Cooper, O., McBain, H., Tangayi, S., Telfer, P., Tsitsikas, D., Yardumian, A., & Mulligan, K. (2019). Psychometric analysis of the adult sickle cell quality of life measurement information system (ACSQ-Me) in a UK population. Health and Quality of Life Outcomes. 17, 74. https://doi.org/10.1186/s12955-019-1136-7
Curtis, S., & Brandow, A.M. (2017). Responsiveness of Patient-Reported Outcome Measurement Information System (PROMIS) Pain Domains and Disease-Specific Patient-Reported Outcome Measures in Children and Adults with Sickle Cell Disease. ASH Education Program Book, 2017(1), 542-545. https://www.ncbi.nlm.nih.gov/pubmed/29222303
Darbari, D.S., & Brandow, A.M. (2017). Pain-Measurement Tools in Sickle Cell Disease: Where Are We Now? ASH Education Program Book, 2017(1), 534-541. https://www.ncbi.nlm.nih.gov/pubmed/29222302
Eckman, J.R., Hassell, K.L., Huggins, W., Werner, E.M., Klings, E.S., Adams, R.J., . . . Hamilton, C.M. (2017). Standard Measures for Sickle Cell Disease Research: The Phenx Toolkit Sickle Cell Disease Collections. Blood Advances, 1(27), 2703-2711. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5745137/
Esham, K.S., Rodday, A.M., Weidner, R.A., Buchsbaum, R.J., Smith, H.P., & Parsons, S.K. (2017). Assessment of Health-Related Quality of Life in Adults Hospitalized with Sickle Cell Disease Vaso-Occlusive Crisis. Blood, 130(Suppl 1), 2138-2138. http://www.bloodjournal.org/content/130/Suppl_1/2138
Esham, K.S., Rodday, A.M., Weidner, R.A., Buchsbaum, R.J., Smith, H.P., & Parsons, S.K. (2016). Health-Related Quality of Life (HRQL) among Hospitalized Adults with Sickle Cell Disease (SCD): Incorporating Patient-Reported Outcome (PRO) Measures in Clinical Care. Blood, 128(22), 5962-5962. http://www.bloodjournal.org/content/128/22/5962
Evensen, C.T., Treadwell, M.J., Keller, S., Levine, R., Hassell, K.L., Werner, E.M., & Smith, W.R. (2016). Quality of Care in Sickle Cell Disease: Cross-Sectional Study and Development of a Measure for Adults Reporting on Ambulatory and Emergency Department Care. Medicine, 95(35), e4528. https://www.ncbi.nlm.nih.gov/pubmed/27583862
Keller, S., Yang, M., Treadwell, M.J., & Hassell, K.L. (2017). Sensitivity of Alternative Measures of Functioning and Wellbeing for Adults with Sickle Cell Disease: Comparison of PROMIS® to ASCQ-Me℠. Health and Quality of Life Outcomes, 15(1), 117. https://www.ncbi.nlm.nih.gov/pubmed/28577358
Keller, S.D., Yang, M., Treadwell, M.J., Werner, E.M., & Hassell, K.L. (2014). Patient Reports of Health Outcome for Adults Living with Sickle Cell Disease: Development and Testing of the ASCQ-Me℠ Item Banks. Health and Quality of Life Outcomes, 12, 125. http://dx.doi.org/10.1186/s12955-014-0125-0
Mulder, N., Nembaware, V., Adekile, A., Anie, K.A., Inusa, B., Brown, B., . . . Derebail, V.K. (2016). Proceedings of a Sickle Cell Disease Ontology Workshop—Towards the First Comprehensive Ontology for Sickle Cell Disease. Applied & translational genomics, 9, 23-29. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4911424/
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Treadwell, M.J., Hassell, K., Levine, R., & Keller, S. (2014). Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me): Conceptual Model Based on Review of the Literature and Formative Research. Clinical Journal of Pain, 30(10), 902-914. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4993284/
As of 1/29/19
Treadwell MJ, Werner EM (2017). Sickle Cell Disease Implementation Consortium. HealthMeasures User Conference, Chicago, IL.
Keller SD, Treadwell MJ, Yang M, Werner EM, Hassell K (2014). Psychometric properties of the adult sickle cell quality of life measurement system. Second Global Congress on Sickle Cell Disease, Rio de Janeiro, Brazil.
Keller SD, Yang M, Evensen C, Treadwell MJ (2012). Are condition-specific measures necessary to the practice of personalized medicine? Presented at the International Society of Quality of Life Research, Budapest, Hungary.
Keller SD, Evensen C, Levine RE, Treadwell MJ (2012). Measuring the Quality of Care Delivered to Patients Suffering from a Rare Disease. Presented at the International Society of Quality of Life Research, Budapest, Hungary.
Keller SD, Levine RE. (2011). The grounded item technique for generating content valid questions. Presented at the International Society of Quality of Life Research, Denver, CO.
Yang M, Keller SD (August 2011). Development of an “R” –Based Computer Adaptive Assessment of Health Based on Patient Reports of their Functioning and Wellbeing. American Psychological Association 119th Annual Convension. Washington, D.C.
Treadwell MJ, Levine RE, Keller SD, Hassell K, Werner EM. (2010). Understanding perspectives of adults with sickle cell disease in developing a disease specific quality of life measurement system. Presented at the International Society of Quality of Life Research, London, UK.
Keller SD..Werner EM. (March, 2010). Adult Sickle Cell HRQoL Measurement (ASCQ-Me): Methods and Validation. National Conference on Blood Disorders in Public Health. Atlanta, GA.
Keller SD, Werner EM (March, 2008). Building on PROMIS: ASCQ-Me. The 2nd PROMIS Conference, Bethesda, MD.
Levine RE, Treadwell MJ. (August, 2007). Health Related Quality of Life. Paper presented the 4th Annual Sickle Cell Disease Symposium, Oakland, CA.
Maurer M, Levine RE, Keller SD, Treadwell, MJ, Hassell K, E.M. Werner, (October, 2007) Application of Cognitive Interviewing Techniques to Ensure the Reliability and Validity of HRQOL Questionnaire Responses. Presented at the International Society of Quality of Life Research, Toronto, Canada.
Levine, R.L., M.J. Treadwell, C. Moucheraud, S.D. Keller, Werner EM (September, 2006). Sickle Cell Disease Health-Related Quality of Life Questionnaire Development Project. SCDAA 34th Annual Convention, Dallas, TX.
Werner EM, Treadwell MJ, Hassell K, Keller SD, Levine RL (December, 2006). Sickle Cell Disease Health-Related Quality of Life Questionnaire Development Project. American Society of Hematology 48th Annual Meeting, Orlando, FL.