Introduction
Methods
Sample
Ethical considerations and informed consent
Measures
Data collection
Data analysis
Results
N = 129 | BCRL* Yes n = 60 (46.51%) | BCRL* No n = 69 (54.49%) | p value | Interviewees N = 40 |
---|---|---|---|---|
Demographics | ||||
Age in years, M (SD) | 65 (8) | 62 (8) | 0.11 | 64 (8) |
Race | 0.32 | |||
White | 35 (57.4) | 41 (60.3) | 21 (52.5) | |
Black | 24 (39.3) | 26 (38.2) | 17 (42.5) | |
Other | 2 (3.3) | 0 (0.0) | 2 (5) | |
Education completed | 0.35 | |||
High school | 17 (27.9) | 13 (19.1) | 19 (47.5) | |
College | 26 (42.6) | 29 (42.7) | 12 (30) | |
Graduate school | 17 (27.9) | 26 (38.2) | 9 (22.5) | |
Income | 0.02 | |||
≤ $30,000 | 8 (13.1) | 11 (16.2) | 4 (10.5) | |
$30,001–$70,000 | 30 (49.2) | 18 (26.5) | 22 (57.8) | |
> $70,000 | 19 (31.2) | 35 (51.5) | 12 (31.6) | |
Total cash assets | 0.60 | |||
≤ $4,999 | 17 (27.9) | 16 (23.5) | 12 (35.1) | |
$5,000–$49,999 | 16 (26.2) | 13 (19.1) | 10 (27.0) | |
$50,000–$499,999 | 13 (21.3) | 19 (27.9) | 10 (27.0) | |
≥ 500,000 | 9 (14.8) | 13 (19.1) | 4 (10.8) | |
Retired | 22 (36.1) | 15 (22.1) | 10 (25.0) | |
Insurance type | 0.08 | |||
Public | 21 (34.4) | 19 (27.9) | 0.43 | 12 (30) |
Private | 49 (80.3) | 53 (77.9) | 0.74 | 33 (82.5) |
None | 1 (1.6) | 2 (2.9) | 0.62 | 0 |
Cancer diagnosis and treatment variables | ||||
Cancer stage at diagnosis | 0.09 | |||
Stage 0 | 9 (14.8) | 10 (14.7) | 10 (32.3) | |
Stage 1 | 11 (18.0) | 22 (32.4) | 9 (29.0) | |
Stage 2 | 11 (31.2) | 19 (16.2) | 7 (22.6) | |
Stage 3 | 9 (14.8) | 6 (8.8) | 5 (16.1) | |
Missing | 13 (21.3) | 19 (27.9) | 9 (22.5) | |
Years since cancer diagnosis (SD) | 13 (6) | 10 (3) | 0.002 | 12 (5) |
Number of adjuvant treatment modalities (SD) | 2 (1) | 2 (1) | 0.13 | |
Radiation | 51 (83.6) | 53 (77.9) | 0.42 | 33 (82.5) |
Chemotherapy | 51 (83.6) | 46 (67.7) | 0.05 | 30 (76.9) |
Hormonal therapy | 29 (47.5) | 34 (50) | 0.79 | 10 (25) |
Comorbidities | 1 (1) | 1 (1) | 0.46 | 2 (1) |
Inter-limb difference (%) | 9.3 (13.4) | − 0.8 (6.1) | < 0.001 | 7.7 (15.0) |
Average expenses | ||||
---|---|---|---|---|
Cost category | BCRL* Yes | BCRL* No | % difference | Cohen’s d, 95% confidence interval |
Number of health provider visits | 1.54 (1.9) | 1.50 (2.69) | 4% | − 0.01, (− 0.14, 0.11) |
Total direct costs | $355.0 ($1676.8) | $159.6 ($373.6) | 122% | − 0.16, (− 0.25, − 0.07) |
Office visit co-pays | $94.2 ($481.8) | $41.0 ($167.3) | 131% | − 0.15, (− 0.24, − 0.05) |
Alternative treatments | $16.5 ($84.7) | $10.7 ($45.7) | 54% | − 0.08, (− 0.21, 0.04) |
Labs and X-rays | $12.3 ($92.2) | $7.3 ($72.4) | 68% | − 0.06, (− 0.18, 0.06) |
Compression garments/bandaging | $350 ($459.3) | N/A | N/A | N/A |
Lotions | $20.7 ($23.1) | $28.8 ($30.0) | − 28% | 0.29, (0.01, 0.57) |
Gym memberships | $38.9 ($35.9) | $35.8 ($30.0) | 9% | − 0.08, (− 0.32, 0.15) |
Medications | $60.1 ($149.5) | $41.1 ($56.8) | 46% | − 0.17, (− 0.29, − 0.04) |
Emergency room (in-patient) costs | $18.7 ($37.2) | $15.0 ($47.4) | 25% | − 0.14, (− 1.41, 1.12) |
Out-patient hospital costs | $14.6 ($38.5) | $4.0 ($12.6) | 290% | − 0.48, (− 1.72, 0.76) |
Other out-of-pocket costs | $157.6 ($1456.6) | $59.1 ($288.0) | 167% | − 0.09, (− 0.18, − 0.01) |
Cost for hired help | $106.5 ($115.7) | $103.3 ($104.0) | 3% | − 0.03, (− 0.51, 0.45) |
Number of hours for hired help | 2.77 (13.3) | 3.10 (12.69) | − 13% | 0.06, (− 0.36, 0.48) |
Opportunity costs, work | $124.9 ($666.5) | $191.7 ($747.3) | − 35% | 0.10, (− 0.05, 0.25) |
Opportunity costs, home | $9.6 ($45.0) | $7.1 ($36.3) | 35% | − 0.06, (− 0.22, 0.11) |
Co-pays | Lotions | Medications | Other out-of-pocket costs | |||
---|---|---|---|---|---|---|
Model 1 N = 905 | Model 2 N = 722 | Model 1 N = 168 | Model 1 N = 456 | Model 1 N = 905 | Model 2 N = 722 | |
Lymphedema |
1.01
(1.00, 1.02)
| 1.00 (0.99, 1.01) | 0.77 (0.48, 1.21) | 1.01 (0.99, 1.02) |
1.01
(1.00, 1.02)
| 1.00 (0.99, 1.01) |
Income (ref = ≤ $30,000) | ||||||
$30,001–$70,000 |
1.01
(1.00, 1.04)
|
1.02
(1.01, 1.04)
| 1.67 (0.97, 2.87), | 1.00 (0.99, 1.01) | 1.00 (0.98, 1.02) | 0.99 (0.98, 1.01) |
> $70,000 | 1.01 (0.99, 1.03) | 1.00 (1.00, 1.00) |
2.05
(1.20, 3.50)
|
1.01
(1.00, 1.02)
| 1.01 (0.99, 1.03) | 1.00 (0.99, 1.02) |
Years since cancer diagnosis | 0.99 (0.99, 1.00) | 1.00 (1.00, 1.00) | ||||
Number of adjuvant treatments (ref = 4) | ||||||
1 | 0.99 (0.97, 1.03) | 1.04 (0.96 1.13) | ||||
2 | 1.00 (0.98, 1.03) | 1.05 (0.97, 1.14) | ||||
3 | 1.01 (0.99, 1.03) | 1.05 (0.97, 1.14) | ||||
Number of comorbidities | 1.00 (1.00, 1.01) | 1.00 (1.00, 1.00) | ||||
Cancer stage at diagnosis (ref = Stage 0) | ||||||
Stage 1 | 1.00 (0.99, 1.01) | 1.01 (0.98, 1.03) | ||||
Stage 2 | 1.01 (0.99, 1.01) | 1.01 (0.99, 1.03) | ||||
Stage 3 | 1.00 (0.98, 1.01) | 1.00 (0.97, 1.02) |
Qualitative findings
Cost category* | BCRL Yes | BCRL No | BCRL Yes Name, age, (insurance type) | BCRL No Name, age, (insurance type) | Themes |
---|---|---|---|---|---|
Office visit co-pays | $94.2 ($481.8) | $41.0 ($167.3) | Doris, 83 (public insurance): Well, no. The only thing, you paid a co-pay to your doctor.... And that, that wasn’t bad then...Because back then it was like $25.00. But now co-pay is $50.00. You know, so…In a matter of 10 to 15 years, things have really went up. | Cheryl, 52 (private insurance): Also, I just found that my co-pays, because the insurance I had, was rather expensive. They are, like, thirty dollars a month every time I went to the doctors, which was kind of hard. | For BCRL+, costs are co-pays that are ongoing due to the need for specialty treatments, while for BCRL−, co-pay costs are concentrated closer to time of breast cancer treatment |
Compression garments/bandaging | $349 ($459.3) | N/A | Maria, 73 (public and private insurance): My insurance did not cover the garment, and, you know, the sleeve, and the wrappings…that was, like, $300-some dollars just for the sleeve and the garment that I had to wear. And then I had to buy the bandages, the tape to go with the bandages, you know. | N/A | The need for compression garments, bandages, and sleeves contributes to higher overall costs for those with BCRL |
Medications | $60.1 ($149.5) | $41.1 ($56.8) | Anjanee, 60 (private insurance): Well I had to take my 401K money and like pay bills, buy medicine...‘cause when you are always worried about, “All right, I got my medicine this month. Let me not take it as prescribed but kind of not take it every day but every other day so that it’ll last me so when I get more money”.... Maria, 73 (public and private insurance): [The most challenging was] economically the cost of the medication that I received during the time of my diagnosis and treatment, the prescriptions. I did not do any therapy at that time, but when I developed the lymphedema, then I did treatment…I was taking Tamoxifen, I believe, at the time, and I took that for, like, three years, and I had to pay for that. | Carol, 69 (private insurance): I had to stop work. I lost income. So additional medication had to be purchased, so additional copays, additional doctors…my income was shortened, so I had to figure out other ways to make things happen. Diane, 73 (public insurance): …so I have been on continuous medications, and I’m dealing with Medicare telling me what I can and cannot take….I’ve actually stopped a couple [of medications] because I could not afford them, so... And then two years ago, I went into the donut hole. | For both BCRL+ and BCRL−, costs of ongoing medications compromise ability to take full medication regimens |
Other out-of-pocket costs | $157.6 ($1456.6) | $59.1 ($288.0) | Maria, 73 (public and private insurance): I have Medicare and … the premium for the secondary insurance is over $200 a month, what am I paying, over $2400 a year.... Emma, 65 (public insurance): …The costs of the organic foods and different supplements, and things like that, that everyone was recommending, that ran into some money. Alexandra, 66 (public insurance): I’ve been coming three times a week [for lymphedema therapy], so there’s a small amount I pay for parking… | Diane (public insurance), 73: My supplemental insurance, to help cover the doctors and stuff, is $227 dollars a month, and then your supplemental to cover your drugs is another 45 a month. And of course, Medicare’s not free. I know everybody acts like it is, but it’s not. That was-- the last time I looked, it was 166 bucks every three months. Eve, 52 (private insurance): Because everywhere, people tell me to call the [American Cancer Society]. Call this person. Call that person. Call here to get wigs. Call here to do that-- and it seems like every door that I tried to walk through was shut in my face…. “Oh, no, you do not qualify.” | Across BCRL+ and BCRL−, supplemental insurance is a common expense BCRL+ may have additional transportation costs for ongoing therapy visits or recommended supplements |