Publications

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Displaying 201 through 250 of 2345 publications.

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.

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

McLeod LD, Rockwood NJ. Editorial - Comparability among modes of data collection for patient-reported outcome measures: opening the gates for faithful migration. Value Health. 2023 May;26(5):620-2. doi: 10.1016/j.jval.2023.03.010

Maeda-Chubachi T, McLeod L, Cartwright M. Meaningful change in children's dermatology life quality index (DLQI) and lesion counts in patients with molluscum contagiosum. Poster presented at the First International Societies for Investigative Dermatology (ISID2023) Meeting; May 10, 2023. Tokyo, Japan. [abstract] J Invest Dermatol. 2023 May; 143(5 Suppl):S105. doi: 10.1016/j.jid.2023.03.622

Ervin C, Norcross L, Mallya UG, Fehnel S, Mittleman RS, Webster M, Haqq AM, Haws RM. Interview-based patient- and caregiver-reported experiences of hunger and improved quality of life with setmelanotide treatment in bardet-biedl syndrome. Adv Ther. 2023 May;40(5):2394-411. doi: 10.1007/s12325-023-02443-y

Gilliam JR, George SZ, Norman KS, Hendren S, Sahu PK, Silfies SP. Mind-body exercise performed by physical therapists for reducing pain and disability in low back pain: a systematic review with meta-analysis. Arch Phys Med Rehabil. 2023 May;104(5):776-89. doi: 10.1016/j.apmr.2022.10.004.

Liao YJ, Jao YL, Berish D, Hin AS, Wangi K, Kitko L, Mogle J, Boltz M. A systematic review of barriers and facilitators of pain management in persons with dementia. J Pain. 2023 May;24(5):730-41. doi: 10.1016/j.jpain.2022.12.014

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

Gnanasakthy A, Norcross L, Clark M, Fitzgerald K. A review of patient-reported outcome considerations in oncologic drug advisory committee meetings (2016-2021). JCO Oncol Pract. 2023 May;19(5):e745-62. doi: 10.1200/OP.22.00774

Salis F, Bertuletti S, Bonci T, Caruso M, Scott K, Alcock L, Buckley E, Gazit E, Hansen C, Schwickert L, Aminian K, Becker C, Brown P, Carsin AE, Caulfield B, Chiari L, D'Ascanio I, Del Din S, Eskofier BM, Garcia-Aymerich J, Hausdorff JM, Hume EC, Kirk C, Kluge F, Koch S, Kuederle A, Maetzler W, Mico-Amigo EM, Mueller A, Neatrour I, Paraschiv-Ionescu A, Palmerini L, Yarnall AJ, Rochester L, Sharrack B, Singleton D, Vereijken B, Vogiatzis I, Della Croce U, Mazza C, Cereatti A. A multi-sensor wearable system for the assessment of diseased gait in real-world conditions. Front Bioeng Biotechnol. 2023 Apr 21;11:1143248. doi: 10.3389/fbioe.2023.1143248

Delgado-Ortiz L, Carsin AE, Merino J, Cobo I, Koch S, Goldberg X, Chevance G, Bosch de Basea M, Castano-Vinyals G, Espinosa A, Carreras A, Cortes Martinez B, Straif K, de Cid R, Kogevinas M, Garcia-Aymerich J. Changes in population health-related behaviors during a COVID-19 surge: a natural experiment. Ann Behav Med. 2023 Apr 5;57(3):216-26. doi: 10.1093/abm/kaac054

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

Wolf J, Garon EB, Groen HJM, Tan DSW, Gilloteau I, Le Mouhaer S, Hampe M, Cai C, Chassot-Agostinho C, Reynolds M, Sherif B, Heist RS. Patient-reported outcomes in capmatinib-treated patients with METex14-mutated advanced NSCLC: results from the GEOMETRY mono-1 study. Eur J Cancer. 2023 Apr;183:98-108. doi: 10.1016/j.ejca.2022.10.030

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

Halberstadt AL, Pincus AL, Mogle J, Ansell EB. Interpersonal complementarity and affect in daily life. Motiv Emotion. 2023 Apr;47(2):270-81. doi: 10.1007/s11031-022-10003-0

Davenport E, Zhou X, Wang J, Nunna S, Oberdhan D, Fernandes A, Mekahli D. Disease burden and disease progression of young adult patients with autosomal dominant polycystic kidney disease. Poster presented at the National Kidney Foundation 2023 Spring Clinical Meeting; April 11, 2023. Austin, TX. [abstract] Am J Kidney Dis. 2023 Apr 1; 81(4, Supple 1):S102. doi: 10.1053/j.ajkd.2023.01.349

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

Myer E, Patterson-Powell AM, Orsini M. Prevention and management of disruptive behavior in hospitalized veterans with dementia. Poster presented at the 2023 Duke Health Professions Education Day 7th Annual Education Research Poster Symposium; March 23, 2023. Durham, NC.

Gnanasakthy A, Crawford R, Qin S, Bender R, Doward L. Advanced patient-reported outcomes. Presented at the 2023 ISPOR Virtual Short Course Program; March 8, 2023.

Almeida DM, Rush J, Mogle J, Piazza JR, Cerino E, Charles ST. Longitudinal change in daily stress across 20 years of adulthood: results from the national study of daily experiences. Dev Psychol. 2023 Mar;59(3):515-23. doi: 10.1037/dev0001469

Chinthammit C, Mody R, Aguado J, Meyers J. Does weight loss in addition to HbA1c reduction impact health care costs in patients treated with T2D? a retrospective database analysis. Poster presented at the AMCP 2023 Annual Meeting; March 21, 2023. San Antonio, TX. [abstract] J Manag Care Pharm. 2023 Mar; 29(10-2):S27.

Guerra S, Ledford JG, Melen E, Lavi I, Carsin AE, Stern DA, Zhai J, Vidal M, Bustamante M, Addison KJ, Vallecillo RG, Billheimer D, Koppelman GH, Garcia-Aymerich J, Lemonnier N, Fito M, Dobano C, Kebede Merid S, Kull I, McEachan RRC, Wright J, Chatzi L, Kogevinas M, Porta D, Narduzzi S, Ballester F, Esplugues A, Zabaleta C, Irizar A, Sunyer J, Halonen M, Bousquet J, Martinez FD, Anto JM. Creatine kinase is decreased in childhood asthma. Am J Respir Crit Care Med. 2023 Mar 1;207(5):544-52. doi: 10.1164/rccm.202010-3746OC

DeMuro C, Finelli L, Lewis S, Williams V, Martin E, Phillips M, Saretsky T, Osborne R, Norquist J. Assessing the patient experience of respiratory syncytial virus infection: development of a patient-reported outcome measure. Health Qual Life Outcomes. 2023 Feb 28;21(1):20. doi: 10.1186/s12955-022-02066-x

Sauchelli S, Pickles T, Voinescu A, Choi H, Sherlock B, Zhang J, Colyer S, Grant S, Sundari S, Lasseter G. Public attitudes towards the use of novel technologies in their future healthcare: a UK survey. BMC Med Inform Decis Mak. 2023 Feb 22;23(1):38. doi: 10.1186/s12911-023-02118-2

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

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

Taylor MH, Leboulleux S, Panaseykin Y, Konda B, de La Fouchardiere C, Hughes BGM, Gianoukakis AG, Park YJ, Romanov I, Krzyzanowska MK, Garbinsky D, Sherif B, Pan JJ, Binder TA, Sauter N, Xie R, Brose MS. Health-related quality-of-life analyses from a multicenter, randomized, double-blind phase 2 study of patients with differentiated thyroid cancer treated with lenvatinib 18 or 24 mg/day. Cancer Med. 2023 Feb;12(4):4332-42. doi: 10.1002/cam4.5308

Moitra S, Carsin AE, Abramson MJ, Accordini S, Amaral AFS, Anto J, Bono R, Casas Ruiz L, Cerveri I, Chatzi L, Demoly P, Dorado-Arenas S, Forsberg B, Gilliland F, Gislason T, Gullon JA, Heinrich J, Holm M, Janson C, Jogi R, Gomez Real F, Jarvis D, Leynaert B, Nowak D, Probst-Hensch N, Sanchez-Ramos JL, Raherison-Semjen C, Siroux V, Guerra S, Kogevinas M, Garcia-Aymerich J. Long-term effect of asthma on the development of obesity among adults: an international cohort study, ECRHS. Thorax. 2023 Feb;78(2):128-35. doi: 10.1136/thoraxjnl-2021-217867

Cotter SP, Schwartz L, Strong TV, Bender RH, Fehnel S. The Prader-Willi syndrome anxiousness and distress behaviors questionnaire: development and psychometric validation. Value Health. 2023 Feb 1;26(2):243-50. doi: 10.1016/j.jval.2022.08.004

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

Bergerot C, Young Rha S, Pal S, Koralewski P, Stroyakovskiy D, Alekseev B, Parnis F, Castellano D, Lyun Lee J, Sunela K, Ciuleanu T, Heng D, Glen H, Wang J, Bennett L, Pan J, O'Hara K, Puente J. Health-related quality of life outcomes with two different starting doses of lenvatinib in combination with everolimus for previously treated renal cell carcinoma. Oncologist. 2023 Jan 18;28(1):59-71. doi: 10.1093/oncolo/oyac142

Forsythe E, Haws RM, Argente J, Beales P, Martos-Moreno GA, Dollfus H, Chirila C, Gnanasakthy A, Buckley BC, Mallya UG, Clement K, Haqq AM. Quality of life improvements following one year of setmelanotide in children and adult patients with Bardet-Biedl syndrome: phase 3 trial results. Orphanet J Rare Dis. 2023 Jan 16;18(1):12. doi: 10.1186/s13023-022-02602-4

Shayo MJ, Shayo P, Haukila KF, Norman K, Burke C, Ngowi K, Goode AP, Allen KD, Wonanji VT, Mmbaga BT, Bettger JP. Expanding access to rehabilitation using mobile health to address musculoskeletal pain and disability. Front Rehabil Sci. 2023 Jan 6;3:982175. doi: 10.3389/fresc.2022.982175

Lansdall CJ, McDougall F, Butler LM, Delmar P, Pross N, Qin S, McLeod L, Zhou X, Kerchner GA, Doody RS. Establishing clinically meaningful change on outcome assessments frequently used in trials of mild cognitive impairment due to Alzheimer's disease. J Prev Alzheimers Dis. 2023;10(1):9-18. doi: 10.14283/jpad.2022.102

Browning JC, Cartwright M, Thorla, Jr. I, Martin SA, Olayinka-Amao O, Maeda-Chubachi T. A patient-centered perspective of molluscum contagiosum as reported by B-SIMPLE4 clinical trial patients and caregivers: global impression of change and exit interview substudy results. Am J Clin Dermatol. 2023 Jan;24(1):119-33. doi: 10.1007/s40257-022-00733-9

Kim N, Brown TM, Burudpakdee C, Kanu C, Woodard K, Fehnel S, Morrison C, Nadglowski J, Nadolsky K, Kolotkin RL. Development of an assessment tool for completion by patients with overweight or obesity. Adv Ther. 2023 Jan;40(1):174-93. doi: 10.1007/s12325-022-02334-8

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).

Ridley M, Persson M. Promoting resilience in people with cleft lip and/or palate around the world. In: Interdisciplinary cleft care: global perspectives. San Diego: CA. Plural Publishing, Inc; 2023.

Persson MJ, Ridley M. Provision of psychosocial care in cleft lip and/or palate: A global context. In: Interdisciplinary cleft care: global perspectives. San Diego: CA. Plural Publishing, Inc; 2023.

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

Marsal JR, Urreta-Barallobre I, Ubeda-Carrillo M, Osorio D, Lumbreras B, Lora D, Fernandez-Felix BM, Oristrell G, Rodenas-Alesina E, Herrador L, Ballesteros M, Zamora J, Pijoan JI, Ribera A, Ferreira-Gonzalez I. Sample size requirement in trials that use the composite endpoint major adverse cardiovascular events (MACE): new insights. Trials. 2022 Dec 21;23(1):1037. doi: 10.1186/s13063-022-06977-4

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

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 64th ASH Annual Meeting and Exposition; December 11, 2022. New Orleans, LA.

Romano (DeMuro) C, Novak G, Choi J, Qin S, Henley D, Donohue M, Romano G, Raman R, Amariglio R, Aisen P, Sperling R. Assessing clinically meaningful functional outcomes in preclinical alzheimer's disease. Poster presented at the 15th Conference Clinical Trials Alzheimer's Disease 2022; November 29, 2022. San Francisco, CA. [abstract] J Prev Alzheimers Dis. 2022 Dec 3; 9(Supplement 1):S186-7.

Williams V, Romano (DeMuro) C, Clark M, Goss D, Naujoks C, Marvel J. Psychometric evaluation of a new electronic pediatric asthma symptom diary. Poster presented at the ISPOR Europe 2022; November 8, 2022. Vienna, Austria. [abstract] Value Health. 2022 Dec 1; 25(12):S428. doi: 10.1016/j.jval.2022.09.2130

Morrison R, Allas S, Crawford R, Tremel N, Weiss B, Robo C, Doward L. International adaptation and linguistic validation of the hypoparathyroidism daily diary of symptom experience (HPT-DD-SE) and the hypoparathyroidism life impact questionnaire (HPT-LIQ). 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.2022.09.2079

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

Shim A, Trone D, Reynolds M, Odom D, Sherif B, Stopatschinskaja S. Patient reported outcomes (PRO) from phase 2 registrational trial of repotrectinib in patients with ROS1-positive advanced or metastatic non-small cell lung cancer (TRIDENT-1). Poster presented at the ISPOR Europe 2022; November 6, 2022. Vienna, Austria. [abstract] Value Health. 2022 Dec 1; 25(12):S421. doi: 10.1016/j.jval.2022.09.2093

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