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Presentations and Publications

ASCQ-Me Publications

2019

Cooper O, McBain H, Tangayi S, Telfer P, Tsitsikas D, Yardumian A, Mulligan K. Psychometric analysis of the adult sickle cell quality of life measurement information system (ACSQ-Me) in a UK population. Health Qual Life Outcomes. 2019 Apr 29;17(1):74. doi: 10.1186/s12955-019-1136-7. PubMed PMID: 31036017.

2018

Sarri G, Bhor M, Abogunrin S, Farmer C, Nandal S, Halloway R, Revicki DA. Systematic literature review and assessment of patient-reported outcome instruments in sickle cell disease. Health Qual Life Outcomes. 2018 May 21;16(1):99. doi: 10.1186/s12955-018-0930-y. Review. PubMed PMID: 29784054; PubMed Central PMCID: PMC5963009.

2017

Curtis S, Brandow AM. 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. Hematology Am Soc Hematol Educ Program. 2017 Dec 8;2017(1):542-545. doi: 10.1182/asheducation-2017.1.542. Review. PubMed PMID: 29222303; PubMed Central PMCID: PMC6142574.

Darbari DS, Brandow AM. Pain-measurement tools in sickle cell disease: where are we now? Hematology Am Soc Hematol Educ Program. 2017 Dec 8;2017(1):534-541. doi: 10.1182/asheducation-2017.1.534. Review. PubMed PMID: 29222302; PubMed Central PMCID: PMC6142608.

Eckman JR, Hassell KL, Huggins W, Werner EM, Klings ES, Adams RJ, Panepinto JA, Hamilton CM. Standard measures for sickle cell disease research: the PhenX Toolkit sickle cell disease collections. Blood Adv. 2017 Dec 15;1(27):2703-2711. doi: 10.1182/bloodadvances.2017010702. eCollection 2017 Dec 26. PubMed PMID: 29296922; PubMed Central PMCID: PMC5745137.

Keller S, Yang M, Treadwell MJ, Hassell KL. Sensitivity of alternative measures of functioning and wellbeing for adults with sickle cell disease: comparison of PROMIS® to ASCQ-Mesm. Health Qual Life Outcomes. 2017 Jun 2;15(1):117. doi: 10.1186/s12955-017-0661-5. PubMed PMID: 28577358; PubMed Central PMCID: PMC5455105.

Oyeku SO, Faro EZ. Rigorous and practical quality indicators in sickle cell disease care. Hematology Am Soc Hematol Educ Program. 2017 Dec 8;2017(1):418-422. doi: 10.1182/asheducation-2017.1.418. Review. PubMed PMID: 29222287; PubMed Central PMCID: PMC6142525.

2016

Evensen CT, Treadwell MJ, Keller S, Levine R, Hassell KL, Werner EM, Smith WR. 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 (Baltimore). 2016 Aug;95(35):e4528. doi: 10.1097/MD.0000000000004528. PubMed PMID: 27583862; PubMed Central PMCID: PMC5008546.

2014

Keller SD, Yang M, Treadwell MJ, Werner EM, Hassell KL. Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks. Health Qual Life Outcomes. 2014 Aug 22;12:125. doi: 10.1186/s12955-014-0125-0. PubMed PMID: 25146160; PubMed Central PMCID:PMC4243820.

Treadwell MJ, Hassell K, Levine R, Keller S. Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research. Clin J Pain. 2014 Oct;30(10):902-14. doi: 10.1097/AJP.0000000000000054. PubMed PMID: 24300219; PubMed Central PMCID: PMC4993284.

ASCQ-Me Presentations

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.