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1
The
importance
of
education
on
breast
cancer
related
lymphedema
Pinar Borman MD, Aysegul Yaman MD, Sina Yasrebi MD, Oya Özdemir MD,
Alp Çetin MD.
University of Hacettepe Faculty of Medicine Department of Physical Medicine
and Rehabilitation, Sihhiye, Ankara, Turkey, 06100.
Coorespondence: Prof. Dr Pınar Borman
Hacettepe University Medical Faculty
Dept of PMR, Ankara, Turkey
e-mail: [email protected]
phone: 90.312.3094142
fax: 90.312.4186363
2
Introduction
Improvements in early detection and treatment of breast cancer have led a growing number of
survivors. The maintenance of overall health and quality of life are major concerns since side
effects of cancer treatments may arise and can result in significant long term physical and
psychological disabilities (1,2).
Lymphedema is an abnormal accumulation of protein-rich fluid within the intertistial tissue
that can occur after breast cancer surgery or radiation therapy. Lympedema affects up to 50%
of breast cancer patients and substantially increase their postoperative medical costs. The
prognosis for these patients, is worse and treatment is more costly when the lymphedema is
not diagnosed and treated in the earlier stages. Although breast cancer related lymphedema
can lead to physical emotional and psychological challenges and impaire quality of life, it is
under-recognized and under- treated (3,4). Therefore the awareness of the condition and
sufficient education of the breast cancer survivors are of great importance.
Recent studies have shown a general lack of knowledge and awareness regarding
lymphedema risk and risk reduction guidelines (5-12). Previous studies have also indicated
that patients’ knowledge and education were shown to be correlated with risk of developing
the condition (8,9,12). We aimed to determine the knowledge and education of breast cancer
patients who referred to a tertier university hospital, Physical Medicine and Rehabilitation
(PMR) Department for lymphedema rehabilitation.
MATERIALS AND METHODS
Participants were all women and recruited from PMR department among the breast cancer
survivors who were admitted for diagnosis and or treatment of lymphedema between June
2013 and April 2014. The demographic and clinical characteristics including age, literacy,
duration of surgery, type of surgery, body mass index, duration and site of lymphedema, stage
of lymphedema were recorded. Each participant was asked to complete a survey to assess
lymphedema status, knowledge and education about lymphedema and we also aimed to
determine the related factors with lymphedema in their first visit. The duration of
lymphedema, the site of lymphedema (proximal, distal), the grade of lymphedema (subclinic,
reversible, spontaneous irreversible, elephantiasis), the stage of lymphedema according to
girth measurements (stage 1,2,3), were recorded. The positivity of Stemmer sign was checked.
3
The patients responded to questions in the survey, asking whether they have received
information about awareness of lymphedema or whether they have educated for reducement
of the risk of lymphedema after the breast cancer surgery. The patients were answered as yes
or no. In addition quality of life of the patients was assessed with EORTC Quality of life
Questionnaire Breast cancer module (EORTC-QOL-C30) (13) questionnaire and functional
status was determined by Disabilities of Arm Shoulder and Hand (DASH) (14) questionnaire.
All the assessments were performed by an experienced lymphedema specialist. The study was
approved by the institutional ethical board.
Statistical analysis: Descriptive statistics were expressed with mean +standard deviation,
median and percentage values. Groups were compared with student’s t test or Mann Whitney
U test or chi square analysis. All tests of statistical significance were two sided and
considered statistically significant at p<0.05. Analyses were conducted by SPSS 13.0
statistical package.
RESULTS
Seventy-one patients who had admitted to lymphedema rehabilitation unit between June 2013
and April 2014, were recruited to the study. All patients were women. The mean age and
duration of surgery were 52.03+9.9 years (28-77) and 32.8+27.6 months (-). Most women
were diagnosed with mild to moderate stage breast cancer 41 (57.7%) patients had grade 1, 27
(38%) patients had grade 2 and 3 (4.2%) patients had grade 3 lymphedema. Among the
participants, only 15 (21.1%) had reported that they have received information or education
about lymphedema. 56 patients (78.9%) did not informed or trained about the development of
lymphedema. The demographic and clinical characteristics in regard to lymphedema
knowledge and, education, are shown in Table 1.
The degree of lymphedema according to girth measurements, and duration between breast
cancer surgery and lymphedema were lower in patients that have informed or educated about
lymphedema as compared to the patients that have not been informed (p<0.05). Also the
number of patients having pitting edema and having pain in the area of lymphedema were
higher in patients that did not
DISCUSSION
Our intervention was designed to identify the level of awareness and education about breast
cancer related lymphedema in survivors, admitted to a tertiary university hospital in a
4
developing country. The frequency of postoperatively educated patients about the risk of
lymphedema was only 21%.
The educated patients have a delayed progression of
lymphedema and lower stages than in patients lacking awareness of lymphedema. Also the
educated patients shortly after their surgery had higher quality of life scores indicating a nonimpaired wellbeing.
Previous studies have assessed lymphedema knowledge or awareness and reported average to
low knowledge levels (5-9,15). Bosompra et al measured lymphedema awareness and
reported higher scores of awareness among the patients reporting swelling compared with
subjects having no swelling (15). Lee et al conducted a study assessing lymphedema
knowledge by asking prevention and care about lymphedema to breast cancer survivors and
found a high rate of patients having lymphedema knowledge, contrary to our results (16). This
difference can be explained with cultural and developmental degree of different populations.
A more recent study reported that women who received lymphedema information had higher
knowledge scores and lower lymphedema symptoms compared to those who did not receive
information, again resembling our data (17,18).
These results suggest that approaches to lymphedema education can be potentially beneficial
in improving awareness on lymphedema risk and risk reduction strategies among breast
cancer patients diagnosed and treated in surgery wards (8,10,18).
The small study group and a cross sectional design of the study, are the limitations of our
study. Also the non quantitative assessment of lymphedema knowledge may also be
considered as another limitation. But as far as we have known this is the first study evaluating
the knowledge about lymphedema among breast cancer survivors in our region which may
highlighten the unmet need for education in a developing country for the awareness of
lymphedema and may lead to improve health care delivery settings in order to enhance the
quality of life of these patients.
In conclusion there is a lack of awareness of the lymphedema or risk of lymphedema, and an
unmet need sufficient education and knowledge among breast cancer survivors, especially in
developing countries. We believe that education programs about lymphedema and risk
reduction methods after the breast surgery are strongly needed. There is also a need for the
continuing education of health care providers and surgeons for the importance and early
diagnosis of lymphedema in order to better inform and educate breast cancer survivors and
their families. Future studies comparatively assessing lymphedema knowledge and
5
monitoring effects of education between different cultures will enhance the experiences and
will help to standardize this education in developing countries.
REFERENCES
1. Lawenda BD, Mondry TE, Johnstone PA. Lymphedema: a primer on the identification
and management of a chronic condition in oncologic treatment. CA Cancer J Clin
2007;57:43-66.
2. Rourke LL, Hunt KK, Cormier JN. Breast cancer and lymphedema: a current
overview for the healthcare provider. Omen’S health 2010;6(3):399-406.
3. Shah C, Arthur D, Riutta J, Whitworth P, Vicini FA. Breast-cancer related
lymphedema: a review of procedure-specific incidence rates, clinical assessment aids,
treatment paradigms and risk reduction. Breast Journal 2012;18(4):357-61.
4. Gartner R, Jensen MB, Kronborg L, Ewertz M, Kehlet H, Kroman N. Self-reported
arm-lymphedema and functional impairment after breast cancer treatment- a
nationwide study of prevalence and associated factors. The Breast 2010,19:506-15.
5. Radina ME, Armer JM, Culbertson SD, Dusold JM. Post breast cancer lymphedema:
understanding womens’ knowledge of their condition. Oncol Nurs Forum 31(1):97104.
6. Gray RE, Fitch M, Grenberg M, Hampson A, Doherty M, Labrecque M. The
information needs of well, longer term survivors of breast cancer. Patient Educ Couns
1998;33(3):245-255.
7. Runowicz CD. Lymphedema: patient and provider education: current status and future
trends. Cancer 1998;83(suppl12):2874-2876.
8. Ridner SH. Pretreatment lymphedema education and identified educational resources
in breast cancer patients. Patient Educ Couns 2006;61(1):72-79.
9. Fu MR, Chen CM, Haber J, Guth AA, Axelrod D. The effect of providing information
about lymphedema on the cognitive and symptom outcomes of breast cancer
survivors. Ann Surg Oncol 2010;17(7):1847-1853.
10. Paskett ED, Stark N. Lymphedema: Knowledge, treatment and impact among breast
cancer survivors. Breast J 2000;6(6):373-78.
11. Greenslade MV, House CJ. Living with lymphedema: a qualitative study of women’s
perspectives on prevention and management following breast cancer related treatment.
Can Oncol Nurs J 2006;16(3):165-179.
6
12. Kwan ML, Shen L, Munneke JR, Tam EK, Partee PN, et al. Patient awareness and
knowledge of breast cancer related lymphedema in a large,integrated health care
delivery system. Breast Cancer Res Treat 2012;135:591-602
13. Demirci S, Eser E, Ozsaran Z, Tankısı D, Aras AB, et al. Validation of the Turkish
versions of EORTC-QoL-C30 and BR23 modules in breast cancer patients. Asian
Pacific J Cancer Prev 2011;12(5):1283-7.
14. Koldas-Dogan S, Ay S, Evcik D, Baser O. Adaptation of Turkish version of the
questionnaire of the Quick disability of the arm, shoulder and hand (Quick DASH) in
patients with carpal tunnel syndrome. Clin Rheumatol 2011;30:185-91.
15. Bosompra K, Ashikaga T, O’Brien PJ, Nelson L, Skelly J, Beatty DJ. Knowledge
about preventing and managing lymphedema: a survey of recently diagnosed and
treated breast cancer patients. Patient Educ Couns 2002;4782):155-163.
16. Lee YM, Mak SS, Tse SM, Chan SJ. Lymphedema care of breast cancer patients in a
breast care clinic: a survey of knowledge and health practice. Support Care Cancer
2001;9(8):634-641.
17. Nielsen I, Gordon S, Selby A. Breat cancer realted lymphedema risk reduction advice:
a challenge for health professionals. Cancer Treat Rev 2008;34(7):621-628.
18. Tam EK, Shen L, Munneke JR, Ackerson LM, Partee PN, et al. Clinician awareness
and knowledge of breast cancer related lymphedema in a large, integrated health care
delivery setting. Breast Cancer Res Treat 2012;131:1029-1038.
7
Table 1: The demographic and clinical characteristics of the patients in regard to
lymphedema education
Age (years) (mean+SD)
BMI (kg/m2) (mean+SD)
Education
illiterate
Primary
Secondary-lycee
university
Duration
of
surgery
(mean+SD) (years)
smoking
Surgery
Mastectomy
Radical mastectomy
Modified radical
lumpectomy
Duration of lymphedema
(month)(mean+SD)
Site of lymphedema
Proximal
distal
Pitting
Positive
negative
Pain in area of lymphedema
Positive
negative
Type of lymphedema
Subclinical
Reversible
Spontaneous irreversible
elephantiasis
Stage according to girth
measure
1
2
3
Stemmer sign
Positive
negative
Duration between surgery and
lymphedema (mean+SD)
median
DASH
EORTC-QOL-30 (global health)
Patients
educated
for
lymphedema
(n=16)
48,44± 9,187
29,58± 4,60
Patients not educated
for
lymphedema
(n=57)
p
53,26± 9,595
29,61 ± 4,50
0.778
0.980
2
3
6
5
5.1±3.9
1
20
18
18
4.9±4.2
0,312
3
7
0,506
2
0
13
11
1
42
0,704
18,60± 30,69
18,87± 28,39
0.98
10
11
21
36
0,170
10
6
17
40
0,017
5
11
19
38
0,025
6
10
0
37
18
1
0,153
6
10
0
36
19
2
0,047
11
5
31,81±32,65
20
36
26,95±41,65
0.62
24
40.6±26.4
59.9±27.4
11
36.9±18.7
61.01±20.7
0.86
0.55
0,816
0,019