Prospective, early longitudinal assessment of lymphedema-related quality of life among patients with locally advanced breast cancer: The foundation for building a patient-centered screening program
Anusha Gandhi,
Tianlin Xu,
Sarah M. DeSnyder,
Grace L. Smith,
Ruitao Lin,
Carlos H. Barcenas,
Michael C. Stauder,
Karen E. Hoffman,
Eric A. Strom,
Susan Ferguson,
Benjamin D. Smith,
Wendy A. Woodward,
George H. Perkins,
Melissa P. Mitchell,
Desmond Garner,
Chelain R. Goodman,
Melissa Aldrich,
Marigold Travis,
Susan Lilly,
Isabelle Bedrosian,
Simona F. Shaitelman
Affiliations
Anusha Gandhi
Baylor College of Medicine, USA; Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA
Tianlin Xu
Department of Biostatistics, The University of Texas MD Anderson Cancer Center, USA
Sarah M. DeSnyder
Department of Breast Surgical Oncology, The University of Texas MD Anderson Cancer Center, USA
Grace L. Smith
Department of GI Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA
Ruitao Lin
Department of Biostatistics, The University of Texas MD Anderson Cancer Center, USA
Carlos H. Barcenas
Department of Breast Medical Oncology, The University of Texas MD Anderson Cancer Center, USA
Michael C. Stauder
Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA
Karen E. Hoffman
Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA
Eric A. Strom
Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA
Susan Ferguson
Department of Breast Medical Oncology, The University of Texas MD Anderson Cancer Center, USA
Benjamin D. Smith
Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA
Wendy A. Woodward
Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA
George H. Perkins
Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA
Melissa P. Mitchell
Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA
Desmond Garner
Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA
Chelain R. Goodman
Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA
Melissa Aldrich
Center for Molecular Imaging, UT Health Science Center at Houston, USA
Marigold Travis
Department of Rehabilitative Therapy, The University of Texas MD Anderson Cancer Center, USA
Susan Lilly
Department of Rehabilitative Therapy, The University of Texas MD Anderson Cancer Center, USA
Isabelle Bedrosian
Department of Biostatistics, The University of Texas MD Anderson Cancer Center, USA
Simona F. Shaitelman
Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, USA; Corresponding author. Unit 1052, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd, Unit 1052 Houston, TX, 77030, USA.
Background: We examined how breast cancer-related lymphedema (BCRL) affects health-related quality of life (HRQOL), productivity, and compliance with therapeutic interventions to guide structuring BCRL screening programs. Methods: We prospectively followed consecutive breast cancer patients who underwent axillary lymph node dissection (ALND) with arm volume screening and measures assessing patient-reported health-related quality of life (HRQOL) and perceptions of BCRL care. Comparisons by BCRL status were made with Mann-Whitney U, Chi-square, Fisher's exact, or t tests. Trends over time from ALND were assessed with linear mixed-effects models. Results: With a median follow-up of 8 months in 247 patients, 46% self-reported ever having BCRL, a proportion that increased over time. About 73% reported fear of BCRL, which was stable over time. Further in time from ALND, patients were more likely to report that BCRL screening reduced fear. Patient-reported BCRL was associated with higher soft tissue sensation intensity, biobehavioral, and resource concerns, absenteeism, and work/activity impairment. Objectively measured BCRL had fewer associations with outcomes. Most patients reported performing prevention exercises, but compliance decreased over time; patient-reported BCRL was not associated with exercise frequency. Fear of BCRL was positively associated with performing prevention exercises and using compressive garments. Conclusions: Both incidence and fear of BCRL were high after ALND for breast cancer. Fear was associated with improved therapeutic compliance, but compliance decreased over time. Patient-reported BCRL was more strongly associated with worse HRQOL and productivity than was objective BCRL. Screening programs must support patients’ psychological needs and aim to sustain long-term compliance with recommended interventions.