• 73070 Citations
1984 …2024
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Personal profile

Research Interests

As Chair of an interdisciplinary Department of Medical Social Sciences, I play a leadership role in the development and orchestration of transdisciplinary scientific collaborations. Our department conducts basic and applied social science research to advance the understanding of the mechanisms and measurement of health and disease. I oversee all academic and research programs, financial operations, faculty affairs and program development of the department. In both my capacity as PI on multiple trans-NIH initiatives and as Chair, I play leadership roles in the development and orchestration of transdisciplinary scientific collaborations. As a measurement scientist with expertise in applied health status measurement, I have led the development of numerous item banks and instruments, intended for both normal and clinical populations including paper-and-pencil and computer administered instruments. I was the principal investigator of the trans-NIH NeuroQoL and the PROMIS Statistical Center. In the first cycle of PROMIS (2004-2009), I was PI of the Statistical Coordinating Center (SCC). Currently I am the PI of The National Person-Centered Assessment Resource (PCAR) grant and ECHO PRO CORE grant. A theme of my work has been ensuring that the voice of the patient is reflected in clinical care and clinical research, including areas of high-stakes decision-making such as regulatory review, payer negotiations, and individual clinical care. A major focus of many of these initiatives has been ensuring measurement sensitive to diverse populations including issues of health literacy and health disparities and developmentally-sensitive measurement across the lifespan.

Training Experience

1980Internship, Loyola University Counseling Center
1982Internship, Payne Whitney Psychiatric Clinic
1983Fellowship, Payne Whitney Psychiatric Clinic
1986Fellowship, Memorial Sloan-Kettering Cancer Center

Education/Academic qualification

PhD, Loyola University-Stritch School of Medicine

… → 1984

Research interests

  • Cancer Communications
  • Health Disparities
  • Outcome Measures
  • Patient-Reported Outcomes
  • Psychological Issues of Patients Dealing with Medical Illness
  • Psychometrics
  • Quality of Life

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Grants 2001 2024

Electronic Health Records
Symptom Assessment
Ambulatory Care
Lower Urinary Tract Symptoms
Urinary Tract
Cluster Analysis
Mobile Applications
Outcome Assessment (Health Care)
Irritable Bowel Syndrome
Information Systems
Drug Approval
United States Food and Drug Administration
Information Systems
Outcome Assessment (Health Care)
Critical Pathways

Research Output 1984 2020

Information Systems
Normal Distribution
Patient Reported Outcome Measures

A New Brief Clinical Assessment of Lower Urinary Tract Symptoms for Women and Men: LURN SI-10

and the LURN Study Group, Jan 1 2020, In : The Journal of urology. 203, 1, p. 164-170 7 p.

Research output: Contribution to journalArticle

Lower Urinary Tract Symptoms
Urinary Tract
Area Under Curve

Longitudinal changes in symptom-based female and male LUTS clusters

the LURN Study Group, Jan 1 2020, In : Neurourology and Urodynamics. 39, 1, p. 393-402 10 p.

Research output: Contribution to journalArticle

Lower Urinary Tract Symptoms
Urinary Tract
Observational Studies
Linear Models
Cohort Studies

A new outcome measure for LUTS: Symptoms of Lower Urinary Tract Dysfunction Research Network Symptom Index-29 (LURN SI-29) questionnaire

the LURN Study Group, Aug 1 2019, In : Neurourology and Urodynamics. 38, 6, p. 1751-1759 9 p.

Research output: Contribution to journalArticle

Lower Urinary Tract Symptoms
Outcome Assessment (Health Care)
Urinary Tract
Statistical Factor Analysis

A Quality-adjusted Time Without Symptoms or Toxicity (Q-TWiST) Analysis of Nivolumab Versus Everolimus in Advanced Renal Cell Carcinoma (aRCC)

Shah, R., Botteman, M., Solem, C. T., Luo, L., Doan, J., Cella, D. & Motzer, R. J., Jan 1 2019, In : Clinical Genitourinary Cancer.

Research output: Contribution to journalArticle

Open Access
Renal Cell Carcinoma
Patient Preference