Dedicated to Lymphedema Patients and the Therapists Who Treat Them
THE NATIONAL BURDEN OF LYMPHEDEMA
Although lymphedema has been receiving an increasing amount of scientific attention in recent years, the extents of its impact on the quality of patient's lives and its burden on society have not been appreciated.
The impact of lymphedema is felt immediately by the patient, who suffers from a debilitating swelling of an arm, leg, breast or torso, the pain that accompanies the swelling, impairment of physical activities, psychological and social problems and frequent infections requiring emergency treatment. The burden on society is felt immediately by increased cost of treating preventable infections and long term by having to support the disabled patient who may no longer be able to make a living.
Treatment of lymphedema has been shown to reduce the incidence of recurrent cellulitis, and to retard the progression of lymphedema to harder-to-treat stages. It is therefore a very effective way to reduce the burden of lymphedema on the patient as well as the nation.
1. Incidence of Lymphedema (Weiss 2004-5)
Onset of lymphedema is shown to vary as a function of the method of measurement and the causative therapeutic procedure. Toxic effects of radiotherapy do not become fully evident until many years after treatment. Using sensitive lymphoscintigraphic measures of lymphedema, Campisi 2003 shows early effects of breast cancer treatment at 3-6 months (range <1 to 24 months). The delayed effects of radiotherapy are demonstrated [Pierquin 1986] with median onset at 7 (range 2-37) months with surgery alone, 12 (1-52) months with surgery and radiation and 25 (6-156) months with radiation alone. Other researchers demonstrate medians between 1 and 2 years, with maximum times of onset of 3 to 10 years for mixed cohorts. Swelling after breast cancer treatment can occur at a number of sites, and the restriction of measurements to one particular site such as the forearm, upper arm or entire arm and hand results in an underestimation of the incidence of lymphedema. Arm swelling may account for only about half of the patient-reported swelling [Bosompra et al 2002].
Other reported sites include the breast, chest, underarm and back. But measurement of these sites is very difficult, and so remains largely unreported. Breast lymphedema incidences of 70% using measurement of dermal swelling have been demonstrated [Rönkä 2004] while clinical examination detects only 35% in the same cohort. Changes in the mix of breast cancer surgery and radiotherapy over the last 50 years have resulted in a change in the incidence of lymphedema, since each therapy has a different associated morbidity. Halsted Radical Mastectomies with and without radiotherapy, the standard until the 1970's, resulted in upper limb lymphedema rates of 22-44% without and with radiotherapy. With the ascendancy of the less radical Modified Radical Mastectomy in the 1970's and 1980's lymphedema rates fell to 19-29% without and with radiotherapy [Schünemann & Willich 1997]. The 1990's brought Breast Conserving Surgery from a small percentage to approximately half of the surgeries performed [Yoshimoto et al 2004] with a further drop in upper limb lymphedema rates to 7-10% without and with radiotherapy [Schünemann & Willich 1997].
Breast lymphedema started to receive attention in 1982 with Kissin reporting clinical rates of 8% and Clarke reporting rates of 41% using skin measurements. Recent reports estimate the rates 1-9% based on subjective reporting [Fehlauer 2003][Højris 2000], 10-19% based on clinical examination [Fehlauer 2003][Goffman 2004] 20-48% [Rönkä 2004] [Senofsky 1991] and 30-70% based on skin thickness measurement [Rönkä 2004].
Lower limb lymphedema rates are likewise a strong function of the extent of the surgery and radiation used for treatment of reproductive and pelvic cancers, as well as lower limb melanomas. Whereas there are many different methods commonly used to evaluate upper limb swelling, there are very few methods reported to measure lower limb swelling. Lower limb lymphedema is reported in medical records only when it is severe enough that compression is not adequate, or causes disablement. Reported lower limb lymphedema ranges from zero [Coblenz 2002] to 60-80% [Balzer 1993][James 1982][Papachristou 1977] with many reports between these extremes.
Lymphedema of the genitals has been reported as 2-5% [Gaarenstroom 2003][Nelson 2004] and 18% (combined with lower limb) [Lieskovsky 1980]. Genital lymphedema among users of pneumatic pumps on the lower limb has been reported at 43% [Boris 1998].
Prevalence of primary lymphedema has been estimated as 1.15/100,000 persons under 20 years [Smeltzer 1985]
2. Time Course of Lymphedema (Bar Ad 2009)
In a study cohort of 1,713 consecutive Stage I or II breast cancer patients who underwent breast conservation therapy, including axillary staging followed by radiation, arm lymphedema was documented in 266 (16%) of the patients. One hundred nine patients, 6% of the overall group and 40% of the patients with arm lymphedema, presented with mild arm lymphedema, defined as a difference of 2 cm or less between the measured circumferences of the affected and unaffected arms. Among the 109 patients with mild arm lymphedema at the time of arm lymphedema diagnosis, the rate of freedom from progression to more severe lymphedema was 79% at 1 year, 66% at 3 years, and 52% at 5 years. The patients who were morbidly obese, had positive axillary lymph nodes, or received supraclavicular irradiation at the time of breast cancer treatment were at higher risk of progression from mild arm lymphedema to more severe edema. Mild arm lymphedema, generally considered to be a minor complication after breast conservation treatment for breast cancer, was associated with a risk of progression to a more severe grade of arm lymphedema in a substantial fraction of patients.
3. Cellulitis-Lymphedema Cycle (Damstra 2008)
Infection of the skin and lymphatic system (cellulitis/lymphangitis) is a major cause of lymphedema. It is also a major result of lymphedema. (Stoberl & Partsch 1987). There is evidence that there is suppression of immune competence in a lymphedematous limb (Mallon 1997). Some 10-15% of lymphedema patients experience infections each year (Swenson et. al. 2002, Kasseroller 1998). Research described by Dr. Kitamura at the 2010 meeting of the International Lymphoedema Framework in Brighton, Eng on the incidence of cellulitis in Japan among her breast cancer patients showed that 135/656 (20.6%) breast cancer survivors developed lymphedema, and of these 135 lymphedema patients 72 (53.3%) experienced recurrent cellulitis. The Kitamura figure of 11% falls within the earlier figures of Swenson and Kasseroller. Treatment of lymphedema has been shown to decrease the frequency of infections (Földi 1996, Boris 1997, Ko 1998).
In a 2008 study Damstra concluded: Erysipelas (cellulitis) is often presumed to be purely infectious in origin, with a high rate of recurrence and a risk of persistent swelling due to secondary lymphoedema. In this study, we show that patients presenting with a first episode of erysipelas often have signs of pre-existing lymphatic impairment in the other, clinically non-affected, leg. This means that sub-clinical lymphatic dysfunction of both legs may be an important predisposing factor. Therefore, we recommend that treatment of erysipelas should focus not only on the infection but also on the lymphological aspects, and long-standing treatment for lymphoedema is essential in order to prevent recurrence of erysipelas and aggravation of the pre-existing lymphatic impairment. A similar conclusion is described by Berdette in 2008 "The Investigators concluded that these data suggested that lymphedema was a predisposing factor in the cellulitis and was not caused by the infection. In another study the lymphatic drainage of 30 patients with recurrent cellulitis was studied via lymphoscintigraphy. Seventy-seven percent (23 out of 30) were found to have significant lymphatic abnormalities correlating well with the aforementioned data that show the major role of lymphedema in recurrent disease."
4. Case Study (Weiss 2007)
A number of separate approaches have been taken to arrive at a credible estimate of the potential savings to be achieved. One approach was to postulate two lymphedema treatment scenarios for a woman diagnosed with and treated for breast cancer. The first scenario postulates that she receives early and continued treatment of her lymphedema according to the recommended guidelines. The second scenario postulates that she receives no treatment for her lymphedema, but does receive medical treatment for her recurrent lymphedema-related infections. Data to support both scenarios are derived from statistics taken from recent scientific journals. The cost of lymphedema treatment over 40-year Breast Cancer Survivor's survival lifetime was $95,250 while the cost of medical treatment when the lymphedema was not treated was $340,000 which amounts to a saving of $244,750 over the 40 year lifetime of the illustrative patient (Cost Ratio = 3.57 no LE treatment / LE treatment).
5. Burden of Lymphedema (Shih 2009)
A recent published study estimated the economic burden of breast cancer–related lymphedema (BCRL) among working-age women, the incidence of lymphedema, and associated risk factors. Claims data were used to study an incident cohort of breast cancer patients for the 2 years after the initiation of cancer treatment. Medical costs and rate of infections likely associated with lymphedema were compared between a woman with BCRL and a matched control. Approximately 10% of the 1,877 patients had claims indicating treatment of lymphedema. The matched cohort analysis demonstrated that the BCRL group had significantly higher medical costs ($14,877 to $23,167) and was twice as likely to have lymphangitis or cellulitis (OR= 2.02, P= .009). Outpatient care, especially mental health services, diagnostic imaging, and visits with moderate or high complexity, accounted for the majority of the difference.
6. Reducing the Burden with Early Intervention with Compression Garments (Stout 2008)
In this prospective study, the authors demonstrated the effectiveness of a surveillance program that included preoperative limb volume measurement and interval postoperative follow-up to detect and treat sub-clinical LE. LE was identified in 43 of 196 (21.9%) women who participated in a prospective BC morbidity trial. Limb volume was measured preoperatively and at 3- month intervals after surgery. If an increase >3% in upper limb (UL) volume developed compared with the preoperative volume, then a diagnosis of LE was made, and a compression garment intervention was prescribed for 4 weeks. Upon reduction of LE, garment wear was continued only during strenuous activity, with symptoms of heaviness, or with visible swelling. Women returned to the 3-month interval surveillance pathway. Statistical analysis was a repeated-measures analysis of variance by time and limb (P < 0.001) comparing the LE cohort with an age-matched control group. The time to onset of LE averaged 6.9 months postoperatively. The mean (±standard deviation) affected limb volume increase was 83 mL (±119 mL; 6.5% ±9.9%) at LE onset (P = 0.005) compared with baseline. After the intervention, a statistically significant mean 48 mL (±103 mL; 4.1% ±8.8%) volume decrease was realized (P < 0.0001). The mean duration of the intervention was 4.4 weeks (±2.9 weeks). Volume reduction was maintained at an average follow-up of 4.8 months (±4.1 months) after the intervention.