Financial cost of lymphedema borne by women with breast cancer

John Boyages, Ying Xu, Senia Kalfa, Louise Koelmeyer, Bonny Parkinson, Helen Mackie, Hector Viveros, Paul Gollan, Lucy Taksa. Psycho‐Oncology. 2017;26:849–855.

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Abstract

Financial cost of lymphedema borne by women with breast cancer

John Boyages, Ying Xu,  Senia Kalfa, Louise Koelmeyer, Bonny Parkinson, Helen Mackie, Hector Viveros, Paul Gollan, Lucy Taksa. Psycho‐Oncology. 2017;26:849–855.

Objective

Our study examines the financial cost of lymphedema following a diagnosis of breast cancer and addresses a significant knowledge gap regarding the additional impact of lymphedema on breast cancer survivors.

Methods

An online national survey was conducted with 361 women who had either breast cancer without lymphedema (BC) (group 1, n = 209) or breast cancer with lymphedema (BC+LE) (group 2, n = 152). Participant recruitment was supported by the Breast Cancer Network Australia and the Australasian Lymphology Association.

Results

Both breast cancer and lymphedema result in significant out‐of‐pocket financial costs borne by women. Of patients with BC+LE, 80% indicated that their breast cancer diagnosis had affected them financially compared with 67% in the BC group (P < .020). For patients with lymphedema, over half (56%) indicated that this specific additional diagnosis to their breast cancer affected them financially and that costs increased with lymphedema severity. The cost of compression garments formed a large proportion of these costs (40.1%). The average number of attendances to a therapist each year was 5.8 (range, 0‐45). Twenty‐five patients (16.4%) had an episode of cellulitis in the past year. The incidence of cellulitis was 7.7% in 91 patients with subclinical or mild lymphedema compared with 29.5% of 61 patients with more extensive lymphedema (P < .001). The average out‐of‐pocket financial cost of lymphedema care borne by women was A$977 per annum, ranging from A$207 for subclinical lymphedema to over A$1400 for moderate or severe lymphedema.

Conclusions

This study identifies an additional detrimental effect of lymphedema on women in terms of financial costs.

Main findings

  • The survey instrument addressed the issue of how to differentiate the impact of diagnosis of lymphoedema over and above a diagnosis of breast cancer. It had two parts, the first, looking at the impact of lymphoedema and the second breast cancer for all patients. This instrument is available from Macquarie University upon request Email: boyages@mq.edu.au
  • The average out‐of‐pocket financial cost of lymphedema care borne by women was A$977 per annum, ranging from A$207 for subclinical lymphedema to over A$1400 for moderate or severe lymphedema.
  • Taking cellulitis into consideration the National Hospital Cost Data Collection is the annual collection of public hospital cost data in Australia. In 2014, the average cost per admission for cellulitis was divided into less severe (80.6%) and more severe cases (19.4%), with an average cost per admission of A$4102 and A$9605, respectively. In this study this would have equated to a total cost of $98 751 for the 12 patient admissions (3 less severe and 9 more severe) and excludes 13 patients who were not admitted but had to pay for medical visits and antibiotics and had to take time off work.
  • Out‐of‐pocket costs cause some patients who are under financial stress to delay replacing their compression sleeves when they lose pressure and/or delay seeing a lymphoedema therapist
  • As lymphoedema becomes more advanced, episodes of cellulitis increase, which adds to costs to the patient and the health system.
  • There needs to be policy change as a lack of both appropriately trained and funded therapists and reimbursement for treatment is false economy in the long‐term.