Lymphoedema is a chronic swelling of tissue caused by disruption to the normal functioning of the lymphatic system. It may be developmental (primary lymphoedema) or acquired (secondary lymphoedema). The body's extremities, such as an arm or a leg, are the most commonly affected areas (BMJ Best Practice, 2022). Globally, the most prevalent cause of secondary lymphoedema is a filarial nematode infection, affecting nearly 657 million people in 39 countries worldwide (World Health Organization, 2024). However, this is rare in developed countries and secondary lymphoedema is more often a result of malignancy.
Both primary and secondary lymphoedema affect the patient's health-related quality of life (HRQOL) in multiple ways. There are several physical, emotional and mental impacts of lymphoedema, and these often vary depending on the severity of the condition.
The pain experienced by patients with lymphoedema can restrict mobility and activities of daily living, such as washing and dressing. Skin is significantly affected by the condition as it becomes hardened and is vulnerable to cellulitis. The nature of the chronic swelling with no realistic cure becomes increasingly restrictive over time, causing chronic discomfort and fatigue. The secondary physical effects of lymphoedema originate from decreased mobility and a lack of physical activity.
Emotional distress is common among people living with this condition because of the distinct and visible changes occurring in their body. It also stems from the knowledge that there is no cure for lymphoedema, it can only be managed to minimise symptoms. This may lead to anxiety, depression and low self-esteem as the patient might feel embarrassed by their appearance. When symptoms show little to no sign of improvement, patients can become vulnerable to feelings of hopelessness and, as a result, become socially isolated and withdrawn. It is essential for healthcare professionals to check in with their patients and discuss possible support groups for patients lymphoedema, including support for their mental health, such as counselling.
The symptoms of lymphoedema typically consist of unilateral limb swelling, with pitting oedema commonly occurring in the early stages of the disease. The condition can present an issue with functionality in terms of physical and psychosocial wellbeing, which impacts the patient's quality of life. The treatment for lymphoedema management also can cause some barriers to quality of life, given the nature of compression garments or pneumatic compression devices.
Using the correct compression garments
Ensuring a proper fit of compression garments is essential for managing lymphoedema effectively, as it helps to reduce swelling, improve lymphatic drainage and prevent further complications.
Accurate measurements
The first step in making sure that the compression garments fit well is taking precise measurements of the affected limb(s) to ensure the garment provides the correct amount of pressure. Using a flexible tape measure, measurements should be taken at various points along the limb, including at the wrist or ankle, mid-limb and at the upper part of the arm or leg. Healthcare professionals should be able to guide patients in this process to ensure accuracy.
Selecting the right compression level
Compression garments are available in different pressure levels, typically measured in millimetres of mercury (mmHg). The compression level should match the severity of lymphoedema.
For mild lymphoedema, a lower compression level (15–20 mmHg) may be best, while more severe cases may require a higher level of compression (30–40 mmHg). A healthcare provider or lymphoedema therapist can recommend the appropriate pressure depending on the case.
Proper fit and comfort
While the compression garment must fit tightly, it should not cause discomfort or restrict circulation. If the garment is too tight, it can cause additional swelling and if it is too loose, the garment may be ineffective. The compression garment must cover the entire affected area, including any additional areas with swelling, and must be worn as prescribed.
Follow up and adjustment
Over time, lymphoedema may fluctuate, and garments may need adjustment. Regular follow ups with healthcare providers ensure that the garment continues to fit properly and deliver the desired benefits. Adjustments may involve resizing or changing the compression level as the condition progresses or improves.
Patient education
Compression garments, when fitted correctly and worn consistently, play a crucial role in managing lymphoedema and improving quality of life. Patients should be educated on how to put on and remove compression garments, as well as how to care for them to maintain their elasticity and effectiveness. Some patients may inevitably need surgery as compression garment alone might not be enough. The fact that there is no cure for lymphoedema may have a detrimental impact on the patient's mental health. The best approach requires long-term engagement and collaboration between patients and healthcare providers to manage the symptoms as well as possible.
Measuring health-related quality of life
Healthcare professionals use several tools for measuring the HRQOL in patients with lymphoedema. This self-reported feedback is essential to evaluate the impact of this long-term condition on the physical, psychological and emotional wellbeing of the patient.
A systematic review by Lim et al (2022) concluded that while there is no ideal tool for HRQOL measurement at present, the Lymphedema Quality of Life Questionnaire-Arm (LYMQOL) and Upper Limb Lymphoedema 27 (ULL–27) can be helpful for determining HRQOL in this patient cohort. The LYMQOL was created in 2010 in the UK by Dr Vaughan Keeley and his team. It consists of separate tools for arm or leg lymphoedema, each with 24 and 23 items, respectively. The questionnaire was found to be ‘easy to fill out’ according to patient feedback, with important items covered by the questions (Keeley et al, 2024). Lim et al (2022) found that with regards to construct validity, there was no correlation between initial limb volume and LYMQOL score, with a limited number of responses given at 3 and 6 months following initial assessment. This presented a significant drawback of this tool as responsiveness is noted to be one of the major advantages of a disease-specific rather than a generic questionnaire. Lim et al (2022) concluded that such poor responsiveness was known to lead to false-negative outcomes on the effect of treatment.
The ULL-27 was developed in 2002 in France. The tool consists of 27 questions on upper limb lymphoedema across three domains: physical functioning, psychological functioning and social functioning. The tool is noted to be reliable, valid and with a good responsiveness rate (Lim et al, 2022). However, it is not relevant to the large number of patients with lower limb lymphoedema.
Cemal et al (2013) attempted to identify HRQOL outcomes in patients while exploring the options for low limb lymphoedema treatments in patients with the condition as a secondary presentation to cancer. They found a deficit of high-quality studies on the topic, although they identified possible HRQOL outcomes that required a tailored assessment to assess HRQOL in patients with lower limb lymphoedema. Cemal et al (2013) found that complete decongestive physiotherapy appeared to be associated with better quality of life, where the treatment led to reduced pain, fatigue, anxiety and lymphoedema.
Cemal et al (2013) determined that weightlifting did not improve HRQOL, while use of compression bandaging led to significant improvements in patients who had the condition secondary to ulcers, rather than those living with cancer. Patients who had ongoing active treatments were seen to benefit the most in terms of HRQOL improvements. There was no improvement in disability and daily functioning because of inguinal node dissection, whether there was lymphoedema or not (Cemal et al, 2022). Having a favourable prognosis was associated with a shift in the patient's sense of appreciation and survival, which had a beneficial effect on their perceived level of HRQOL in relation to mental health.
Landers and Holyoake (2022) looked at quality of life among palliative care patients. They noted that there were limited options to treat lymphoedema in this cohort, yet an underused but helpful surgical procedure involving subcutaneous needle drainage of the excess fluid could help to improve HRQOL. Their multicentre non-randomised observational trial used a validated questionnaire before and after the procedure. A group of 31 patients received a total of 32 subcutaneous needle drainage procedures across three sites. Average drainage of excess fluid was 5.5 litres. Following the procedure, the team noted a significant improvement across all domains apart from appearance and concluded that subcutaneous needle drainage may improve quality of life in palliative patients with lower limb oedema.
Jørgensen et al (2021) explored the impact of lymphedema on HRQOL in the 10 years following breast cancer treatment. Like many other researchers, the team noted the paucity of research on this subject area. In patients overcoming breast cancer, Jørgensen et al (2021) found that an extended time since the surgery and a younger age were both associated with a higher risk of swelling as reported by the patients. The incidence of such swelling was noted to negatively impact mental health and adjustment to life following treatment for breast cancer in the shorter term. Other studies examined by Jørgensen et al (2021) also found patients in the younger age range tended to report worse HRQOL.
Jørgensen et al (2021) determined that lymphoedema following breast cancer was associated with negative quality of life outcomes especially within the areas of physical health and psychosocial functioning. A younger age tended to be linked to worse levels of coping and adjustment on an emotional level, and a higher body mass index worsened HRQOL outcomes. The affected arm was also a significant factor as to whether someone had a better or worse quality of life. If the affected arm was the dominant arm, there was a higher risk of worse outcomes in physical and psychosocial functioning and thus a poorer quality of life. Jørgensen et al (2021) summarised that in this patient cohort lymphoedema affects quality of life according to the amount of extremity immobility and disability the person experienced from their condition. Those with worse swelling, weakness, tightness, heaviness, stiffness, pain and tingling were found to have worse HRQOL. The psychosocial impact is significant, with the condition often occurring in younger women who then may be more likely to experience body image anxieties in conjunction with their physical symptoms/dysfunction.
Cho et al (2023) explored the HRQOL of people in recovery from gynaecological cancer whereby their lymphoedema was experienced in the lower limbs. The team carried out a cross-sectional study where experience of distress, depression, body image concerns and HRQOL were all assessed in this patient cohort.
The team found that the most common symptoms which caused distress among patients with lower limb lymphoedema were lower extremity oedema, tightness and stiffness. HRQOL was found to be worse in such cases of symptom-related distress, greater body image dissatisfaction, higher grade of lymphoedema and lengthier durations of lower limb lymphoedema. Symptom distress had the most significant impact on HRQOL. Cho et al (2023) summarised that educating survivors of gynaecologic cancer to assess lower limb lymphoedema-related problems and assisting them with symptom management could improve distress levels, while teaching the patient physical exercises to overcome discomfort may help to improve HRQOL.
Conclusions
Overall, impairment of physical functions and the associated effect on psychosocial functioning as a result of lymphoedema can significantly impact HRQOL. Tools to measure HRQOL in patients with lymphoedema may need further development, while solutions can be devised for reducing symptom-related distress, improving patient education for symptom management, and ensuring the best treatment for the physical dysfunction. A collaborative approach between clinician and patient can lead to the most effective management and treatment of the condition. A focus on the biopsychosocial model of care can help to address concerns related to the impact of lymphoedema on HRQOL.