Determining issues of importance for the evaluation of quality of life and patient-reported outcomes in breast cancer: results of a survey of 1072 patients

Hollen, Patricia J.; Msaouel, Pavlos; Gralla, Richard J.

doi:10.1007/s10549-015-3420-5

Cited by 44Cancer survivorship and careHealth Systems, Economic Evaluations, Quality of LifeCancer-related cognitive impairment studies

Determining issues of importance for the evaluation of quality of life and patient-reported outcomes in breast cancer: results of a survey of 1072 patients

Hollen, Patricia J., Msaouel, Pavlos, Gralla, Richard J.·2015·Breast Cancer Research and Treatment

DOI 10.1007/s10549-015-3420-5

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Abstract

Identifying key issues for patients is central to assessing treatment for cancer, especially when evaluating health-related quality of life (QL) and patient-reported outcomes (PROs). This study was conducted to provide enhanced content validity support by incorporating the views of a large number of patients with breast cancer. This methodological study used an anonymous, cross-sectional, electronic web-based survey of 1072 patients with a diagnosis of breast cancer. Patients ranked the importance of 21 issues on a 5-point scale. Issues included general, physical, functional, psychosocial, and summative items. Analysis was also performed by four key factors (age group, time since diagnosis, adjuvant treatment or not, and tumor extent). All of the top five issues rated as either "very important" or "important" were global issues-rather than symptoms-such as maintaining quality of life (ranked in these two highest categories by 99 % of patients), maintaining independence (97 %), and ability to perform normal activities (97 %). The abilities to concentrate and to be able to sleep (97 and 96 %, respectively) were ranked above specific breast cancer symptoms. Specific symptoms included within the top ten highest ranked items were fatigue, depression, anxiety, shortness of breath, and pain. This is the largest analysis of evidence-based data determining support for content validity for QL and PROs provided by patients with breast cancer. While symptoms are important to patients, the survey also demonstrates that PRO measures that only evaluate symptoms are not fully responding to patient-expressed needs. These results provide confidence in the content of quality of life measures for large groups of patients with breast cancer, including the new Breast Cancer Symptom Scale (BCSS) questionnaire.

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Additional file 4 of Real-world patient-reported outcomes of women receiving initial endocrine-based therapy for HR+/HER2− advanced breast cancer in five European countries
Davie, A. M., Carter, G. C., Rider, A., Pike, J., Lewis, K., Bailey, A., Price, G. L., Ringeisen, F. P., & Pivot, X. B. (2020) · Figshare · doi:10.6084/m9.figshare.12926217
Additional file 7 of Real-world patient-reported outcomes of women receiving initial endocrine-based therapy for HR+/HER2− advanced breast cancer in five European countries
Davie, A. M., Carter, G. C., Rider, A., Pike, J., Lewis, K., Bailey, A., Price, G. L., Ringeisen, F. P., & Pivot, X. B. (2020) · Figshare · doi:10.6084/m9.figshare.12926226
Additional file 1 of Serum 25-hydroxyvitamin D and cancer-related fatigue: associations and effects on depression, anxiety, functional capacity and health-related quality of Life in breast cancer survivors during adjuvant endocrine therapy
Custódio, I. D. D., Nunes, F. S. M., Lima, M. T. M., de Carvalho, K. P., Alves, D. S., Chiaretto, J. F., Canto, P. P. L., Paiva, C. E., & de Paiva Maia, Y. C. (2022) · Figshare · doi:10.6084/m9.figshare.20445442
Additional file 6 of Real-world patient-reported outcomes of women receiving initial endocrine-based therapy for HR+/HER2− advanced breast cancer in five European countries
Davie, A. M., Carter, G. C., Rider, A., Pike, J., Lewis, K., Bailey, A., Price, G. L., Ringeisen, F. P., & Pivot, X. B. (2020) · Figshare · doi:10.6084/m9.figshare.12926223
Additional file 2 of Serum 25-hydroxyvitamin D and cancer-related fatigue: associations and effects on depression, anxiety, functional capacity and health-related quality of Life in breast cancer survivors during adjuvant endocrine therapy
Custódio, I. D. D., Nunes, F. S. M., Lima, M. T. M., de Carvalho, K. P., Alves, D. S., Chiaretto, J. F., Canto, P. P. L., Paiva, C. E., & de Paiva Maia, Y. C. (2022) · Figshare · doi:10.6084/m9.figshare.20445445
Additional file 2 of Real-world patient-reported outcomes of women receiving initial endocrine-based therapy for HR+/HER2− advanced breast cancer in five European countries
Davie, A. M., Carter, G. C., Rider, A., Pike, J., Lewis, K., Bailey, A., Price, G. L., Ringeisen, F. P., & Pivot, X. B. (2020) · Figshare · doi:10.6084/m9.figshare.12926211
Additional file 3 of Real-world patient-reported outcomes of women receiving initial endocrine-based therapy for HR+/HER2− advanced breast cancer in five European countries
Davie, A. M., Carter, G. C., Rider, A., Pike, J., Lewis, K., Bailey, A., Price, G. L., Ringeisen, F. P., & Pivot, X. B. (2020) · Figshare · doi:10.6084/m9.figshare.12926214
Additional file 5 of Real-world patient-reported outcomes of women receiving initial endocrine-based therapy for HR+/HER2− advanced breast cancer in five European countries
Davie, A. M., Carter, G. C., Rider, A., Pike, J., Lewis, M. K., Bailey, A., Price, G. L., Ringeisen, F. P., & Pivot, X. B. (2020) · Figshare · doi:10.6084/m9.figshare.12926220
Additional file 1 of Real-world patient-reported outcomes of women receiving initial endocrine-based therapy for HR+/HER2− advanced breast cancer in five European countries
Davie, A. M., Carter, G. C., Rider, A., Pike, J., Lewis, M. K., Bailey, A., Price, G. L., Ringeisen, F. P., & Pivot, X. B. (2020) · Figshare · doi:10.6084/m9.figshare.12926208
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Authors: Hollen, P. J., Msaouel, P., & Gralla, R. J.
Affiliations: University of Virginia (US)
Albert Einstein College of Medicine (US)
Corresponding author: Hollen, Patricia J.
ORCID: Msaouel, Pavlos
Gralla, Richard J.
Venue: Breast Cancer Research and Treatment
Publisher: Springer Science and Business Media LLC
Published: 2015-05-17
Volume: 151
Issue: 3
Pages: 679-686
ISSN: 0167-6806 (ISSN-L)
1573-7217
DOI: 10.1007/s10549-015-3420-5
OpenAlex: W285014227
Cited by: 44
References: 12
Citations by year: 2026: 2 · 2024: 4 · 2023: 3 · 2022: 4 · 2021: 1 · 2020: 12 · 2019: 1 · 2018: 7 · 2017: 6 · 2016: 3 · 2015: 1
FWCI: 2.48
Type: journal article
Language: en
Open access: closed
Licence: www.springer.com/tdm (tdm)
Locations: Breast Cancer Research and Treatment (publishedVersion)
PubMed (publishedVersion)
Topics: Health Sciences › Medicine › Oncology › Cancer survivorship and care
Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cancer-related cognitive impairment studies
Keywords: breast cancer, health-related quality of life, patient-reported outcomes, content validity, patient priorities, fatigue, depression, anxiety, sleep, independence, adjuvant therapy, tumor extent
MeSH terms: Adult, Aged, Aged, 80 and over, Breast Neoplasms, Cross-Sectional Studies, Female, Humans, Male, Middle Aged, Neoplasm Metastasis, Quality of Life, Surveys and Questionnaires, Recurrence, Risk Factors, Time Factors, Self Report, Patient Outcome Assessment

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Determining issues of importance for the evaluation of quality of life and patient-reported outcomes in breast cancer: results of a survey of 1072 patients

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