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Patient awareness and knowledge of breast cancer-related lymphedema in a large, integrated health care delivery system

  • Epidemiology
  • Published:
Breast Cancer Research and Treatment Aims and scope Submit manuscript

Abstract

Breast cancer patients have voiced dissatisfaction regarding their education on breast cancer-related lymphedema risk and risk reduction strategies from their clinicians. Informing patients about lymphedema can contribute to decrease their risk of developing the condition, or among those already affected, prevent it from progressing further. In this cross-sectional study, a lymphedema awareness score was calculated based on responses to a brief telephone interview conducted among 389 women diagnosed with invasive breast cancer at Kaiser Permanente Northern California from 2000 to 2008 and had a previous record of a lymphedema-related diagnosis or procedure in their electronic medical record. During the telephone interview, women self-reported a lymphedema clinical diagnosis, lymphedema symptoms but no lymphedema diagnosis, or neither a diagnosis nor symptoms, and responded to questions on lymphedema education and support services as well as health knowledge. Multivariable logistic regression [odds ratio (OR) and 95 % confidence interval (CI)] was used to determine the associations of selected sociodemographic and clinical factors with the odds of having lymphedema awareness (adequate vs. inadequate). The median (range) of the lymphedema awareness score was 4 (0–7). Compared with patients <50 years of age, patients 70+ years of age at breast cancer diagnosis had lower odds of adequate lymphedema awareness (OR 0.25; 95 % CI 0.07, 0.89), while patients 50–59 and 60–69 years had greater odds of adequate awareness although not statistically significant (OR 2.05; 95 % CI 0.88, 4.78 and OR 1.55; 95 % CI 0.60, 4.02, respectively; p for trend = 0.09). Higher educational level and greater health literacy were suggestive of adequate awareness yet were not significant. These results can help inform educational interventions to strengthen patient knowledge of lymphedema risk and risk reduction practices, particularly in an integrated health care delivery setting. With the growing population of breast cancer survivors, increasing patient awareness and education about lymphedema risk reduction and care after cancer diagnosis is warranted.

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Abbreviations

BC LINK:

Breast Cancer Lymphedema Information and Knowledge Study

KPNC:

Kaiser Permanente Northern California

IRB:

Institutional Review Board

AJCC:

American Joint Committee on Cancer

ICD:

International classification of diseases

CPT:

Common procedure terminology

SD:

Standard deviation

OR:

Odds ratio

CI:

Confidence interval

References

  1. American Cancer Society, Breast Cancer Facts & Figures 2011–2012, American Cancer Society, Inc.: Atlanta

  2. Lawenda BD, Mondry TE, Johnstone PA (2009) Lymphedema: a primer on the identification and management of a chronic condition in oncologic treatment. CA Cancer J Clin 59(1):8–24

    Article  PubMed  Google Scholar 

  3. Petrek JA, Pressman PI, Smith RA (2000) Lymphedema: current issues in research and management. CA Cancer J Clin 50(5):292–307

    Article  PubMed  CAS  Google Scholar 

  4. Rourke LL, Hunt KK, Cormier JN (2010) Breast cancer and lymphedema: a current overview for the healthcare provider. Womens Health (Lond Engl) 6(3):399–406

    Article  Google Scholar 

  5. Greenslade MV, House CJ (2006) Living with lymphedema: a qualitative study of women’s perspectives on prevention and management following breast cancer-related treatment. Can Oncol Nurs J 16(3):165–179

    PubMed  Google Scholar 

  6. Bosompra K, Ashikaga T, O’Brien PJ, Nelson L, Skelly J, Beatty DJ (2002) Knowledge about preventing and managing lymphedema: a survey of recently diagnosed and treated breast cancer patients. Patient Educ Couns 47(2):155–163

    Article  PubMed  Google Scholar 

  7. Lee YM, Mak SS, Tse SM, Chan SJ (2001) Lymphoedema care of breast cancer patients in a breast care clinic: a survey of knowledge and health practice. Support Care Cancer 9(8):634–641

    Article  PubMed  CAS  Google Scholar 

  8. Paskett ED, Stark N (2000) Lymphedema: knowledge, treatment, and impact among breast cancer survivors. Breast J 6(6):373–378

    Article  PubMed  Google Scholar 

  9. Radina ME, Armer JM, Culbertson SD, Dusold JM (2004) Post-breast cancer lymphedema: understanding women’s knowledge of their condition. Oncol Nurs Forum 31(1):97–104

    Article  PubMed  Google Scholar 

  10. Ridner SH (2006) Pretreatment lymphedema education and identified educational resources in breast cancer patients. Patient Educ Couns 61(1):72–79

    Article  PubMed  Google Scholar 

  11. Thomas-MacLean R, Miedema B, Tatemichi SR (2005) Breast cancer-related lymphedema: women’s experiences with an underestimated condition. Can Fam Physician 51:246–247

    PubMed  Google Scholar 

  12. Fu MR, Chen CM, Haber J, Guth AA, Axelrod D (2010) The effect of providing information about lymphedema on the cognitive and symptom outcomes of breast cancer survivors. Ann Surg Oncol 17(7):1847–1853

    Article  PubMed  Google Scholar 

  13. Oehrli MD, Quesenberry CP, Leyden W (2010) 2010 Annual report on trends, incidence, and outcomes. Kaiser Permanente, Northern California Cancer Registry

  14. http://www.shop.lymphnet.org/product.sc?productId=339&categoryId=7. Accessed 21 Mar 2012

  15. Chew LD, Bradley KA, Boyko EJ (2004) Brief questions to identify patients with inadequate health literacy. Fam Med 36(8):588–594

    PubMed  Google Scholar 

  16. Cassileth BR, Zupkis RV, Sutton-Smith K, March V (1980) Information and participation preferences among cancer patients. Ann Intern Med 92(6):832–836

    PubMed  CAS  Google Scholar 

  17. Damian D, Tattersall MH (1991) Letters to patients: improving communication in cancer care. Lancet 338(8772):923–925

    Article  PubMed  CAS  Google Scholar 

  18. Hinds C, Streater A, Mood D (1995) Functions and preferred methods of receiving information related to radiotherapy. Perceptions of patients with cancer. Cancer Nurs 18(5):374–384

    Article  PubMed  CAS  Google Scholar 

  19. Gray RE, Fitch M, Greenberg M, Hampson A, Doherty M, Labrecque M (1998) The information needs of well, longer-term survivors of breast cancer. Patient Educ Couns 33(3):245–255

    Article  PubMed  CAS  Google Scholar 

  20. Lee TS, Kilbreath SL, Sullivan G, Refshauge KM, Beith JM (2010) Patient perceptions of arm care and exercise advice after breast cancer surgery. Oncol Nurs Forum 37(1):85–91

    Article  PubMed  Google Scholar 

  21. Mallinger JB, Griggs JJ, Shields CG (2005) Patient-centered care and breast cancer survivors’ satisfaction with information. Patient Educ Couns 57(3):342–349

    Article  PubMed  Google Scholar 

  22. National Lymphedema Network Position Papers. http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm. Accessed 21 Mar 2012

  23. http://kpsantaclaracancercare.org/find_information_by_diagnosis/breast/multidiscipbreastclin.php. Accessed 15 June 2012

  24. Coward DD (1999) Lymphedema prevention and management knowledge in women treated for breast cancer. Oncol Nurs Forum 26(6):1047–1053

    PubMed  CAS  Google Scholar 

  25. Paskett ED (2008) Breast cancer-related lymphedema: attention to a significant problem resulting from cancer diagnosis. J Clin Oncol 26(35):7–5666

    Article  Google Scholar 

  26. Randomized study of education with or without exercise and counseling in preventing lymphedema in women with stage I–III breast cancer who are undergoing axillary lymph node dissection. http://www.cancer.gov/clinicaltrials/search/view?cdrid=494652&version=HealthProfessional. Accessed 10 Feb 2012

  27. Tam EK, Shen L, Munneke JR, Ackerson LM, Partee PN, Somkin CP, Andre M, Kutner SE, Thiadens SR, Kwan ML (2012) Clinician awareness and knowledge of breast cancer-related lymphedema in a large, integrated health care delivery setting. Breast Cancer Res Treat 131(3):38–1029

    Article  Google Scholar 

  28. http://kpsantaclaracancercare.org/news_events/napbc/. Accessed 15 June 2012

  29. National lymphedema network, screening and measurement for early detection of breast cancer related lymphedema. http://www.lymphnet.org/pdfDocs/nlnBCLE.pdf. Accessed 21 Mar 2012

  30. http://qap.sdsu.edu/screening/breastcancer/guide/index.html. Accessed 13 June 2012

  31. Kwan ML, Ambrosone CB, Lee MM, Barlow J, Krathwohl SE, Ergas IJ, Ashley CH, Bittner JR, Darbinian J, Stronach K, Caan BJ, Davis W, Kutner SE, Quesenberry CP, Somkin CP, Sternfeld B, Wiencke JK, Zheng S, Kushi LH (2008) The Pathways Study: a prospective study of breast cancer survivorship within Kaiser Permanente Northern California. Cancer Causes Control 19(10):1065–1076

    Article  PubMed  Google Scholar 

  32. Kwan ML, Darbinian J, Schmitz KH, Citron R, Partee P, Kutner SE, Kushi LH (2010) Risk factors for lymphedema in a prospective breast cancer survivorship study: the pathways study. Arch Surg 145(11):63–1055

    Article  Google Scholar 

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Acknowledgments

We thank Janet E. Hasak and Kathie Vaughn, lymphedema patient-advocates affiliated with the National Lymphedema Network, and all BC LINK Study participants. This study was funded by the California Breast Cancer Research Program (15IB-0033). The contents of this article are solely the responsibility of the authors and do not necessarily represent the official views of the California Breast Cancer Research Program and the Kaiser Permanente Northern California Medical Care Program.

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Authors and Affiliations

  1. Division of Research, Kaiser Permanente Northern California, 2000 Broadway, Oakland, CA, 94612, USA

    Marilyn L. Kwan, Ling Shen, Julie R. Munneke, Emily K. Tam, Paula N. Partee, Carol P. Somkin & Lynn M. Ackerson

  2. Park Shadelands Medical Offices, Kaiser Permanente Northern California, 320 Lennon Lane, Walnut Creek, CA, 94598, USA

    Mary André

  3. San Jose Medical Center, Kaiser Permanente Northern California, 280 Hospital Parkway, San Jose, CA, 95119, USA

    Susan E. Kutner

  4. National Lymphedema Network, 116 New Montgomery Street, Suite 235, San Francisco, CA, 94105, USA

    Saskia R. J. Thiadens

Authors
  1. Marilyn L. Kwan
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  2. Ling Shen
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  3. Julie R. Munneke
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  4. Emily K. Tam
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  5. Paula N. Partee
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  6. Mary André
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  7. Susan E. Kutner
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  8. Carol P. Somkin
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  9. Lynn M. Ackerson
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  10. Saskia R. J. Thiadens
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Corresponding author

Correspondence to Marilyn L. Kwan.

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Kwan, M.L., Shen, L., Munneke, J.R. et al. Patient awareness and knowledge of breast cancer-related lymphedema in a large, integrated health care delivery system. Breast Cancer Res Treat 135, 591–602 (2012). https://doi.org/10.1007/s10549-012-2199-x

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  • DOI: https://doi.org/10.1007/s10549-012-2199-x

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