selected publications
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Journal Article
- Quality of life and adverse events: prognostic relationships in long-term ovarian cancer survival. Journal of the National Cancer Institute. 2021
- Performance measures based on how adults with cancer feel and function: stakeholder recommendations and feasibility testing in six cancer centers. JCO Oncol Pract. 2020
- End-of-life measures in Huntington disease: HDQLIFE meaning and purpose, concern with death and dying, and end of life planning. Journal of Neurology. 2019
- Agreement between clinician-rated versus patient-reported outcomes in Huntington disease. Journal of Neurology. 2018
- Reliability and validity of the HD-PRO-TriadTM, a health-related quality of life measure designed to assess the symptom triad of Huntington's disease 2017
- HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD). Quality of Life Research. 2016
- New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system). Quality of Life Research. 2016