Physiotherapy practice in lymphoedema in South Africa: A survey

Researchers: Carys A. Rhodes, Corlia Brandt, Monique Keller

October 2023

What Is The Study About?

To describe the perceived knowledge of physiotherapists about lymphoedema and its management, the lymphoedema patient load seen by physiotherapists, and the current treatment approaches of physiotherapists in South Africa when managing lymphoedema.

Why Is This Important?

Lymphoedema has far-reaching implications not only for the patients with the condition but also for global economies. If left untreated, lymphoedema can result in cellulitis, lymphangitis and in rare cases lymphangiosarcoma. These conditions can lead to severe illness, amputation, and even death. Patients with lymphoedema can also suffer from psychological problems and a decreased quality of life related to living with the condition. The economic burden on patients with lymphoedema cannot be overlooked, as the condition affects productivity, leads to time off work, and can be expensive to manage.

Cancer and the treatment thereof remain one of the leading causes of secondary lymphoedema. The disease and treatments such as surgery and radiation, can result in scarring, fibrosis or complete destruction of lymphatic tissue, leading to lymphoedema. The number of new cancer cases in South Africa in 2020 was 108 168 and this number could indicate a potentially growing population with cancer-related lymphoedema in South Africa. 

What We Know…

Lymphoedema is a chronic condition characterised by the progressive swelling of one or more limbs, trunk, head, neck or genitalia, and can be from a primary (congenital) or secondary cause. The condition’s prevalence is estimated to be 140 to 200 million people worldwide, but as an under-reported and under-diagnosed condition, this number could be much higher. The exact number of people with lymphoedema in South Africa is unknown, but it is estimated that around 1.3 m people have the condition in South Africa, based on the World Health Organization (WHO) statistics released in 2014.

Treatment of lymphoedema includes both conservative and surgical interventions. Conservative treatments such as complete decongestive lymphatic therapy (CDLT), which includes manual lymph drainage, compression therapy by bandaging and garment prescription, remain the most common form of treatment for lymphoedema. Lymphoedema management falls under the scope of physiotherapy in South Africa and thus implies that it should be included in undergraduate physiotherapy curricula.

What Was Discovered…

Perceived knowledge of physiotherapists on lymphoedema management - Physiotherapists in South Africa seem to have a fair understanding of the management of lymphoedema, based on the results from the questionnaire. While a small percentage of the respondents rate their perceived knowledge as ‘good’ or even ‘expert’, the majority of respondents showed a worrying lack of perceived knowledge on important topics such as pathology, characteristics, causes, stages, risk factors, treatment options, and complications relating to lymphoedema. Although 97.3% of physiotherapists in our study indicated that they knew that physiotherapists could offer lymphoedema management, only 49.7% knew how to treat the condition.

The dearth of knowledge among physiotherapists about lymphoedema could be explained by the level of education received on the topic, both at an undergraduate level and at a postgraduate level or it could be because of the disinterest of physiotherapists in treating the population and furthering their education in the field. The minimum training standards for physiotherapists in South Africa, as set out by the HPCSA, require undergraduate training in oedema assessment and management. However, comprehensive management of lymphoedema remains a post-graduate course.

Lymphoedema patient load being seen by physiotherapists in a clinical setting –

Physiotherapists are, however, still receiving referrals of patients for lymphoedema management from multiple multidisciplinary team members. Oncologists, general practitioners, surgeons and other healthcare professionals refer patients. This indicates that a multidisciplinary approach to lymphoedema management is needed, where physiotherapists are regarded as key role players. However, 61% of physiotherapists report receiving fewer than one new lymphoedema referral in a month. Although patients with lymphoedema are being referred to physiotherapy for treatment, the number of patients who are being referred is surprisingly low considering the high estimated prevalence of this condition in South Africa. It appears that a poor understanding of lymphoedema as a condition and possible management options within the healthcare profession, as well as a lack of knowledge and awareness in the patient population are contributing to this discrepancy.

With poor referrals, lymphoedema patients make up very little of physiotherapists’ patient load in a month across South Africa. Most physiotherapists (83.3%) work in a more generalised practice, and the time dedicated to managing patients with lymphoedema takes up less than 20% of their average workday.  Physiotherapists predominantly manage patients with lymphoedema who are older than 18 years of age. Only a few physiotherapists are seeing children and adolescents for lymphoedema management.

Of the physiotherapists managing lymphoedema patients, most of the patient load is made up of lymphoedema from a secondary cause. While 59% of physiotherapists identify managing primary lymphoedema patients, they make up a small percentage of their patient load. Consistently across the literature, cancer is the biggest cause of secondary lymphoedema in patients seen by therapists. The same is found within this data set, with 93.8% of 131 participants identifying cancer as the biggest cause of their patients’ lymphoedema. The data show that physiotherapists see a broad range of patients with lymphoedema of the upper limb, lower limb, trunk, head and neck, and genitalia. However, lymphoedema of the upper and lower limb are the most common areas treated.

Current physiotherapy practice in the management of lymphoedema - While looking at the current practices of physiotherapists in the management of lymphoedema, the results of our study were compared with international standards set by different guidelines such as the International Lymphoedema Framework and the ONS Guidelines.

With regard to the current treatment techniques used by physiotherapists in South Africa, we see that very few therapists follow international guidelines. Only 31% physiotherapists use CDLT to manage patients with lymphoedema. This is a concerning finding with CDLT being the gold standard of lymphoedema management. It seems that physiotherapists need to have the correct education or skill set to manage lymphoedema appropriately.

The Future/ Possible Solutions…

The lack of perceived knowledge in the field, the poor referral rate, and the inadequate management of patients with lymphoedema in South Africa highlight that more needs to be carried out to promote the management of lymphoedema. There appears to be a diverse range of patients who require care, but at this stage, very few physiotherapists are available to offer the gold standard of lymphoedema management. This study shows that more work needs to be performed in South Africa in the field of lymphoedema management in terms of education, awareness and access to care from a physiotherapy perspective.