Illustrative Publications

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Chan YN, Cho Y, Hirschey R, Piepmeier A, Bender CM, Anderson RA, Foster MC, Bryant AL. (2024). Cancer-related cognitive impairment in older adults with acute myeloid leukemia treated with hypomethylating agents and venetoclax chemotherapy: a longitudinal descriptive study. Support Care Cancer, 32(7), 485. https://doi.org/10.1007/s00520-024-08673-2

Coles T, Fillipo R, Plyler K, Hernandez A, Henke DM, Arizmendi C, Cantrell S, Lagoo-Deenadayalan S, Rory Goodwin C, LeBlanc TW, Horodniceanu EG, Bhatnagar V, Reeve BB, Weinfurt K. (2024). Facets of physical function assessed by patient-reported outcome measures in oncology research. Qual Life Res, 33(7), 1819-1828. https://doi.org/10.1007/s11136-024-03640-0

Fillipo R, Leblanc TW, Plyler KE, Arizmendi C, Henke DM, Coles T. (2024). How do patients interpret and respond to a novel patient-reported eastern cooperative oncology group performance status (ECOG)? Qual Life Res, 33(9), 2375-2385. https://doi.org/10.1007/s11136-024-03715-y

Coles TM, Lucas N, McFatrich M, Henke D, Ridgeway JL, Behnken EM, Weinfurt K, Reeve BB, Corneli A, Dunlay SM, Spertus JA, Lin L, Piña IL, Bocell FD, Tarver ME, Dohse H, Saha A, Caldwell B. (2023). Investigating gender-based differential item functioning on the Kansas City Cardiomyopathy Questionnaire (KCCQ) using qualitative content analysis. Qual Life Res, 32(3), 841-852. https://doi.org/10.1007/s11136-022-03276-y

Tan KR, Chan YN, Iadonisi K, Poor E, Betancur S, Jung A, Sagester K, Coppola S, Pergolotti M, Kent EE, Schwartz T, Richardson D, Bryant AL. (2023). Perspectives of caregivers of older adults with acute myeloid leukemia during initial hypomethylating agents and venetoclax chemotherapy. Support Care Cancer, 31(1), 95. https://doi.org/10.1007/s00520-022-07565-7

Zigler CK, Lucas N, McFatrich M, Gordon KL, Jones HN, Berent A, Panagoulias J, Evans P, Reeve BB. (2023). Exploring Communication Ability in Individuals With Angelman Syndrome: Findings From Qualitative Interviews With Caregivers. Am J Intellect Dev Disabil, 128(3), 185-203. https://doi.org/10.1352/1944-7558-128.3.185

Poor E, Chan YN, Iadonisi K, Tan K, Leak Bryant A. (2022). Exploring Experiences of Bereaved Caregivers of Older Adult Patients With Acute Myeloid Leukemia. Clin J Oncol Nurs, 26(2), 135-139. https://doi.org/10.1188/22.Cjon.135-139

Arizmendi C, Zhu Y, Khan M, Gable J, Reeve BB, King-Kallimanis B, Bell J. (2024). The FACT-GP5 as a global tolerability measure: responsiveness and robustness to missing assessments. Qual Life Res, 33(10), 2869-2880. https://doi.org/10.1007/s11136-024-03740-x

Coles TM, Lin L, Weinfurt K, Reeve BB, Spertus JA, Mentz RJ, Piña IL, Bocell FD, Tarver ME, Saha A, Caldwell B. (2023). Investigating Potential Gender-Based Differential Item Functioning for Items in the Kansas City Cardiomyopathy Questionnaire (KCCQ) Physical Limitations Domain. Appl Res Qual Life, 18(4), 1785-1798. https://doi.org/10.1007/s11482-023-10162-3

Reeve BB, Lucas N, Chen D, McFatrich M, Jones HN, Gordon KL, Leiva LZ, Lin L, Coenraads M, von Hehn J, Carpenter RL, Marsh ED, Zigler CK. (2023). Validation of the Observer-Reported Communication Ability (ORCA) measure for individuals with Rett syndrome. Eur J Paediatr Neurol, 46, 74-81. https://doi.org/10.1016/j.ejpn.2023.07.007

Zigler CK, Lin L, McFatrich M, Lucas N, Gordon KL, Jones HN, Berent A, Panagoulias J, Evans P, Reeve BB. (2023). Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome. Am J Intellect Dev Disabil, 128(3), 204-218. https://doi.org/10.1352/1944-7558-128.3.204

Freyer DR, Lin L, Mack JW, Maurer SH, McFatrich M, Baker JN, Jacobs SS, Lucas N, Withycombe JS, Tomlinson D, Villabroza KR, Waldron MK, Hinds PS, Reeve BB. (2022). Lack of Concordance in Symptomatic Adverse Event Reporting by Children, Clinicians, and Caregivers: Implications for Cancer Clinical Trials. J Clin Oncol, 40(15), 1623-1634. https://doi.org/10.1200/jco.21.02669

Hernandez ML, Lucas N, Mann C, Lin L, Burbank AJ, Brown J, Sims M, Ivins S, Cunningham A, Maciag MC, Akar-Ghibril N, Bennett AV, Phipatanakul W, Reeve BB. (2021). Association of step count with PROMIS pediatric health-related quality of life measures in children and adolescents with persistent asthma. J Allergy Clin Immunol, 9(6), 2492-2494. https://doi.org/10.1016/j.jaip.2021.01.046

Reeve BB, McFatrich M, Mack JW, Maurer SH, Jacobs SS, Freyer DR, Withycombe JS, Baker JN, Castellino SM, Lin L, Lucas NR, Hinds PS. (2020). Validity and Reliability of the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events. J Natl Cancer Inst, 112(11), 1143-1152. https://doi.org/10.1093/jnci/djaa016

Reeve BB, McFatrich M, Mack JW, Pinheiro LC, Jacobs SS, Baker JN, Withycombe JS, Lin L, Mann CM, Villabroza KR, Hinds PS. (2020). Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment. Pediatr Blood Cancer, 67(4), e28160. https://doi.org/10.1002/pbc.28160

Lewis EF, Coles TM, Lewis S, Nelson LM, Barrett A, Romano CD, Stull DE, Turner SJ, Chang CG. (2019). Development, psychometric evaluation, and initial feasibility assessment of a symptom tracker for use by patients with heart failure (HFaST). J Patient Rep Outcomes, 3(1), 26. https://doi.org/10.1186/s41687-019-0113-6

Burbank AJ, Lucas N, Lin L, Hernandez ML, Reeve BB. (2023). Measuring PROMIS Asthma Impact cutpoint scores for identifying uncontrolled asthma in children. J Allergy Clin Immunol Pract, 11(12), 3783-3785. https://doi.org/10.1016/j.jaip.2023.08.045

Weinfurt KP. (2019). Clarifying the Meaning of Clinically Meaningful Benefit in Clinical Research: Noticeable Change vs Valuable Change. JAMA, 322(24), 2381-2382. https://doi.org/10.1001/jama.2019.18496

Zigler CK, Coles T. (2024). Clinical Outcome Assessments Are Never "Validated". Value Health, 27(11), 1494-1496. https://doi.org/10.1016/j.jval.2024.07.006

Coles T. (2023). Supporting Clinical Decision-Making in Emergency Departments With Patient-Reported Outcome Measures. JACC Adv, 2(3), 100339. https://doi.org/10.1016/j.jacadv.2023.100339

Coles TM, Lin L, Weinfurt K, Reeve BB, Spertus JA, Mentz RJ, Piña IL, Bocell FD, Tarver ME, Henke DM, Saha A, Caldwell B, Spring S. (2023). Do PRO Measures Function the Same Way for all Individuals With Heart Failure? J Card Fail, 29(2), 210-216. https://doi.org/10.1016/j.cardfail.2022.05.017

Reeve BB, Hernandez A, Freyer DR, Linder LA, Embry L, Leahy AB, Baker JN, Mack JW, McFatrich M, Henke DM, Mowbray C, Jacobs SS, Maurer SH, Gold SH, Hinds PS. (2023). Capturing the young child's reports of cancer treatment tolerability: Does our practice reflect an assumption that they cannot report? Pediatr Blood Cancer, 70(1), e30028. https://doi.org/10.1002/pbc.30028

Weinfurt KP. (2022). Constructing and evaluating a validity argument for a performance outcome measure for clinical trials: An example using the Multi-luminance Mobility Test. Clin Trials, 19(2), 184-193. https://doi.org/10.1177/17407745211073609

Weinfurt KP, Reeve BB. (2022). Patient-Reported Outcome Measures in Clinical Research. JAMA, 328(5), 472-473. https://doi.org/10.1001/jama.2022.11238

Weinfurt KP. (2021). Constructing arguments for the interpretation and use of patient-reported outcome measures in research: an application of modern validity theory. Qual Life Res, 30(6), 1715-1722. https://doi.org/10.1007/s11136-021-02776-7

Weinfurt KP. (2020). Vanquishing false idols, then and now. Science, 367(6484), 1312-1312. https://doi.org/doi:10.1126/science.aba5802

Weinfurt KP. (2019). Viewing assessments of patient-reported heath status as conversations: Implications for developing and evaluating patient-reported outcome measures. Qual Life Res, 28(12), 3395-3401. https://doi.org/10.1007/s11136-019-02285-8

Outcome Measures: A Systematic Review of Quantitative Methods. Value Health, 27(4), 518-526. https://doi.org/10.1016/j.jval.2024.01.016

Soares Ferreira Junior A, Pinheiro Maux Lessa M, Kaplan S, Coles TM, Terrell DR, Onwuemene OA. (2023). Patient-Reported Outcome Measures in Patients with Thrombotic Thrombocytopenic Purpura: A Systematic Review of the Literature. J Clin Med, 12(15). https://doi.org/10.3390/jcm12155155

Coles T, Plyler K, Hernandez A, Fillipo R, Henke DM, Arizmendi C, Lagoo-Deenadayalan S, Goodwin CR, LeBlanc TW, Horodniceanu EG, Bhatnagar V, Reeve BB, Weinfurt KP. (2024). What facets of physical function are most important to adults diagnosed with cancer? Qual Life Res, 33(7), 1829-1839. https://doi.org/10.1007/s11136-024-03654-8

Reeve BB, Graves KD, Lin L, Potosky AL, Ahn J, Henke DM, Pan W, Fall-Dickson JM. (2023). Health-related quality of life by race, ethnicity, and country of origin among cancer survivors. J Natl Cancer Inst, 115(3), 258-267. https://doi.org/10.1093/jnci/djac230

Wang S, Arizmendi CJ, Blalock DV, Chen D, Lin L, Thissen D, Huang IC, DeWalt DA, Reeve BB. (2023). Health-related quality of life profiles in adolescents and young adults with chronic conditions. Qual Life Res, 32(11), 3171-3183. https://doi.org/10.1007/s11136-023-03463-5

Wang S, Arizmendi CJ, Chen D, Lin L, Blalock DV, Huang IC, Thissen D, DeWalt DA, Pan W, Reeve BB. (2023). Applying latent profile analysis to identify adolescents and young adults with chronic conditions at risk for poor health-related quality of life. J Biopharm Stat, 1-14. https://doi.org/10.1080/10543406.2023.2210684

Coles T, Plyler K, Hernandez A, Fillipo R, Henke DM, Arizmendi C, Lagoo-Deenadayalan S, Goodwin CR, LeBlanc TW, Horodniceanu EG, Bhatnagar V, Reeve BB, Weinfurt KP. (2024). What facets of physical function are most important to adults diagnosed with cancer? Qual Life Res, 33(7), 1829-1839. https://doi.org/10.1007/s11136-024-03654-8

Coles T, McFatrich M, Ding H, Lucas N, Daniell E, Swaminathan A, Schelfhout J, Johnson R. (2024). Quality of Life in Adults with Chronic Cough: A Mixed Methods Study Informing the Development of a Quantitative Patient Preference Study. Patient, 17(3), 253-262. https://doi.org/10.1007/s40271-023-00654-7

Gonzalez JM, Johnson FR, Finkelstein E. (2024). To pool or not to pool: Accounting for task non-attendance in subgroup analysis. J Choice Model, 51, 100487. https://doi.org/https://doi.org/10.1016/j.jocm.2024.100487

Hung A, Yang JC, Wallace M, Zwischenberger BA, Vemulapalli S, Mentz RJ, Thoma E, Goates S, Lewis J, Strong S, Reed SD. (2024). Patient Risk-Benefit Preferences for Transcatheter Versus Surgical Mitral Valve Repair. J Am Heart Assoc, 13(6), e032807. https://doi.org/10.1161/jaha.123.032807

Ozdemir S, Chaudhry I, Malhotra C, Teo I, Finkelstein EA. (2024). Goals of Care Among Patients With Advanced Cancer and Their Family Caregivers in the Last Years of Life. JAMA Netw Open, 7(4), e245866. https://doi.org/10.1001/jamanetworkopen.2024.5866

Ramakrishnan C, Widjaja N, Malhotra C, Finkelstein E, Khan BA, Ozdemir S. (2024). Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease. BMC Nephrol, 25(1), 6. https://doi.org/10.1186/s12882-023-03434-5

Reed SD, Harrington JL, Morin DP, Saba SF, Montgomery JA, Harrison RW, Frisch DR, Viethen T, Tamm M, Xiao J, Mundl H, Coppolecchia R, Yang J-C, Wallace MJ, Gonzalez JM, Patel MR. (2024). Participant Engagement and Preference Study for Clinical Outcomes Associated With Atrial Fibrillation. JACC: Advances, 3(12_Part_1), 101370. https://doi.org/doi:10.1016/j.jacadv.2024.101370

Reed SD, Sutphin J, Wallace MJ, Gonzalez JM, Yang JC, Reed Johnson F, Tsapatsaris J, Tarver ME, Saha A, Chen AL, Gebben DJ, Malone M, Farb A, Babalola O, Rorer EM, Parikh SA, Simons JP, Jones WS, Krucoff MW, Secemsky EA, Corriere MA. (2024). Quantifying patients' preferences on tradeoffs between mortality risk and reduced need for target vessel revascularization for claudication. Vasc Med, 29(6), 675-683. https://doi.org/10.1177/1358863x241290233

Reed SD, Yang J-C, Wallace MJ, Sutphin J, Johnson FR, Ozdemir S, Delgado S, Goates S, Harbert N, Lo M, Rajagopalan B, Ip JE, Al-Khatib SM. (2024). Patient preferences for features associated with leadless versus conventional transvenous cardiac pacemakers. medRxiv, 2024.2004.2019.24306110. https://doi.org/10.1101/2024.04.19.24306110

Wallace MJ, Weissler EH, Yang JC, Brotzman L, Corriere MA, Secemsky EA, Sutphin J, Johnson FR, Marcos Gonzalez J, Tarver ME, Saha A, Chen AL, Gebben DJ, Malone M, Farb A, Babalola O, Rorer EM, Zikmund-Fisher BJ, Reed SD. (2024). Using Separate Single-Outcome Risk Presentations Instead of Integrated Multioutcome Formats Improves Comprehension in Discrete Choice Experiments. Med Decis Making, 44(6), 649-660. https://doi.org/10.1177/0272989x241258466

Fairchild AO, Reed SD, Gonzalez JM. (2023). Method for Calculating the Simultaneous Maximum Acceptable Risk Threshold (SMART) from Discrete-Choice Experiment Benefit-Risk Studies. Med Decis Making, 43(2), 227-238. https://doi.org/10.1177/0272989x221132266

Gonzalez Sepulveda JM, Johnson FR, Reed SD, Muiruri C, Hutyra CA, Mather RC, 3rd. (2023). Patient-Preference Diagnostics: Adapting Stated-Preference Methods to Inform Effective Shared Decision Making. Med Decis Making, 43(2), 214-226. https://doi.org/10.1177/0272989x221115058

Gonzalez Sepulveda JM, Yang JC, Reed SD, Lee TH, Ng X, Stothers S, Irony T, Ho M, Rothman JA, Badawy S, Rowley C, Little J, Shah NR, Li K, Telen MJ. (2023). Preferences for potential benefits and risks for gene therapy in the treatment of sickle cell disease. Blood Adv, 7(23), 7371-7381. https://doi.org/10.1182/bloodadvances.2023009680

Johnson FR, Fairchild A, Whittington D, Srivastava AK, Gonzalez JM, Huang L. (2023). How Does the Public Evaluate Vaccines for Low-Incidence, Severe-Outcome Diseases? A General-Population Choice Experiment. Patient, 16(2), 139-151. https://doi.org/10.1007/s40271-022-00602-x

Montano-Campos JF, Gonzalez JM, Rickert T, Fairchild AO, Levitan B, Reed SD. (2023). Use of Patient Preferences Data Regarding Multiple Risks to Inform Regulatory Decisions. MDM Policy Pract, 8(1), 23814683221148715. https://doi.org/10.1177/23814683221148715

Muiruri C, van den Broek-Altenburg EM, Bosworth HB, Cené CW, Gonzalez JM. (2023). A Quantitative Framework for Medication Non-Adherence: Integrating Patient Treatment Expectations and Preferences. Patient Prefer Adherence, 17, 3135-3145. https://doi.org/10.2147/ppa.S434640

Reeve BB, Graves KD, Lin L, Potosky AL, Ahn J, Henke DM, Pan W, Fall-Dickson JM. (2023). Health-related quality of life by race, ethnicity, and country of origin among cancer survivors. J Natl Cancer Inst, 115(3), 258-267. https://doi.org/10.1093/jnci/djac230

Shammas RL, Hung A, Mullikin A, Sergesketter AR, Lee CN, Reed SD, Fish LJ, Greenup RA, Hollenbeck ST. (2023). Patient Preferences for Postmastectomy Breast Reconstruction. JAMA Surg, 158(12), 1285-1292. https://doi.org/10.1001/jamasurg.2023.4432

Wang S, Arizmendi CJ, Blalock DV, Chen D, Lin L, Thissen D, Huang IC, DeWalt DA, Reeve BB. (2023). Health-related quality of life profiles in adolescents and young adults with chronic conditions. Qual Life Res, 32(11), 3171-3183. https://doi.org/10.1007/s11136-023-03463-5

Wang S, Arizmendi CJ, Chen D, Lin L, Blalock DV, Huang IC, Thissen D, DeWalt DA, Pan W, Reeve BB. (2023). Applying latent profile analysis to identify adolescents and young adults with chronic conditions at risk for poor health-related quality of life. J Biopharm Stat, 1-14. https://doi.org/10.1080/10543406.2023.2210684