Illustrative Publications

Diverse family and Center for Health Measurement Logo

Patient Engagement

  1. Cobb EM, Meurer W, Harney D, Silbergleit R, Patrick-Lake B, Clark C, Gipson D, Barsan W. “Patient Engagement in Neurological Clinical Trials Design: A Conference Summary.” Clin Transl Sci. 2015; 8(6): 776-8. PMID: 26083566
  2. Corneli AL, Piwoz E, Bentley ME, Moses A, Nkhoma JR, Tohill BC, Adair L, Mtimuni B, Ahmed Y, Duerr A, Kazembe P, van der Horst C; UNC Project BAN Study Team. “Involving communities in the design of clinical trial protocols: the BAN Study in Lilongwe, Malawi.” Contemp Clin Trials. 2007; 28(1):59-67. PMID: 17000137
  3. Smith SK, Selig W, Harker M, Roberts JN, Hesterlee S, Leventhal D, Klein R, Patrick-Lake B, Abernethy AP. “Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey.” PLoS One, 2015 Oct 14; 10(10):e0140232. PMID: 26465328
  4. Terry SF, Patrick-Lake B. “Hearing voices: FDA seeks advice from patients.” Sci Transl Med. 2015 Nov 11; 7(313): 313ed12. doi: 10.1126/scitranslmed.aad5866. PMID: 26560354

Qualitative Research/Mixed Methods Research

  1. Corneli AL, Bentley ME, Sorenson JR, Henderson GE, van der Horst C, Moses A, Nkhoma JR, Tenthani L, Ahmed Y, Heilig CM, Jamieson DJ. “Using formative research to develop a context-specific approach to informed consent for clinical trials.” Journal of Empirical Research on Human Research Ethics. 2006 Dec; 1(4): 45-60 PMID: 19385837
  2. Corneli AL, McKenna K, Headley J, Ahmed K, Odhiambo J, Skhosana J, Wang M, Agot K.  “A descriptive analysis of perceptions of HIV risk and worry about acquiring HIV among FEM-PrEP participants who seroconverted in Bondo, Kenya and Pretoria, South Africa.” J Int AIDS Soc. 2014 Sep 8; 17(3 Suppl 2):19152. PMID: 25224613
  3. Corneli AL, Namey E, Ahmed K, Agot K, Skhosana J, Odhiambo J, Guest G.  “Motivations for Reducing Other HIV Risk-Reduction Practices if Taking Pre-Exposure Prophylaxis: Findings from a Qualitative Study Among Women in Kenya and South Africa.” AIDS Patient Care STDs, 2015 Sep; 29(9):503-9. PMID: 26196411
  4. Corneli AL, Perry B, McKenna K, Agot K, Ahmed K, Taylor J, Malamatsho F, Odhiambo J, Skhosana J, Van Damme L. “Participants’ explanations for non-adherence in the FEM-PrEP clinical trial.” JAIDS, 2016 Apr 1; 71(4):452-61. PMID: 26536315
  5. Reeve BB, McFatrich M, Pinheiro LC, Weaver MS, Sung L, Withycombe JS, Baker JN, Mack JW, Waldron MK, Gibson D, Tomlinson D, Freyer DR, Mowbray C, Jacobs S, Palma D, Martens CE, Gold SH, Jackson KD, Hinds PS. “Eliciting the child’s voice in adverse event reporting in oncology trials: Cognitive interview findings from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events initiative.” Pediatr Blood Cancer. 2017; 64(3). doi: 10.1002/pbc.26261. PMID: 27650708
  6. Reeve BB, Willis G, Shariff-Marco SN, Breen N, Williams DR, Gee GC, Alegria M, Takeuchi DT, Stapleton M, Levin KY. 2011. “Comparing cognitive interviewing and psychometric methods to evaluate a racial/ethnic discrimination scale.” Field Methods 23: 397-419. doi:10.1177/1525822X11416564

Psychometric Methods

  1. Weinfurt KP, Trucco SM, Willke RJ, Schulman KA. “Measuring agreement between patient and proxy responses to multidimensional health-related quality of life measures in clinical trials. An application of psychometric profile analysis.” J Clin Epidemiol. 2002 Jun; 55(6): 608-18.  PMID: 12063103
  2. Edelen MO, Reeve BB. “Applying item response theory (IRT) modeling to questionnaire development, evaluation, and refinement.” Qual Life Res. 2007; 16 Suppl 1:5-18. PMID: 17375372
  3. Reeve BB, Hays RD, Bjorner JB, Cook KF, Crane PK, Teresi JA, Thissen D, Revicki DA, Weiss DJ, Hambleton RK, Liu H, Gershon R, Reise SP, Lai JS, Cella D, Group PC. “Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS).” Med Care. 2007 May; 45(5 Suppl 1):S22-31. PMID: 17443115
  4. Reeve BB. “Item response theory modeling in health outcomes measurement.” Expert Rev Pharmacoecon & Outcomes Res. 2003 Apr;3(2):131-45. PMID: 19807361

Patient-Reported Outcomes Assessment

  1. Garcia SF, Cella D, Clauser SB, Flynn KE, Lai JS, Reeve BB, Smith AW, Stone AA, Weinfurt KP. “Standardizing patient-reported outcomes assessment in cancer clinical trials: A Patient-reported Outcomes Measurement Information System initiative.” Journal of Clinical Oncology. 2007 Nov 10;25(32):5106-5112. PMID: 17991929
  2. Flynn KE, Lin L, Ellis, SJ, Russell SD, Spertus JA, Whellan DJ, Pina IL, Fine LJ, Schulman KA, Weinfurt KP; HF-ACTION Investigators. “Outcomes, health policy, and managed care: relationships between patient-reported outcome measures and clinical measures in outpatients with heart failure.”  Am Heart J. 2009 Oct;158(4 Suppl):S64-71. PMID: 19782791
  3. Weinfurt KPLin L, Dombeck CB, Broderick JE, Snyder DC, Williams MS, Fawzy MR, Flynn KE.  “Accuracy of 30-Day recall for components of sexual function and the moderating effects of gender and mood.”  The Journal of Sexual Medicine 2014;11(3):678-96. PMID: 23802907
  4. Weinfurt K.P., et al. “Development and Initial Validation of the PROMIS® Sexual Function and Satisfaction Measures Version 2.0. The Journal of Sexual Medicine 2015; 12(9):1961-74. PMID: 26346418
  5. Reeve BB, Edwards LJ, Jaeger BC, Hinds PS, Dampier C, Gipson DS, Selewski DT, Troost JP, Thissen D, Barry V, Gross HE, DeWalt DA. “Assessing responsiveness over time of the PROMIS® Pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease.” Qual Life Res. 2018;27(1):249-57. PMID: 28884421
  6. Reeve BB, Thissen DM, Bann CM, Mack N, Treiman K, Sanoff HK, Roach N, Magnus BE, He J, Wagner LK, Moultrie R, Jackson KD, Mann C, McCormack LA, “Psychometric evaluation and design of patient-centered communication measures for cancer care settings,”  Patient Educ Couns. 100 (2017) 1322-1328. PMID: 28214167
  7. Reeve BB, Thissen D, DeWalt DA, Huang I-C, Liu Y, Magnus B, Quinn H, Gross HE, Kisala PA, Ni P, Haley SM, Mulcahey MJ Charlifue S, Hanks R, Slavin M, Jette AM, Tulsky DS. “Linkage between the PROMIS® pediatric and adult emotional distress measures.” Qual Life Res. 2016;25(4):823-33. PMID: 26424169
  8. Reeve BB, Wyrwich KW, Wu AW, Velikova G, Terwee CB, Snyder CF, Schwartz C, Revicki DA, Moinpour CM, McLeod LD, Lyons JC, Lenderking WR, Hinds PS, Hays RD, Greenhalgh J, Gershon R, Feeny D, Fayers PM, Cella D, Brundage M, Ahmed S, Aaronson NK, Butt Z; on behalf of the International Society for Quality of Life Research (ISOQOL). “ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research.” Qual Life Res. 2013;22(8):1889-905. PMID: 23288613

Patient-Centered Outcomes Research

  1. Flynn KE, Piña IL, Whellan DJ, Lin L, Blumenthal JA, Ellis SJ, Fine LJ, Howlett JG, Keteyian SJ, Kitzman DW, Kraus WE, Miller NH, Schulman KA, Spertus JA, O'Connor CM, Weinfurt KP. “Effects of exercise training on health status in patients with chronic heart failure: HF-ACTION randomized controlled trial.” JAMA. 2009 Apr 8;301(14):1451-9. doi:10.1001/jama.2009.457. PMID: 19351942
  2. Reeve BB, Cai J, Zhang H*, Weissler MC, Wisniewski K, Gross H, Olshan AF. “Factors that impact health-related quality of life over time for individuals with head and neck cancer.” Laryngoscope. 2016 Dec;126(12):2718-2725. PMID: 27224024
  3. Reeve BB, Mitchell SA, Dueck AC, Basch E, Cella D, Reilly CM, Minasian L, Denicoff AM, O’Mara AM, Fisch MJ, Chauhan C, Aaronson NK, Coens C, Watkins-Bruner D; “Recommended patient-reported core set of symptoms to measure in adult cancer treatment trials,” JNCI: Journal of the National Cancer Institute,106, 7, July 2014, doi: 10.1093/jnci/dju129. PMID: 25006191
  4. Reeve BB, Stover AM*, Jensen RE, Chen RC, Taylor KL, Clauser SB, Collins SP, Potosky AL. “Impact of diagnosis and treatment of clinically localized prostate cancer on health-related quality of life for older Americans: a population-based study.” Cancer. 2012;118(22):5679-87. PMID: 22544633
  5. Reeve BB, Potosky AL, Smith AW, Han PK, Hays RD, Davis WW, Arora NK, Haffer SC, Clauser SB. “Impact of cancer on health-related quality of life of older Americans,” JNCI: Journal of the National Cancer Institute, 101, 12, June 2009, pp.860-868, doi: 10.1093/jnci/djp123. PMID: 19509357

Stated Preference Research

  1. Yang JC, Kilambi V, Mohamed AF, Johnson FR., 2015. “Sample size and utility-difference precision in discrete-choice experiments: A meta-simulation approach,” Journal of Choice Modelling,16, pp. 50-57. doi:10.1016/j.jocm.2015.09.001.
  2. Johnson FR, Lancsar E, Marshall D, Kilambi V, Mühlbacher A, Regier DA, Bresnahan BW, Kanninen B, and Bridges JFP. “Constructing experimental designs for discrete-choice experiments: report of the ISPOR Conjoint Analysis Experimental Design Good Research Practices Task Force.” Value Health. 2013;16(1): 3-13. PMID: 23337210 (Second most-cited Value in Health article, 2013-2014.  Over 3500 downloads in 2015.)
  3. Johnson FR, Van Houtven G, Özdemir S, Hass S, White J, Francis G. “Multiple sclerosis patients’ benefit-risk preferences: serious adverse event risks versus treatment efficacy.” J Neurol. 2009;256(4):554-62. PMID: 19444531
  4. Johnson FR, Özdemir S, Mansfield CA, Hass S, Miller DW, Siegel CA, Sands BE. “Crohn’s disease patients’ benefit-risk preferences: serious adverse event risks versus treatment efficacy.” Gastroenterology. 2007;133(3):769-79. PMID: 17628557
  5. Johnson FR, Hauber AB. “Are chemotherapy patients’ HRQoL importance weights consistent with linear scoring rules? A stated-choice approach.” Qual Life Res. 2006;15(2):285-98. PMID: 16468083
  6. Fairchild AO, Reed SD, Johnson FR, Wolka AM, Anglin G, Noel RA. “What is clearance worth? Patients’ stated risk tolerance psoriasis treatments.” J Dermatolog Treat. 2017: Dec;28(8):709-715. PMID: 28494683
  7. Ostermann J, Brown DS, De Bekker-Grob E, Mühlbacher A, Reed SD. “Preferences for Health Interventions: Improving Uptake, Adherence, and Efficiency.” Patient. 2017;10(4): 511-514. PMID: 28597375
  8. Mühlbacher A, Bethge S, Reed SD, Schulman KA. “Patient Preferences for Features of Health Care Delivery Systems: A Discrete-Choice Experiment.” Health Services Research. April 2016. PMID: 26255998
  9. Havrilesky LJ, Secord AA, Ehrisman JA, Berchuck A, Valea FA, Lee PS, Gaillard S, Samsa G, Cella D, Weinfurt KP, Abernethy AP, Reed SD. “A conjoint analysis of the preferences of women with ovarian cancer for attributes of treatment and disease.” Cancer. 2014;120(23):3651-9. PMID: 25091693