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

Pamela L. Ostby, Jane M. Armer, Kandis Smith, Bob R. Stewart

Western Journal of Nursing Research, November 30, 2017

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

Pamela L. Ostby, Jane M. Armer, Kandis Smith, Bob R. Stewart. Western Journal of Nursing Research, November 30, 2017

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

  • Patient adherence rates are suboptimal.
  • Physical Activity and Lymphedema (PAL) trial, Brown, Cheville, Tchou, Harris, and Schmitz (2014) reported suboptimal BCRL self-management adherence rates with only 31% of participants reporting adherence rates of ≥75%.
  • Individualized modalities may have higher adherence rates; however, most BCRL regimens will involve three to 12 modalities, depending on symptom severity.
  • Physiological, psychological, and psychosocial factors are barriers to successful lymphedema self-management (Fu et al., 2013; Ridner, Dietrich, & Kidd, 2011).
  • Dietrich (2008) identified obesity (body mass index [BMI] > 30), orthopaedic problems, hypertension, and arthritis as more prevalent in the lymphedema group, impacting adherence to BCRL self-management as well as quality of life (QOL).
  • Contributing factors to psychological and psychosocial barriers were identified in a systematic review of 23 studies (11 quantitative; 12 qualitative), which included 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 (Fu & Kang, 2013; Fu et al., 2013).
  • For many breast cancer survivors, developing BCRL is a prevalent fear, second only to breast cancer recurrence.
  • Patients are voicing their dissatisfaction with (a) not being offered BCRL education by health care providers, (b) inadequate information, and/or (c) conflicting information.
  • Dedicated websites (76%) were rated as the most commonly used source for information by patients with primary or secondary lymphedema (Deng et al., 2013).
  • Second to dedicated websites, top information sources were physicians and primary health care providers (55.5%), support groups on the Internet (33.6%), and family and friends (32.1%) (Deng et al., 2013).
  • Education alone is inadequate, as it does not offer a supportive component to address psychological well-being and coping skills in maintaining adherence to BCRL self-management (Armer, Brooks, & Stewart, 2011).
  • Small sample size with approx 50 in the focus group and 12 survey results.
  • The lack of BCRL education, lack of understanding by others, and decreased self-efficacy may contribute to unsuccessful BCRL management, development of serious complications, participants’ withdrawal from BCRL information-seeking behaviors, and decreased self-efficacy.
  • The majority of survey participants indicated that BCRL education was not provided until they developed BCRL. One major finding in the study demonstrated that 81% of the survey participants indicated that interaction with others worked best for learning about BCRL and 77% of participants preferred interaction with others as the best means for providing support.
  • Suboptimal BCRL self-management adherence rates may be directly or indirectly related to the lack of interactive patient-centered programs that provide education and support throughout survivorship.
  • 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.