Publications

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

Displaying 101 through 150 of 1477 publications.

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

Gonzalo JD, Hamilton M, DeWaters AL, Munyon R, Miller E, Wolf H, Wolpaw DR, Thompson BM. Implementation and evaluation of an interprofessional health systems science professional development program. Acad Med. 2023 Jun 1;98(6):703-8. doi: 10.1097/ACM.0000000000005144

Doma R, Gold A, Gregg M, Brouwer ES, Rudell K. A secondary analysis of the cross-cultural validation of multi-dimensional postpartum health PROMs, and suggestions for improving their validity and administration. Poster presented at the ISPOR 2023; May 7, 2023. Boston, MA. [abstract] Value Health. 2023 Jun; 26(6 Supplement):S189. doi: 10.1016/j.jval.2023.03.1021

Gnanasakthy A, Levy C, Norcross L, Doward L, Winnette R. A review of labeling based on patient reported outcome endpoints for new oncology drugs approved by the European Medicines Agency (2017-2021). Value Health. 2023 Jun;26(6):893-901. doi: 10.1016/j.jval.2023.01.017

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

DiBenedetti D, Huang M-Y, Kosa K, Suthoff E, Bonthapally V, Lasser R, Pollack M, Doherty J, Mak C, Cutler AJ, Mattingly GW. Assessing individuals' experiences with zuranolone for major depressive disorder: qualitative interviews with participants from the open-label shoreline study. Poster presented at the 2023 ASCP Annual Meeting; May 31, 2023. Miami Beach, FL.

Hill NL, Bratlee-Whitaker E, Jang H, Bhargava S, Sillner AY, Do J, Mogle J. Patient-provider communication about cognition and the role of memory concerns: a descriptive study. BMC geriatr. 2023 May 31;23(1):342. doi: 10.1186/s12877-023-04053-3

Norman KS, Zeleznik H, Wing S, Panghetti S, Szymusiak B, Burns S, Irrgang J. Development of a preoperative risk stratification tool for total shoulder arthroplasty for use in rehabilitation settings. Poster presented at the American Physical Therapy Association, Combined Sections Meeting; May 25, 2023. San Diego, CA.

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

Feghali PT, Iwamoto BK, Triplett OM, Rockwood NJ, Nelson TD, Van Dyk TR. A daily-level, within-person examination of emotion regulation as a mediator of the relationship between sleep and behavior in youth. Front Sleep. 2023 May 16;2:1154638. doi: 10.3389/frsle.2023.1154638

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.

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

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

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.

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

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

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

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

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

Bali V, Schelfhout J, Sher M, Peters A, Patel G, Mayorga M, (DeMuro) Romano C. Patient-reported symptoms, impacts, and treatment preferences in refractory or unexplained chronic cough: a qualitative study. Poster presented at the 2022 Advancing Allergy & Immunology Care (ACAAI) Annual Scientific Meeting; November 13, 2022. Louisville, KY.

Sauchelli S, Rogers PJ, Fry G, Hamilton-Shield JP. Preference for high carbohydrate foods does not change for children and adolescents in insulin-induced hypoglycemia. BMJ Open Diabetes Res Care. 2022 Nov 8;10(6). doi: 10.1136/bmjdrc-2022-003065