Current Studies
Financial Wellbeing Measures of Alzheimer’s Disease and Related Dementias
This study is focused on the development and validation of survey instruments to assess financial hardship among individuals living with Alzheimer’s disease and related dementias (AD/ADRD), as well as their caregivers. Through qualitative interviews and structured surveys, the study aims to capture the financial challenges faced by these families and ensure that resulting measures are both reliable and sensitive to their unique circumstances.
Worry about Affording Healthcare in Breast Cancer
This study will examine the experience of financial burden and hardship in people with breast cancer. Participation involved completing a one-time, 60-minute interview or completing two surveys 12 months apart. Interviews and surveys covered causes of financial hardship such as administrative burden, how patients cope with financial hardship and the emotional experiences of worry and depression that come from financial burden after cancer.
Measuring Provider and Intervention Characteristic Determinants of Evidence-Based Cancer Care
This study aims to create quantitative measures for assessing determinants of cancer care Evidence Base interventions (EBIs). Through online surveys, the study will assess the unique barriers in each cancer care setting, producing a set of tools ready for use in any cancer care implementation or quality improvement effort.
MY Daily LIFE: Mapping Your Daily Lifestyle, Interactions, Feelings, and Experiences
This study aims to develop measures reflecting US adults’ experiences of everyday social stress and related coping behaviors on their long-term health outcomes. Drawing on the ecological momentary assessment (EMA) and item response theory (IRT), we will conduct content interviews, cognitive interviews, and surveys to capture the in-person variation of these experiences. The next aim will use these measures to assess the relationship of daily stress to cardiovascular disease risk factors.
Past Studies
Creating Recommendations for Analysis of Patient-Reported Outcomes in Oncology Trials
This project analyzed data from SWOG studies of treatments with known effects on patient reported outcomes to create recommendations for defining meaningful change on quality of life measures. Five meaningful change definitions were examined and results suggested several definitions were more sensitive to change than other methods.
Factors Contributing to Financial Hardship in Cancer Care
This study aims to explore the different aspects of financial hardship experienced by individuals with cancer and identify the factors that contribute to these challenges. Participants completed surveys about their financial experiences during or after cancer treatment.
Implementing Evidence-Based Practice in Clinical Care
This study tested adaptable survey tools for identifying and prioritizing barriers and facilitators to implementing evidence-based practice in clinical care across the cancer continuum. The surveys asked eligible healthcare personnel to describe an evidence-based practice or intervention they are implementing and answer questions about the practice or innovation (current or planned; type of practice on the cancer care continuum; barriers to implementation, implementation state and intention).
Development of Precision Patient-reported Outcomes for the Assessment of Pain
Many people living with cancer experience symptoms – including pain – which can last for years after cancer treatment. The best, and often only, way to assess post-treatment symptoms in survivors is by using patient-reported outcomes (PROs). PROs are questionnaire-based measures that ask patients directly about their symptoms and feelings. In this study we developed PROs that are tailored to, and hence potentially meaningful for, individual patients.
The Relationship of Distress and Health
This study tested several unique methods of determining response on the numerical rating scale (the 0 to 10 pain and distress scales) based on what is personally meaningful to each individual. This project also developed new measures of financial worry about affording healthcare. A second part of this project examined healthcare provider attitudes towards patient-reported outcomes in clinical care. The study is currently in the data analysis phase.
Cancer Screening Barriers in Women at High Risk of Breast Cancer
This project surveyed young women (ages 30 to 50) at high risk of developing breast cancer to determine financial, informational and psychosocial barriers to cancer screening. This study is currently in the data analysis phase.
Funders
- National Comprehensive Cancer Network
- National Institute on Aging
- American Cancer Society