Breast cancer-related lymphedema and quality of life: A qualitative analysis over years of survivorship

Allison B Anbari1 , Ausanee Wanchai2 and Jane M Armer1. Chronic Illness 2019


Objectives: The study purpose was to examine perspectives of women with newly diagnosed breast cancer-related lymphedema (BCRL) regarding their quality of life over seven years.

Method: Data were collected over seven years using the Lymphedema and Breast Cancer Questionnaire (LBCQ). Participants with BCRL answered open-ended questions corresponding to changes in mood and lifestyle from post-op through annual interviews and surveys. Self reported data from 97 participants with BCRL were analyzed using in vivo coding and template-style content analysis to elicit the impact of BCRL on quality of life domains.

Results: Data saturation was achieved as participants neared 30 to 36months post- breast cancer diagnosis. Three major themes were identified related to BCRL’s impact on: physical function; daily living and social function; and psychological function.

Discussion: Findings suggest that BCRL impacts quality of life not only soon after diagnosis, but also throughout survivorship years. Healthcare providers should develop programs to enhance quality of life for survivors with BCRL.

Main findings

  • Data were collected over seven years.
  • Data for the primary study included serial arm measurements using perometry and circumferences by tape measure conducted in the LE research lab, as well as the completion of the reliable and validated Lymphedema and Breast Cancer Questionnaire (LBCQ). The LBCQ includes 58-items and was used as an interview guide by a research nurse in the research lab and as a questionnaire completed by patients independently once a year.
  • Participants completed the anthropometric lab measures and the LBCQ by an interview with the research nurse at the post-operative visit and every three months for one year following surgery, then every six months, through seven years post-operation. Additionally, participants annually completed a packet of tools that included the LBCQ. Participants completed this series of tools independently and mailed the packet back to the research office.
  • N = 97
  • Three major QOL categories were identified in the participants’ narratives. (See Table 1) Firstly, a BCRL diagnosis has an impact on physical function that includes pain, fatigue, and being less active. Second, BCRL has an impact on daily living and social function where participants feel and become limited in their jobs and roles, while also expressing body image concerns. Finally, BCRL has an impact on psychological function that includes frustration, depression, and being more irritable. These three themes and their corresponding codes and excerpts permeate across all the QOL domains.
  • Implications for clinical practice.
    • As more is learned about BCRL’s impact on mood and lifestyle (QOL), healthcare providers can better educate and provide appropriate services for women who are at-risk for or who develop BCRL. Approaching a BCRL diagnosis early with this knowledge could lessen the QOL burden of this chronic condition. Additional assessment using the LBCQ tool would add to what is known about BCRL and QOL. The author’s findings support and promote the recommendation that additional interventions to sustain, maintain, and enhance physical, social, and
    • Psychological function of women with BCRL should be designed and implemented proactively. That is, the intensity and frequency of therapy, education, and support should occur early and often to prevent large negative impacts of BCRL on survivors’ QOL.
    • Interventions could include additional monitoring for increased signs and symptoms of BCRL and individualized education about the importance of self-management. This will allow for meaningful and useful adjustments to survivors’ knowledge, skills, and attitudes early-on to lessen the burden and impact of BCRL on QOL.