Patient Perceptions of Barriers to Self Management of Breast Cancer–Related Lymphedema

Pamela L. Ostby 1, Jane M. Armer1, Kandis Smith1, and Bob R. Stewart1. Western Journal of Nursing Research 2018, Vol. 40(12) 1800 –1817

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Patient Perceptions of Barriers to Self Management of Breast Cancer–Related Lymphedema

Pamela L. Ostby  1, Jane M. Armer1,  Kandis Smith1, and Bob R. Stewart1. Western Journal of Nursing Research 2018, Vol. 40(12) 1800 –1817

Breast cancer survivors are at lifetime risk for the development of breast cancer–related lymphedema, a chronic, potentially debilitating condition that requires life-long symptom management. Suboptimal self-management rates suggest that health care providers may not be offering educative-support options that are customized to patient-perceived needs. An Institutional Review Board–approved focus group (N = 9) and mailed surveys (N = 15) were used to identify (a) barriers to lymphedema self-management, (b) how breast cancer survivors with lymphedema defined education and support, (c) what type of education and support they had received, and (d) what kind of education and support they wanted. Physiological, psychological, and psychosocial factors were identified as barriers to successful lymphedema self-management. One of the main barriers identified was lack of education about lymphedema treatment and risk reduction. In addition, more than half defined support as “prescriptions” and “referrals”; therefore, it is unclear whether patients were exposed to support other than medical treatment.

Main findings

  • Physiological, psychological, and psychosocial factors are barriers to successful lymphedema self-management. Obesity (body mass index [BMI] > 30), orthopedic problems, hypertension, and arthritis impact adherence to BCRL self-management as well as quality of life (QOL). Other barriers are lack of social, family, and professional support; time-consuming daily lymphedema care; lack of public sensitivity to the problem; insufficient health insurance; and financial burdens. The lack of evidence-based research relevant to BCRL risk reduction, treatment, education, and support creates a wide variety of practice patterns and clinical uncertainty. For many breast cancer survivors, developing BCRL is a prevalent fear, second only to breast cancer recurrence.
  • The study involved a focus group and an online survey.
  • The themes that arose from the findings were:
    • Theme 1: Lack of BCRL patient education provided by health care providers.
      • Subtheme – Ill timed and too much information
      • Subtheme – minimalization of BCRL education and inaccurate information from health care providers.
    • Theme 2: Lack of understanding by others.
      • Subtheme- feelings of marginalisation
      • Subtheme – nontherapeutic communication
    • Theme 3: Decreased self – efficacy
      • Subtheme – treatment burden
      • Subtheme: Lack of follow up support
  • The majority of survey participants indicated that BCRL education was not provided until they developed BCRL.
  • These studies led to the following conclusions that warrant further study: (a) Patients are voicing the need for accurate information from health care providers prior to definitive treatment for breast cancer, (b) a supportive component to care throughout survivorship should be included with BCRL education, (c) assessment of cognitive and emotional factors should be included in educative-supportive programs, (d) research studies are needed to further explore alternative types of education and support from which patients can choose, and (e) patient-centered interactive approaches to education may be more effective than current strategies.