Development of Practical Outcome Measures to Account for Individual Differences and Temporal Changes in Quality of Life Appraisal [Methods Study], New York, 2013-2019 (ICPSR 39472)

Version Date: Aug 27, 2025 View help for published

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Bruce Rapkin, Albert Einstein College of Medicine

https://doi.org/10.3886/ICPSR39472.v1

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Many research studies seek to learn how treatments affect patients' quality of life. Quality of life includes mood and energy. It also includes how people view their roles in their families or communities and whether they can perform those roles. Researchers use surveys to ask about patients' quality of life. But patients may answer the same question differently depending on different characteristics, such as their age or where they live. Some patients may think about their work roles while others may think about their families or social lives. How patients think about quality of life can affect what researchers learn about the effects of treatment.

In this study, the research team tested two surveys they created to measure differences in how patients think about their quality of life. The first, long survey had 74 questions, and the second, short survey had 23 questions.

Rapkin, Bruce. Development of Practical Outcome Measures to Account for Individual Differences and Temporal Changes in Quality of Life Appraisal [Methods Study], New York, 2013-2019. Inter-university Consortium for Political and Social Research [distributor], 2025-08-27. https://doi.org/10.3886/ICPSR39472.v1

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Patient-Centered Outcomes Research Institute (PCORI) (ME-1306-00781)
Inter-university Consortium for Political and Social Research
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2013 -- 2019
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To develop practical measures of patients' cognitive appraisal of QOL, the study aims were to (1) leverage existing data to identify important aspects of appraisal; (2) derive concise appraisal measures in conjunction with stakeholders who use QOL assessments for research, practice, or policy evaluation; and (3) test these measures in a sample of patients with bladder cancer.

Researchers tested the QOL Appraisal Profile Version 2 (QOLAPv2) and Brief Appraisal Inventory (BAI) in a prospective cohort study that included 110 patients treated for bladder cancer. Of these, 72% were white, 17% were black, and 16% were multiracial. The average age was 71, and 70% were male. Patients filled out the instruments at the beginning of the study and again three months later. They also completed other surveys that measured mood and life experiences.

To test construct validity, researchers examined relationships between the quality of life (QOL) assessment items and patients' demographics, using correlations and regressions.

Researchers conducted a redundancy analysis to test whether the BAI could serve in place of the longer QOLAPv2, using correlations, principal component analysis, and regression models to compare the two instruments.

To examine response shift, researchers used regression models to assess whether the instruments accounted for changes in QOL due to changes in mood and life experiences.

Bladder cancer survivors recruited from 3 sites: Montefiore Medical Center in the Bronx, New York (Montefiore); Memorial Sloan Kettering Cancer Center on the Upper East Side of Manhattan (MSKCC); and White Plains Hospital in suburban Westchester County immediately north of the Bronx.

The study sample included 110 people with bladder cancer

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2025-08-27

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This study is maintained and distributed by the Patient-Centered Outcomes Data Repository (PCODR). PCODR is the official data repository of the Patient-Centered Outcomes Research Initiative (PCORI).