10.1016/j.clinthera.2024.09.010
Brubaker M, Bratlee-Whitaker E, Brown TM, Partida A, Bucior I, Patel M, Clevenger C. Linguistic validation of the agitation in Alzheimer's screener for caregivers (AASC™), a novel tool based on the IPA definition of agitation in cognitive disorders. Poster presented at the 2024 International Psychogeriatric Association (IPA) Conference; September 25, 2024. Greenville, SC. [abstract] Int Psychogeriatr. 2024 Nov 27; 36(S1):79. doi: 10.1017/S1041610224001832
Haggerty A, Barrett A, Dine J, Iadeluca l, Smith AJ, Powell K. PARP inhibitors and maintenance treatment decision-making in advanced ovarian cancer: patient and clinician perspectives. Poster presented at the Society of Gynecologic Oncology 2024 Annual Meeting; March 16, 2024. San Diego, CA. [abstract] Gynecol Oncol. 2024 Nov; 190(Suppl 1):S395-6. doi: 10.1016/j.ygyno.2024.07.585
Bhushan NL, DeMuro Romano C, Gras-Najjar J, Reno J, Rockwood N, Quattrone W, Adams ET, Kelly B, McLeod L, Bhavnani SP, Bocell FD, Campbell M, Kontson K, Reasner D, Zhang C, Retzky S. Remote-use applications of the amyotrophic lateral sclerosis functional rating scale-revised clinical outcome assessment tool: a scoping review. Value Health. 2024 Oct;27(10):1454-65. doi: 10.1016/j.jval.2024.05.005
Shore S, Ervin C, Kosa K, Fehnel S, Salberg L, Butzner M, Heitner SB, Jacoby D, Saberi S. Qualitative interview study of patient-reported symptoms, impacts and treatment goals of patients with obstructive hypertrophic cardiomyopathy. BMJ Open. 2024 Sep 17;14(9):e081323. doi: 10.1136/bmjopen-2023-081323
Pandya AG, Amoloja T, Bibeau K, DiBenedetti D, Kosa K, Butler K, Kornacki D, Ezzedine K. Assessing participants' experiences with vitiligo from patient interviews. Dermatol Ther. 2024 Sep;14(9):2467-78. doi: 10.1007/s13555-024-01241-w
Clevenger C, Brubaker M, Jackson WC, Stroud J, Peschin S, Fehnel S, Brown TM, Bratlee-Whitaker E, Bucior I, Patel M, Grossberg G. Study protocol: quantitative evaluation of the Agitation in Alzheimer's screener for caregivers (AASC™), a novel tool for improving recognition of agitation in Alzheimer's dementia. Poster presented at the Alzheimer's Association International Conference (AAIC) 2024; July 28, 2024. Philadelphia, PA.
Martin S, Kosa K, Podgrabinska S, Garg A, Oral EA, Yildirim Simsir I, Brown RJ, Ozen S, Pagovich O, Srinivasan D, Sanchez RJ. Qualitative interviews describing the patient experience of individuals with generalized lipodystrophy enrolled in a clinical trial of mibavademab. Poster presented at the Endocrine Society (ENDO) 2024; June 1, 2024. Boston, MA.
Roth CL, Shoemaker AH, Ervin C, Norcross L, Fehnel S, Huber C, Scimia C, Abuzzahab MJ. Patient- and caregiver-reported experiences of hunger, weight, and energy in acquired yypothalamic obesity before and during setmelanotide treatment. Poster presented at the Endocrine Society (ENDO) 2024; June 1, 2024. Boston, MA.
Gaudiani L, Sikirica S, Hardin MB, Ervin CM, Goss DS, Kosa KM, Gopinathan S. Patient-reported burden of disease in diabetic peripheral neuropathic pain: learnings from in-depth patient interviews, sub-study of RELIEF-DPN 1. Poster presented at the American Diabetes Association's 84th Scientific Sessions; June 21, 2024. Orlando, FL. [abstract] Diabetes. 2024 Jun; 73(Suppl 1):484.
Yee KS, Lewis S, Evans E, Romano (DeMuro) C, Alexanderian D. Caregiver experiences and observations of intrathecal idursulfase-IT treatment in a phase 2/3 trial in pediatric patients with neuronopathic mucopolysaccharidosis II. Orphanet J Rare Dis. 2024 Mar 10;19(1):100. doi: 10.1186/s13023-024-03034-y
Blumenfeld A, Mordin M, Kosa K, Castro C, Stokes J, Shah D, Buse DC. Exploring the experience of neck pain in individuals with episodic migraine. Poster presented at the International Neurotoxin Association 7th International Conference (TOXINS 2024); January 17, 2024. Barcelona, Spain. Previously presented at the American Academy of Neurology (AAN) 2023 Annual Meeting.
Merola JF, Werth V, Choi JC, Becker B, Edwards T, Hobar C, Pomponi S, Strand V. Qualitative patient interview study in patients with systemic lupus erythematosus to assess patient perception of fatigue and skin-related symptoms. Poster presented at the American College of Rheumatology (ACR) Convergence 2024; November 17, 2024. Washington, DC. [abstract] Arthritis Rheumatol. 2024; 76(suppl 9).
Gibble TH, Kosa K, Basnyat B, Martin S, Moses R, Dubinsky M. Patient perspectives on symptoms and impacts in Crohn's disease: results from qualitative research. Poster presented at the European Crohn's and Colitis Organisation (ECCO) 2024; February 21, 2024. Stockholm, Sweden. [abstract] J Crohns Colitis. 2024 Jan; 18(Suppl 1):i265.
Gibble TH, Kosa K, Basnyat B, Martin S, Moses R, Dubinsky M. Cognitive debriefing of a patient-reported outcome measure for abdominal pain and loose stool frequency in Crohn's disease. Poster presented at the European Crohn's and Colitis Organisation (ECCO) 2024; February 21, 2024. Stockholm, Sweden. [abstract] J Crohns Colitis. 2024 Jan; 18(Suppl 1):i572.
Martin Nguyen A, La Rosa C, Cornell AG, Sher MR, Bernstein JA, Birring SS, DeMuro Romano C, Mayorga M, Milien M, Ervin C. Content validity of the Leicester Cough Questionnaire in adults with refractory or unexplained chronic cough: a qualitative interview study. Ther Adv Respir Dis. 2024 Jan;18:175346662. doi: 10.1177/17534666241274261
Arends S, Choi JC, Becker B, Edwards T, Sreih A, Christodoulou A, Strand V. Qualitative study on patient-reported outcome measures in patients with Sjogren's disease. Poster presented at the American College of Rheumatology (ACR) Convergence 2024; November 17, 2024. Washington, DC. [abstract] Arthritis Rheumatol. 2024; 76(suppl 9).
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.
Malec L, Carcao M, Mathias M, Kragh N, Dumont J, Willemze A, Bystricka L, Wilson A, DiBenedetti D. Experiences with efanesoctocog alfa: exit interviews with caregivers of previously treated patients with hemophilia a from the XTEND-Kids phase 3 clinical trial. Presented at the 65th ASH Annual Meeting & Exposition 2023; December 10, 2023. San Diego, CA.
Phillips T, Lugtenburg P, Kalsekar A, Mutebi A, Wang A, Blaedel J, Kosa K, Martin S, Sacchi M, Kilavuz N, Thieblemont C. Improvements in patient-reported outcomes in relapsed or refractory large b-cell lymphoma patients treated with epcoritamab. Clin Lymphoma Myeloma Leuk. 2023 Nov 27;24(3):e78-e87.e. doi: 10.1016/j.clml.2023.11.005
Clevenger C, Brubaker M, Patel M, Cummings J, Jackson WC, Stroud C, Pechin S, Bratlee-Whitaker E, Brown TM, Fehnel S, Grossberg G. One minute to recognition: the agitation in Alzheimer's screener for caregivers (AASC). Poster presented at the Gerontological Society of America's 2023 Annual Scientific Meeting; November 10, 2023. Tampa, FL.
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.
Wilson A, Kragh N, DiBenedetti D, Pan-Petesch B, Wynn T, Neme D, Willemze A. Patient experience with efanesoctocog alfa: results from the XTEND-1 phase 3 clinical trial exit interviews in patients with severe haemophilia A. Poster presented at the 75th Bleeding Disorders Conference (BDC); August 17, 2023. Baltimore, MD. Previously presented at the 16th Annual Congress of European Association for Haemophilia and Allied Disorders 2023.
Joly F, DasMahapatra P, DiBenedetti DB, Kosa K, Hill QA. Development of the cold agglutinin disease symptoms and impact questionnaire (CAD-SIQ). Eur J Haematol. 2023 Aug;111(2):211-9. doi: 10.1111/ejh.13984
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
Cella D, Wen PY, Ervin C, Vallow S, Gilloteau I, DeMuro C, Mordin M, Agostinho AC, Dine J. Understanding the patient experience and treatment benefits in patients with non–small-cell lung cancer with brain metastasis. Cancer Med. 2023 Jun 12;12(12):13637-48. doi: 10.1002/cam4.5975
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
Frederiksen KS, Crawford R, Hahn-Pedersen JH, Morrison R, Jeppesen R, Doward L, Weidner W. Insights from social media posts on the lived experience of alzheimer's disease. Poster presented at the ISPOR 2023 Conference; May 7, 2023. Boston, MA. [abstract] Value Health. 2023 Jun; 26(6 supplement):S352. doi: 10.1016/j.jval.2023.03.2395
Kosa K, Mutebi A, Wang A, Blaedel J, Sacchi M, Martin S. Improvements in symptoms, impact of treatment, and satisfaction with treatment among patients with relapsed or refractory b-cell non-hodgkin lymphoma treated with subcutaneous epcoritamab. Poster presented at the ISPOR 2023 Conference; May 8, 2023. Boston, MA. [abstract] Value Health. 2023 Jun; 26(6 supplement):S315. doi: 10.1016/j.jval.2023.03.1800
Crawford R, Sikirica S, Morrison R, Cappelleri JC, Russell-Smith A, Shah R, Chadwick H, Doward L. The patient experience of acute lymphoblastic leukemia and its treatment: social media review. JMIR Cancer. 2023 May 1;9:e39852.. doi: 10.2196/39852
Blumenfeld AM, Mordin M, Kosa KM, Castro CV, Stokes J, Shah D, Buse DC. Exploring the experience of neck pain in individuals with episodic migraine. Poster presented at the American Academy of Neurology (AAN) 2023 Annual Meeting; April 23, 2023. Boston, MA.
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
Wilson A, Kragh N, DiBenedetti D, Pan-Petesch B, Wynn T, Neme D, Willemze A. Patient experience with efanesoctocog alfa: results from the XTEND-1 phase 3 clinical trial exit interviews in patients with severe haemophilia A. Poster presented at the 16th Annual Congress of European Association for Haemophilia and Allied Disorders 2023; February 7, 2023. Manchester, England. [abstract] Haematologica. 2023 Feb 5; 29(S1):137-8. doi: 10.1111/hae.14715
Gerbasi ME, Goss D, Petrillo J, Nejati M, Lewis S. Patient experiences in essential tremor: mapping functional impacts to existing measures using qualitative research. Poster presented at the 2023 International Congress of Parkinson's Disease and Movement Disorders; August 27, 2023. Copenhagen, Denmark. [abstract] Mov Disord. 2023; 38(Suppl 1).
Romano C, Mayorga M, Ruiz-Guinazu J, Trudel GC, Fehnel S, McQuarrie K, Chan EKH, Katz EG. Evaluation of measures for the assessment of Covid-19 signs and symptoms in children and adolescents. Poster presented at the IDWeek 2022 Conference; October 21, 2022. Washington, DC. [abstract] Open Forum Infect Dis. 2022 Dec 15; 9(Issue Supplement_2):1061. doi: 10.1093/ofid/ofac492.902
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
Crawford R, Thompson A, Chang J, Morrison R, Doward L. Patient and caregiver insight into the impact of non-muscle-invasive bladder cancer and its treatments: a social media review. Poster presented at the ISPOR Europe 2022; November 7, 2022. Vienna, Austria. [abstract] Value Health. 2022 Dec 1; 25(12):S409. doi: 10.1016/j.jval.2022.09.2032
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
Trennery CL, Martin S, Kosa K, Demetriou L, Joshi AV. Patient perceptions of treatment success in uncomplicated urinary tract infection. Poster presented at the IDWeek 2022; October 22, 2022. Washington, DC. [abstract] Open Forum Infect Dis. 2022 Dec; 9(Suppl 2):S917-8. doi: 10.1093/ofid/ofac492.1861
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
Srivastava A, Rangarajan S, Ross C, Slota C, DiBenedetti D, Cano V, Andersson S, DasMahapatra P, Bartelt-Hofer J, Afonso M. Fitusiran reaches people's with hemophilia and their caregivers' treatment expectations: qualitative semi-structured interviews of participants of ATLAS-OLE Trial (Interim analysis). Poster presented at the American Society of Hematology (ASH) Annual Meeting 2022; December 11, 2022. New Orleans, LA. [abstract] Blood. 2022 Nov 15; 140(Suppl 1):7989-90. doi: 10.1182/blood-2022-166895
Joly F, DasMahapatra P, Su J, DiBenedetti D, Kosa K, Hill QA. Creation of a cold agglutinin disease (CAD) specific patient-reported outcome (PRO) symptom measure. Poster presented at the 84th Annual Meeting of the Japanese Society of Hematology; October 14, 2022. Fukuoka, Japan.
Paller A, Siegfried E, Marron SE, Clark M, Harris N, Quin S, Chao J, Bansal A, Sun Y, Chuang C, Wang Z. Development and validation of a caregiver reported numeric rating scale for measuring skin pain in children aged 6 months to 5 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 1; 142(8 supplement):S42. doi: 10.1016/j.jid.2022.05.257
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