Patient and Clinician Knowledge of Breast Cancer Lymphedema

Institution: Kaiser Foundation Research Institute
Investigator(s): Marilyn Kwan, Ph.D. -
Award Cycle: 2009 (Cycle 15) Grant #: 15IB-0033 Award: $227,784
Award Type: IDEA
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side



Initial Award Abstract (2009)

Many women diagnosed with breast cancer can expect survival that is similar to cancer-free women of the same age due to advances in early detection and effective adjuvant therapies. Thus, quality of survivorship is becoming increasingly important. One potential complication during the survivorship period is breast cancer-related lymphedema (BCRL), a chronic condition characterized by irregular swelling of the arm, hand, and/or chest. Thus far, survivors have voiced dissatisfaction regarding their education on BCRL risk and being informed about BCRL risk reduction strategies from their healthcare providers. Therefore, an important need exists to better educate patients as well as clinicians about BCRL.

The breast cancer-specific lymphedema topics to be addressed by this research include:
1) the level of knowledge of BCRL among primary care physicians and NPs (nurse practitioners) compared to oncologists (medical and radiation) and surgeons (general and plastic)
2) the relationship between misconceptions about the incidence and availability of treatment of BCRL between oncologists and surgeons
3) overall knowledge of BCRL among patients by age at breast cancer diagnosis and race/ethnicity.
4) follow-up referral rate differences for women diagnosed by their primary care physician or NPs.

For these studies we will use data from a large HMO setting (Kaiser Permanente of Northern California (KPNC) Medical Care Program). We will evaluate the clinical management of BCRL from both the clinician and patient perspective by: (1) conducting a 10-minute web survey asking about knowledge of BCRL and associated referral patterns among 2,575 primary care physicians and 337 NPs, 111 oncologists, and 238 surgeons; and (2) administering a 20-minute telephone survey asking about knowledge and referral experience of BCRL among 400 breast cancer patients diagnosed with BCRL. In addition, we will collaborate with the National Lymphoma Network (Oakland, CA) to develop and pilot test our data collection instruments and protocols, and they will assist us in the dissemination of study results.

BCRL is a chronic condition that can occur in up to 56% of breast cancer survivors weeks to years following treatment. Considering the above research context, our study will contribute to reducing the number of women with BCRL who go undetected and untreated in a large HMO setting.




Final Report (2011)

Currently, there are at least 2.5 million breast cancer survivors in the United States. One potential complication during the breast cancer survivorship period is breast cancer-related lymphedema (BCRL), a chronic condition characterized by irregular swelling of the arm, hand, and/or chest. Thus far, survivors have voiced dissatisfaction regarding their education on BCRL risk and being informed about BCRL risk reduction strategies from their healthcare providers. Therefore, an important need exists to better educate patients as well as clinicians about BCRL. The aims of the present study are to 1) assess the knowledge and treatment referral of patients with BCRL among Kaiser Permanente Northern California (KPNC) primary care physicians and nurse practitioners, oncologists, and surgeons, and 2) determine the knowledge and treatment referral experience of BCRL among a simple random sample of breast cancer patients who were seen for BCRL in the recent past at KPNC.

Data collection for both study aims has been completed. For the clinician portion, a 7-10 minute web survey was conducted from April 2010 to December 2010, and n=887 clinicians participated. For the patient portion, a 20 minute computer assisted telephone interview (CATI) was conducted from February 2010 to February 2011, and n=389 patients participated. A manuscript has been accepted for publication for the clinician results, while final data analyses are underway for manuscript preparation this fall 2011 for the patient portion.

No significant barriers were encountered during the study, although our participation rate for the clinician arm of the study was lower than expected (36% instead of 50%) despite our frequent reminders to clinicians encouraging participation as well as offering incentives for completing the survey.

Additional work to continue the project as a BCRL health education study focused on recently diagnosed breast cancer patients within Kaiser Permanente will hopefully be funded in the near future.




Symposium Abstract (2010)

Marilyn L. Kwan (PI)1, Julie R. Munneke1, Paula N. Partee1, Claudia Samayoa1, Ling Shen1, Emily K. Tam1, Lynn M. Ackerson1, Carol P. Somkin1, Saskia R.J. Thiadens2

1Division of Research, Kaiser Permanente Northern California, Oakland, CA
2National Lymphedema Network, San Francisco, CA

Background: Breast cancer survivors have reported dissatisfaction regarding their education on breast cancer-related lymphedema (BCRL) risk from clinicians. In addition, misconceptions about the development and treatment of BCRL exist among clinicians. Within the Kaiser Permanente (KP) Northern California Medical Care Program, we will evaluate BCRL management by (1) determining BCRL knowledge and referral patterns among breast cancer patients who may have been diagnosed with BCRL and (2) assessing BCRL knowledge and patient referral among primary care clinicians, oncologists, and surgeons.

Methods: Patient information on BCRL diagnosis, care and management, education and support services, and doctor-patient relations is collected from a 20-minute telephone interview that began in February 2010. Clinician information on BCRL knowledge, referral patterns, and education is collected from a 10-minute internet survey that began in May 2010.

Results: To date, 122 patients have participated in the telephone interview. During breast cancer diagnosis and treatment, 60 women (49%) reported receiving information about BCRL risk reduction practices and were aware of practices except for avoidance of temperature extremes (only 60%) and repetitive movements (only 48%). Patients were supportive of improving BCRL education delivered by one-on-one clinician counseling (95%), health education workshops (86%), and brochures (86%). Interestingly, support for newsletters and educational emails were generally positive yet lower at 68% and 62%, respectively. The patients also felt that the surgeon (25%) and oncologist (34%) should be mainly responsible for providing BCRL information. Of 69 patients with a confirmed BCRL diagnosis, about half (48%) were diagnosed by physical therapists, and the remainder were diagnosed primarily by oncologists (28%) or surgeons (13%). A total of 61 (88%) were referred to physical therapy, of which 77% were fitted for a compression garment, 46% had manual lymphatic drainage, and 54% received education in self-care.

To date, 398 clinicians have completed the internet survey, of which 89% were physicians and 10% were nurse practitioners. A total of 56 surgeons (14%), 25 oncologists (6%), 198 primary care physicians (50%), and 85 obstetricians/gynecologists (21%) responded. Over 65% of the clinicians had been working for KP for at least five years. Preliminary results will be available during the CBCRP conference in September.

Conclusions: The BC LINK Study is a first step in improving BCRL knowledge and education within an HMO setting. Results will be used to guide future educational interventions on BCRL.