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Agreement between personally generated areas of quality of life concern and standard outcome measures in people with advanced cancer

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Abstract

Purpose

People with advanced cancer experience different sequelae which have unique effects on quality of life (QOL). The patient-generated index (PGI) is a personalized measure that allows patients to nominate, rate, and value areas that have the most impact on QOL. Fatigue, pain, and aspects of physical function are among the top 10 areas with QOL impact. An area of validation that is lacking for the PGI is the extent to which spontaneously nominated areas of QOL that patients are concerned with, agree with ratings obtained from standard patient reported outcomes (PROs).

Methods

Data from 192 patients were used to compare ratings on fatigue, pain, and physical function obtained from PGI to those from standard outcome measures.

Results

Within one severity rating, agreement ranged from 32.1 to 76.9 % within the fatigue domain, 34.2 to 95.24 % for pain, and between 84.2 and 94.7 % for physical function. Of the 10 items where the PGI had the highest agreement, 7 came from the RAND-36. At the domain level, people nominating an area scored in the more impaired range on standard measures than people who did not.

Conclusion

PGI gives comparable information as do standard measures.

Implications for cancer

PGI provides important information to guide clinical care of the patient and also produces a legitimate total score suitable for research.

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Author information

Authors and Affiliations

  1. School of Physical and Occupational Therapy, Division of Clinical Epidemiology, McGill University Department of Medicine, 687 Pine Ave W, Ross Pavilion R4.29, Montreal, H3A 1A1, QC, Canada

    Ala’ S Aburub & Nancy E. Mayo

  2. Département de Médecine Familiale et de Médecine d’urgence, Centre de Recherche sur le Cancer, Universite Laval, Centre de recherche du CHU de Québec, 9 rue McMahon, Local Qc, G1R 2J6, Québec, 1899-6, Canada

    B. Gagnon

  3. School of Rehabilitation Sciences, McGill University, 3654 Prom Sir-William-Osler, Montréal H3G 1Y5, Québec, Canada

    A. M. Rodríguez

Authors
  1. Ala’ S Aburub
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  2. B. Gagnon
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  3. A. M. Rodríguez
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  4. Nancy E. Mayo
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Corresponding author

Correspondence to Ala’ S Aburub.

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Funding

This research was supported by a grant from the Terry Fox Research Institute and by the Cancer Research Society/Rob Lutterman Pancreatic Cancer Research Grant. B Gagnon is a recipient of “Chercheur-clinicien Boursier” award from Fond de Recherche Santé Québec, Québec, Canada.

Conflict of interest

The authors declare that they have no conflict of interest.

Informed consent

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.

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Aburub, A.S., Gagnon, B., Rodríguez, A.M. et al. Agreement between personally generated areas of quality of life concern and standard outcome measures in people with advanced cancer. Support Care Cancer 24, 3831–3838 (2016). https://doi.org/10.1007/s00520-016-3204-4

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  • DOI: https://doi.org/10.1007/s00520-016-3204-4

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