Presentation delivered by Pinar Borman at the 2014 International Lymphoedema Framework conference in Glasgow.

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

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

3. Introduction
• 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.

4. Introduction
• 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.
• Therefore the awareness of the condition and
sufficient education of the breast cancer
survivors are of great importance.

5. Introduction
• Recent studies have shown a general lack of
knowledge and awareness regarding
lymphedema risk and risk reduction guidelines
• Previous studies have also indicated that
patients’ knowledge and education were
shown to be correlated with risk of developing
the condition.

6. aim
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.

7. Materials and Methods
• Participants were 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.

8. Materials and Methods
• 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 survey comprised;
• Have you ever heard breast cancer-related
lymphedema and/or get an education about
Lymphedema or risk reduction techniques?

9. Hacettepe Üniversitesi Tıp Fakültesi Fizik Tedavi ve Rehabilitasyon Anabilim Dalı
Lenfödem Değerlendirme Formu
Hastanın Adı soyadı: Protokol No:
Gönderen Dr:
Yaş: Medeni Hali:
Adres: Tel:
Eğitim Durumu:
Mesleği:
Yaşam şekli: ailesi/eşiyle yalnız bakıcıyla diğer akrabalarla bakımevinde
Geçirilmiş cerrahi
Kullandığı ilaçlar: Reçeteli: Reçetesiz:
Dominant el:
Boy: Kilo:
Sigara: Alkol Düzenli egzersiz:
Hobiler:
Özgeçmişi:
Ca Özgeçmişi
Cerrahi tipi: Radikal mastektomi modifiye radikal mastektomi: lumpektomi
Lenf nod disseksiyonu (adet)
Patoloji:
Evre:
PR: ER:
Ek tedaviler Tarih
Kemoterapi:
Radyoterapi
Preoperatif hasta eğitimi
Beklenen duysal değişiklikler hakkında bilgi verildi mi?
Lenfödem uyarıları yapıldı mı?
Postür eğitimi verildi mi?
Omuz hareket açıklığı rehberi öğretildi mi?
Tutulan üst ekstremite EHA programı
Postoperatif gün Omuz fleksiyon abdüksiyon İç/dış rotasyon
1-3 gün 45 45 Tolerans sınırında
4-6 gün 45-90 45 Tolerans sınırında
7 gün-drenler alındığında toleransa göre glenohumeral ekleme nazik germe
Postoperatif değerlendirme
Hastanın şikayeti:
Ağrı yeri Ağrı şiddeti (VAS):
EHA kısıtlılık: yeri:
Aksiller web sendromu:
Ciltte lezyon:
Postür değişikliği:
Motor defisit:
Duyu değişiklikleri (hipersensitivite/hipoestezi/ uyuşukluk/parestezi):
Lenfödem Sorgulaması
Primer: sekonder:
Lenfödem başlama yeri: proksimal: distal:
Ekstremitede ağırlık hissi/rahatsızlık:
Ne kadar süredir lenfödem var? (ay)
Lenfödemli bçlgede ağrı var mı?
Lenfödemli bölgede hiç enfeksiyon gelişti mi? Evet Hayır
Lenfödemli bölgede hiç akıntı oldu mu? Evet: Hayır

10. Materials and Methods
• 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.

11. Materials and Methods
• 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
Have you ever heard breast cancer-related lymphedema and/or
get an education about Lymphedema or risk reduction
techniques?

12. Materials and Methods
• 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)
questionnaire
• Functional status was determined by Disabilities
of Arm Shoulder and Hand (DASH) questionnaire.
• All the assessments were performed by an
experienced lymphedema specialist. The study
was approved by the institutional ethical board.

13. 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.

14. Results
• 71 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.

15. Results
• 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

16. Results
• 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.

17. The demographic and clinical characteristics in regard to
lymphedema knowledge and, education

18. The lymphedema status in regard to lymphedema knowledge and,
education

19. 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 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 non-
impaired wellbeing.

20. Discussion
• Previous studies have assessed lymphedema
knowledge or awareness and reported average to
low knowledge levels
• Bosompra et al measured lymphedema
awareness and reported higher scores of
awareness among the patients reporting swelling
compared with subjects having no swelling.
• 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

21. Discussion
• 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.

22. Discussion
• 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

23. Discussion
• 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
• may lead to improve health care delivery settings in
order to enhance the quality of life of these patients.

24. Conclusion
• 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.

25. Conclusion
• 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 the
lymphedema knowledge and monitoring effects
of education between different cultures will
enhance the experiences and will help to
standardize this education in developing
countries.