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The clinical and demographical characteristics of Turkish pediatric lymphedema patients: a multicenter study
Pınar Borman1, Ayşegül Balcan2, Sibel Eyigör3
1Department of Physical Medicine and Rehabilitation, Ankara City Hospital, University of Health Sciences, Ankara Turkey.
Insights
Pediatric lymphedema often affects lower extremities and presents with advanced disease, yet over half of children receive no treatment. Enhanced education for families and healthcare providers is crucial for early intervention and improved management of pediatric lymphedema.
Area of Science:
- Pediatric Medicine
- Vascular Medicine
- Genetics
Background:
- Pediatric lymphedema presents a significant burden, necessitating better clinical understanding.
- This study aimed to characterize pediatric lymphedema cases in Turkey.
Purpose of the Study:
- To evaluate the clinical and demographic features of pediatric lymphedema patients.
- To identify treatment gaps and educational needs in pediatric lymphedema care.
Main Methods:
- Collected socio-demographic and clinical data from 122 pediatric patients across 7 Turkish centers.
- Recorded lymphedema site, stage, duration, complications, and therapies received.
- Assessed patient and family education on self-management techniques.
Main Results:
- 92% had primary lymphedema, commonly affecting lower extremities.
- 18% of cases were associated with genetic syndromes; 17% experienced complications like cellulitis.
- Despite advanced disease (Stage 2), only 40% received treatment, primarily compression therapy; self-care education was absent.
Conclusions:
- Pediatric lymphedema shows a balanced gender distribution, predominantly affecting lower limbs.
- A significant treatment gap exists, with over half of affected children not receiving adequate care.
- Educational initiatives for families and healthcare professionals are vital for early referral and prompt management.
Background:
Reducing lymphedema-associated burden and disability in the pediatric setting requires improved awareness and understanding clinical properties of the lymphedema. The aim of this study was to evaluate the clinical and demographic characteristics of patients with pediatric lymphedema presented to different lymphedema centers in Turkey.
Methods:
The socio-demographic and clinical characteristics of the children including age, gender, presence of genetic syndromes, duration of edema, site and stage of lymphedema and the received therapies were determined. Parental and children education on self-management techniques were recorded.
Results:
A total of 122 children (female: 66, male: 56) with a mean age of 120.7 ± 71.2 months were included from 7 centers. Of them; 92% had primary, 8% had secondary lymphedema mostly due to infection and trauma. Lymphedema was part of a syndrome in 18% of the children. The most common site of involvement was the lower extremity, followed by upper extremity and genital involvement. Lymphedema was complicated in 17 % of children, mainly with a clinical picture of cellulitis, infection, and pain. The median duration of lymphedema was 41 (5-216) months. Although most of the children had stage 2 lymphedema, only 40% of them received treatment. The most commonly received treatment was compression therapy. No family or child was educated for self- care management before.
Discussion:
In conclusion, pediatric lymphedema has a comparable gender distribution and usually involves the lower extremities. Although most of the children had advanced disease, more than half of the patients did not receive any treatment indicating the unmet need for management of lymphedema. The education of patients and/or children about self-management methods were lacking. We suggest educational activities for both families of children with lymphedema and health care providers, in order to facilitate early reference to lymphedema units and to receive prompt preventive and therapeutic approaches for this suffering condition.
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