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abstract
Purposes
Patient Generated
Index (PGI) is designed to both ask and document quality of life (QOL)
concerns. Its validity with respect to standard QOL measures has not
been fully established for advanced cancer when QOL concerns
predominate. The specific objective of this study is to identify, for
people with advanced cancer, similarities and differences in ratings of
global QOL between personalized and standard measures.
Methods
A total of 192
patients completed five QOL measures at study entry: PGI, generic
measures (SF-6D, EQ-5D), and cancer-specific measures of QOL (McGill
Quality of Life Questionnaire and Edmonton Symptoms Assessment Scale).
Comparisons among total scores were compared using Generalized
Estimating Equations (GEE).
Results
Patients voiced
114 areas of QOL concerns by the PGI with the top three being fatigue,
sleep, and pain (39.2, 22.6, and 21.6 %, respectively). PGI total QOL
score was 25 to 30 percentage points lower than those documented by the
other measures, particularly when QOL was poor. Correlations between PGI
and other measures were low.
Conclusion
PGI allowed
patients to express a wide range of QOL concerns, many that were not
assessed by other QOL measures. If only one QOL measure is to be
included, either in a clinical setting or for research, the PGI would
satisfy many of the criteria for “best choice.” PGI could be considered a
cancer-specific QOL measure.
Implications for cancer
This study
provides evidence that the PGI would be a good measure for patients and
clinicians to use together to identify areas of concern that require
attention and monitor changing needs.
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