Lymphedema Knowledge and Practice Patterns Among Oncology Nurse Navigators

August 2012 Vol 3, No 4
Mei R. Fu, PhD, RN, ACNS-BC
New York University
Joanne C. Ryan, PhD, RN
New York University
Charles M. Cleland, PhD
New York University

Abstract: Cancer survivorship is a continuum spanning diagnosis, treatment, and recovery. Oncology nurse navigators educate and support cancer survivors who face long-term adverse effects of cancer treatment such as lymphedema. This Web-based study investigated the knowledge, perceived competence, and practice patterns of lymphedema care of oncology nurse navigators. Invitation to the study was sent to 2510 randomly selected nurses who were likely to provide lymphedema care. A total of 238 nurses in clinical practice constituted the final sample for analysis. Oncology nurses were grouped according to primary nursing role: oncology nurse navigators, advanced practice nurses, directors/ managers/coordinators, and staff nurses. Perceived knowledge and perceived competence in lymphedema risk reduction, treatment, and self-management were evaluated as well as practice patterns of lymphedema care and actual lymphedema knowledge. Analyses included descriptive, comparative, and logistic regression. A strong relationship between perceived knowledge and perceived competence for all 3 areas of lymphedema care was identified. Oncology nurse navigators demonstrated the highest perceived knowledge and perceived competence in lymphedema risk reduction and had increased odds of providing education regarding lymphedema risk reduction compared with the other nurse groups. Overall, actual knowledge of lymphedema was relatively low, but oncology nurse navigators had more actual knowledge than other nurses. Oncology nurse navigators also had increased odds of delivering lymphedema risk reduction when compared with other nurses. Through education and support, oncology nurse navigators can make valuable contributions to cancer survivors and positively impact cancer survivors’ quality of life.

The American Cancer Society estimates that over 1.6 million new cases of cancer will be diagnosed in the United States in 2012.1 These individuals will face the challenges of cancer diagnosis and treatment as well as survivorship or mortality. Early diagnosis and advances in treatment have increased cancer survival rates. The Centers for Disease Control and Prevention reports that approximately 66% of cancer patients are expected to live for 5 years or more after their diagnoses.2 Over 11 million cancer survivors are living in the United States.2 As survival time has lengthened, patients with cancer are facing unexpected burdens accompanying their survival, such as long-term adverse effects of cancer treatment.

One of these long-term adverse effects is lymphedema,3 a chronic and incapacitating condition resulting from cancer treatments such as surgery (tumor excision or lymphadenectomy) and/or radiation therapy.4 Lymphedema can affect patients with a variety of cancers including head and neck, melanoma, breast, prostate, genitourinary, and gynecological.4 The incidence rates for lymphedema vary, ranging from 1% to 48% depending on the type of cancer, location, and treatment as well as the definition and measurement of lymphedema.4,5 With up to 40% of breast cancer survivors facing the daily challenges of lymphedema,4,5 reducing the risk of breast cancer– related lymphedema and promoting self-management of the condition becomes a significant concern for patients and healthcare providers.

Treatment of lymphedema has been, and continues to be, a major healthcare challenge since no surgical or medical treatment can cure this chronic condition.6 The current standard of care in treating lymphedema in the United States is complete decongestive therapy (CDT), typically including manual lymph drainage, multilayer compression bandaging, remedial exercise, meticulous skin care, compression garments, and patient education.7,8 CDT requires that patients make a daily commitment to alleviate swelling and symptoms, as well as to prevent acute exacerbations by using external compression (sleeve, glove, wrap, bandage, or pump), performing remedial exercises and  lymphatic self-massage, and conducting skin care.7 All these activities constitute daily self-management for individuals living with lymphedema. Timely and continuing patient education is essential to assist patients in initiating risk-reduction and self-management activities. Research has shown that patient education has the effect of lessening the burden of this condition in terms of symptom experience and quality of life9-12 (QOL). Oncology nurse navigators have been recognized as patient educators and information providers,13 and as knowledgeable regarding referral sources; however, it is unknown whether oncology nurse navigators are equipped with adequate knowledge and are actively involved in providing lymphedema care for cancer survivors.


Cancer survivorship is considered a continuum spanning cancer diagnosis, treatment, and recovery along which long-term or late adverse effects of cancer treatment, such as lymphedema, may manifest themselves and affect the patients’ quality of survival. As a serious chronic condition associated with cancer treatment, lymphedema can be disfiguring and painful, as well as cause long-term physical, psychological, social, and financial problems.14-17 These problems not only directly impact survivors’ QOL but also pose difficulties for survivors in assimilating their cancer experience and moving on with life.10,16

Recent meta-analysis of 98 studies investigating the association of breast cancer treatment factors with lymphedema identified mastectomy, extent of axillary dissection, radiation, and presence of positive nodes as being significantly associated with increased risk of developing lymphedema.3 Such risk factors are directly related to cancer treatment, yet may be largely unavoidable for cancer patients. There are also known risk factors for lymphedema that are not directly related to cancer treatment. These non–cancer-treatment–related risk factors, such as infections, minor injury or trauma to the affected limb, overuse of the affected limb, obesity, and air travel, may actually be avoidable.7

For decades, the salient issue influencing the impact of lymphedema on cancer survivors was whether survivors received information about lymphedema from their healthcare providers. In the early 1990s, 90% of breast cancer survivors denied receiving basic information concerning their risk of developing lymphedema and expressed frustrations and concerns regarding lack of lymphedema education.18 More than 10 years later, about 50% of breast cancer survivors were being provided with lymphedema information.9 Those who received lymphedema information reported fewer symptoms and scored higher in lymphedema knowledge testing.9

The model of patient navigation was initiated by Dr Harold Freeman (a surgeon in Harlem in New York City) to help patients navigate through the complexities of the healthcare system.19 The role of oncology nurse navigator has evolved to include functioning as the care coordinator who guides patients throughout their cancer experience by assisting patients in understanding their disease and treatment, educating about adverse treatment effects, planning for end-of-life care, or managing life as a cancer survivor.19 We hypothesized that oncology nurse navigators may play a role in lymphedema care in terms of lymphedema risk reduction, treatment, and self-management. To test our hypothesis, we focused our data analysis on lymphedema knowledge, practice patterns, and predictors among oncology nurse navigators and other nurses in clinical practice. Data for the current analysis were from a larger study investigating the practice patterns for lymphedema care and predictors of those practice patterns among oncology nurses.20


The Investigational Review Board of New York University approved this Web-based study. The study utilized a cross-sectional and correlational design. Participants were recruited through an
e-mail invitation sent by the Oncology Nursing Society (ONS). ONS sent invitations to 2510 randomly selected oncology nurses who were in clinical practice and likely to provide lymphedema care to ensure a sample of at least 200 participants in the study. Invitations were e-mailed to randomly selected nurses from the ONS Breast, Lymphedema Management, Surgical Oncology, Radiation Therapy, and Advanced Nurse Practitioner Special Interest Groups.

The study questionnaires were developed by 7 lymphedema experts, consisting of 27 main items assessing lymphedema practice patterns, perceived knowledge and perceived competence (15 items), as well as demographic questions regarding nursing experience and current primary nursing roles (12 items). A combination of different question formats was used. Assessment of perceived knowledge and perceived competence focused on the 3 key aspects of lymphedema care, including risk reduction, treatment, and self-management. An optional 20 questions were designed to evaluate actual knowledge of lymphedema care.

Study data were downloaded by the ONS IT staff using Microsoft Excel files and were verified for data accuracy using the human-in-the-loop method.9,20,21 Data regarding demographic information and responses to questions related to oncology nurses’ knowledge, competence, and practice patterns were analyzed using descriptive and comparative analyses with R software,22 including chi-square test, Fisher exact test, Kruskal-Wallis rank sum, and Pearson correlations. Logistic regression models with R software22 were used to predict practice patterns. All statistical tests were 2 sided, with statistical significance set at 0.05 and 95% confidence intervals (CIs).


Of the 2510 nurses who received e-mails, only 529 nurses opened the e-mail, and 256 (48%) of those completed the study. The self-reported primary nursing roles of the 256 participants included oncology nurse navigator (21), case manager (5), academic educator (9), nurse practitioner (32), clinical nurse specialist (41), clinical trials nurse (3), consultant (2), director/manager/coordinator (39), staff nurse (100), and other (4). In order to be included in the current study, nurses needed to have an active clinical practice role; therefore 18 participants were excluded as their primary nursing roles did not meet these criteria (such as academic educator, consultant, nurse recruiter, etc). Thus only 238 oncology nurses were included in the study. These 238 oncology nurses were grouped according to their self-reported primary nursing role (staff nurse, director/manager/coordinator, nurse practitioner, clinical nurse specialist, nurse navigator). Since the primary nursing roles for oncology nurse navigators and case managers were similar, the 5 case managers were included in the oncology nurse navigator group, resulting in 10.1% of the participants being oncology nurse navigators (n = 26). Most study participants were female oncology nurses 45 to 60 years of age who had more than 20 years of oncology nursing experience, with their highest nursing education at or above a bachelor’s degree. Practice setting was primarily outpatient medical oncology with adult cancer patients in the United States (Table 1). In comparison with nurses who had other primary nursing roles, oncology nurse navigators were similar by age, level of nursing education, practice setting, and years of oncology experience; there was no significant difference between oncology nurse navigators and other nurses with other primary nursing roles.

Self-Reported Perceived Knowledge and Perceived Competence

For each area of lymphedema care, a strong association between perceived knowledge and perceived competence was found risk reduction (r = 0.89; 95% CI, 0.85-0.90; P <.05), treatment (r = 0.75; 95% CI, 0.68-0.79; P <.05), and self-management (r = 0.86; 95% CI, 0.82-0.88; P <.05). Therefore, nurses with a high level of perceived knowledge were likely to have a high level of perceived competence in each area of lymphedema care.

Nonparametric permutation tests23 were conducted to investigate potential differences in the perceived knowledge and perceived competence of the oncology nurse navigators versus those in other primary nursing roles. Oncology nurse navigators reported significantly higher perceived knowledge (P = .033) and perceived competence (P = .036) in lymphedema risk reduction. There were no significant differences between oncology nurse navigators and nurses in other primary nursing roles for lymphedema treatment and self-management. Overall, ratings of perceived knowledge and perceived competence in lymphedema treatment were low for all groups (Figures 1 and 2).

Actual Lymphedema Knowledge

The actual knowledge of oncology nurses regarding lymphedema disease and lymphedema care were evaluated by 20 items that focused on the lymphatic system, as well as strategies for lymphedema risk reduction, treatment, measurement, and management. Table 2 shows the knowledge area for each item, as well as the percentage of nurses giving the correct answer to each item for oncology nurse navigators in comparison with oncology nurses having other primary nursing roles.

Percentage of oncology nurses giving a correct answer ranged from 14.2% to 96.2% across the 20 items. The knowledge item with the lowest percentage of nurses answering correctly addressed the general lymphatic system (range, 14.2%-19.2%), and the question with the highest percentage of nurses answering correctly tested the characteristics of lymph nodes (83.5%-96.2%). There were no significant differences on individual knowledge items by the Fisher exact test.

Further analyses of actual lymphedema knowledge were conducted comparing oncology nurse navigators with nurses having other primary nursing roles. The nonparametric Kruskal-Wallis rank sum test revealed that the oncology nurse navigators had significantly higher actual knowledge than oncology nurses having other primary nursing roles (P = .011). On average, the oncology nurse navigators answered 13.7 of the 20 questions correctly, while oncology nurses having other primary nursing roles anwered 11.9 of the 20 questions correctly. On the whole, there was a small but significant advantage for oncology nurse navigators in total knowledge, yet there was no specific item on which they demonstrated superiority.

Practice Patterns of Lymphedema Care

To describe and identify possible predictors for nursing practice patterns of lymphedema care, logistic regression analyses were conducted. Perceived competence in each of the 3 aspects of lymphedema care predicted the practice of lymphedema risk reduction, treatment, and management. Specifically, having a higher perceived competence in risk reduction significantly increased the odds of providing risk reduction education (odds ratio [OR] = 2.56; 95% CI, 1.86-3.65; P <.01). The same was true for higher perceived treatment competence, which significantly increased the odds of providing education about lymphedema treatment (OR = 1.37; 95% CI, 1.01-1.87; P <.01) and for higher perceived competence in self-management, which significantly increased the odds of providing education regarding self-management (OR = 1.56; 95% CI, 1.2-2.05; P <.01).

When compared with oncology nurses having other primary nursing roles, the oncology nurse navigators had increased odds of educating patients about lymphedema risk reduction (OR = 5.62; 95% CI, 1.47-37.32). Although not statistically significant, there was an increase in the odds of oncology nurse navigators providing education on lymphedema treatment (OR = 2.36; 95% CI, 0.91-5.85).  Being an oncology nurse navigator did not change the odds of providing education on lymphedema self-management in comparison with oncology nurses having other primary nursing roles (OR = 0.76; 95% CI, 0.29-1.89).


Cancer patients are at risk throughout their lives for lymphedema, and its negative impact can be significant.12 Understanding lymphedema risk reduction, treatment, and self-management is key for clinicians to provide cancer survivors with the necessary education, guidance, and support. While some cancer treatment–related risk factors for lymphedema are largely unavoidable, it is possible to avoid major, non–treatment-related risk factors such as infections, obesity, and injury/trauma to the affected area. Through assessment and patient education, oncology nurse navigators can contribute to the prevention of lymphedema. It is therefore critical that oncology nurse navigators are well equipped with adequate knowledge in lymphedema care.

Fortunately, the results of this study indicated that the oncology nurse navigators had statistically significantly higher actual knowledge of lymphedema care in comparison with other oncology nurses. Oncology nurse navigators had the highest self-ratings in perceived knowledge and perceived competence in lymphedema risk reduction and were found to have the greatest odds of providing education regarding lymphedema risk reduction.

The Institute of Medicine recommends that every patient with cancer receive an individualized survivorship plan.24 To achieve this goal, it is important for healthcare providers, including oncology nurse navigators, to be knowledgeable about the challenges and opportunities faced by cancer survivors.25 Oncology nurse navigators who are well equipped with knowledge can ensure effective delivery of lymphedema education and care, an important part of the survival plan. In this way, timely and ongoing patient education could serve as an important measure to address the feelings of abandonment and frustration due to lack of support from healthcare professionals.26,27

While lymphedema can occur following treatment of a variety of tumors, there is limited research and knowledge about this disorder beyond breast cancer. Therefore, this study did not investigate the knowledge and practice of lymphedema care related to specific types of cancers but rather explored oncology nurses’ knowledge and practice patterns associated with cancer-related lymphedema in general.


Overall, the lymphedema knowledge level across the oncology nurse groups was low, although oncology nurse navigators had higher knowledge and perceived competence. To improve knowledge and perceived competence, it is critical to ensure that professional education opportunities are available for oncology nurses, including oncology nurse navigators, to learn about lymphedema and lymphedema care. Professional organizations, such as the Oncology Nursing Society, the Academy of Oncology Nurse Navigators, and the National Coalition of Oncology Nurse Navigators, should take action for their members, such as providing online courses and conference symposia dedicated to lymphedema care.

As key members of the multidisciplinary team caring for cancer survivors, oncology nurse navigators should share their knowledge about lymphedema with other healthcare professionals. Such knowledge sharing is paramount in narrowing the knowledge gap between the oncology nurse navigators and the other oncology nurse groups. A number of established resources for lymphedema care currently exist, and oncology nurse navigators can take advantage of these to better equip themselves. Such resources include the National Lymphedema Network, the StepUp-SpeakOut Organization, the Oncology Nursing Society’s Lymphedema Special Interest Group, and the American Lymphedema Framework Project.

In summary, knowledge of lymphedema and lymphedema care is vital to enhance the role of oncology nurse navigators. Oncology nurse navigators should initiate lymphedema education and risk assessment with their patients. These activities, if done in the clinical setting, have the potential to contribute to the early identification and prompt treatment of lymphedema. As a consistent contact person for patients moving along the continuum of cancer care, oncology nurse navigators can be a source of information, the hub of communication, and the facilitator of action. By doing so, they can ensure that both patients and clinicians are engaged in the practice of lymphedema care to include the sharing and reinforcing of lymphedema knowledge and the motivation of cancer survivors to perform lymphedema risk reduction and self-care. Through this action, oncology nurse navigators can make a critical contribution to cancer survivors and can have a positive impact on cancer survivors’ quality of life.

Author Notes
Mei R. Fu, Associate Professor; Charles M. Cleland, Senior Biostatistician; Joanne C. Ryan, Doctoral Student; all from the College of Nursing, New York University.

The authors wish to acknowledge the Oncology Nursing Society Research Team, Dr Margaret Irwin, and staff for their assistance in administering the Web-based study. The authors also wish to give thanks to Dr Sheila Ridner, Ms Ellen Poage, and Ms Marcia Beck for reviewing the study questionnaires, and to all of the nurses who participated in this study.

Corresponding Author
Mei R. Fu, PhD, RN, ACNS-BC, College of Nursing, New York University, 726 Broadway, 10th Floor, New York, NY 10003; e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it..

Mei R. Fu, PhD, RN, ACNS-BC, has no conflict of interest or financial interest to disclose. Charles M. Cleland, PhD, has no conflict of interest or financial interest to disclose. Joanne C. Ryan, RN, MS, is an em­ployee of Pfizer, Inc, and a PhD student at New York University. The primary research and generation of this publication present no conflict with her employment as it does not relate to any product or service.


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