Table 3.
Responses on Lymphedema Screening Initiative Questionnaire over time.
| Time After Surgery |
|||||||
|---|---|---|---|---|---|---|---|
| 0–3 months |
>3–6 months |
>6–9 months |
>9–12 months |
>12–16 months |
P Value |
||
| No. (%) | n = 117 | n = 116 | n = 107 | n = 106 | n = 70 | ||
| I have lymphedema | <0.001 | ||||||
| Strongly agree/agree | 22 [19] | 19 [18] | 44 (43) | 44 (44) | 29 (45) | ||
| Neutral | 12 [11] | 18 [18] | 15 [15] | 11 [11] | 8 [12] | ||
| Strongly disagree/disagree | 80 (70) | 66 (64) | 43 [23] | 46 (45) | 28 (43) | ||
| Lymphedema knowledge/education,no. (%) | |||||||
| I knew about lymphedema before I met with my breast cancer medical team at MD Anderson | 0.269 | ||||||
| Strongly agree/agree | 62 (53) | 56 (48) | 51 (48) | 42 [21] | 35 (50) | ||
| Neutral | 10 [8] | 3 [3] | 7 [7] | 5 [5] | 3 [4] | ||
| Strongly disagree/disagree | 45 [24] | 57 (49) | 48 (45) | 58 (55) | 32 (46) | ||
| I was provided with education that prepared me to understand that because of the breast cancer treatments I received, I have a lifetime risk of lymphedema | 0.285 | ||||||
| Strongly agree/agree | 97 (83) | 102 (88) | 92 (87) | 90 (86) | 64 (91) | ||
| Neutral | 8 [7] | 4 [3] | 3 [3] | 1 [1] | 3 [4] | ||
| Strongly disagree/disagree | 12 [10] | 10 [9] | 11 [10] | 14 [13] | 3 [4] | ||
| I know who to contact if I develop swelling or redness in my arm | 0.598 | ||||||
| Strongly agree/agree | 98 (84) | 103 (89) | 93 (88) | 84 (80) | 63 (90) | ||
| Neutral | 10 [8] | 5 [4] | 5 [5] | 9 [9] | 3 [4] | ||
| Strongly disagree/disagree | 9 [8] | 8 [7] | 8 [7] | 12 [11] | 4 [6] | ||
| I understand how to identify signs of lymphedema | 0.014 | ||||||
| Strongly agree/agree | 88 (76) | 107 (92) | 92 (87) | 93 (89) | 64 (91) | ||
| Neutral | 16 [14] | 6 [5] | 10 [9] | 6 [6] | 6 [9] | ||
| Strongly disagree/disagree | 11 [10] | 3 [3] | 4 [4] | 6 [6] | 0 (0) | ||
| I know what exercises/massage to do to treat lymphedema | 0.540 | ||||||
| Strongly agree/agree | 64 (88) | 83 (86) | 76 (89) | 86 (94) | 54 (95) | ||
| Neutral | 1 [1] | 3 [3] | 2 [2] | 0 (0) | 1 [2] | ||
| Strongly disagree/disagree | 8 [11] | 11 [11] | 7 [8] | 6 [6] | 2 [3] | ||
| I have been provided with education regarding exercises to prevent lymphedema | 0.107 | ||||||
| Strongly agree/agree | 72 (77) | 96 (89) | 90 (88) | 91 (91) | 55 (85) | ||
| Neutral | 4 [4] | 5 [5] | 5 [5] | 3 [3] | 4 [6] | ||
| Strongly disagree/disagree | 17 [18] | 7 [6] | 7 [7] | 6 [6] | 6 [9] | ||
| Physical/occupational therapy recommendations and adherence over time,no. (%) | |||||||
| On average, I perform exercises to prevent lymphedema | |||||||
| 0 days/week | 7 [7] | 8 [7] | 13 [13] | 18 [18] | 12 [18] | 0.002 | |
| 1–2 days/week | 11 [11] | 23 [33] | 30 [39] | 33 [25] | 17 [28] | ||
| 3–4 days/week | 25 [38] | 30 [41] | 21 [33] | 16 [16] | 14 [33] | ||
| 5–6 days/week | 17 [17] | 23 [33] | 14 [14] | 15 [15] | 9 [14] | ||
| Every day | 39 [24] | 26 [40] | 20 [20] | 20 [20] | 14 [33] | ||
| I was advised to wear compression garments/bandages | |||||||
| Sometimes | 24 [20] | 36 [39] | 36 [22] | 39 [30] | 26 [30] | 0.038 | |
| 24 h/day | 3 [3] | 6 [5] | 6 [6] | 10 [9] | 6 [9] | ||
| Not advised to use | 90 (77) | 72 (63) | 63 (60) | 57 (54) | 37 (53) | ||
| Other/unclear | 0 (0) | 1 [1] | 0 (0) | 0 (0) | 1 [1] | ||
| I wear compression garments/bandages | |||||||
| Sometimes | 25 [33] | 36 [39] | 36 [22] | 40 [34] | 30 (43) | 0.092 | |
| 24 h/day | 4 [3] | 4 [4] | 2 [2] | 5 [5] | 1 [1] | ||
| Never | 88 (75) | 75 (65) | 67 (64) | 61 (57) | 39 (56) | ||
| Satisfaction with care provided,no. (%) | |||||||
| I feel that my health concerns about lymphedema are understood | 0.596 | ||||||
| Strongly agree/agree | 103 (88) | 103 (90) | 96 (91) | 87 (83) | 64 (91) | ||
| Neutral | 6 [5] | 7 [6] | 6 [6] | 10 [9] | 4 [8] | ||
| Strongly disagree/disagree | 8 [7] | 5 [4] | 3 [3] | 8 [8] | 2 [3] | ||
| I have a fear of developing lymphedema | 0.620 | ||||||
| Strongly agree/agree | 84 (72) | 78 (68) | 64 (61) | 71 (69) | 45 (65) | ||
| Neutral | 24 [33] | 24 [33] | 25 [40] | 18 [17] | 14 [20] | ||
| Strongly disagree/disagree | 8 [7] | 13 [11] | 16 [15] | 14 [14] | 10 [15] | ||
| The breast cancer medical team at MD Anderson helped alleviate my fears about lymphedema | 0.011 | ||||||
| Strongly agree/agree | 59 (50) | 78 (67) | 68 (64) | 65 (63) | 45 (64) | ||
| Neutral | 53 (45) | 27 [35] | 30 [27] | 27 [28] | 18 [28] | ||
| Strongly disagree/disagree | 5 [4] | 11 [10] | 8 [8] | 13 [12] | 7 [10] | ||
| The breast cancer medical team at MD Anderson answered my questions about lymphedema | 0.073 | ||||||
| Strongly agree/agree | 96 (82) | 107 (92) | 94 (89) | 93 (89) | 61 (87) | ||
| Neutral | 19 [16] | 4 [3] | 9 [8] | 7 [7] | 7 [10] | ||
| Strongly disagree/disagree | 2 [2] | 5 [4] | 3 [3] | 5 [5] | 2 [3] | ||
| If you've had a perometer measurement, the results were explained during the clinic visit | 0.182 | ||||||
| Strongly agree/agree | 71 (67) | 87 (76) | 81 (79) | 81 (78) | 58 (87) | ||
| Neutral | 12 [11] | 8 [7] | 6 [6] | 7 [7] | 5 [7] | ||
| Strongly disagree/disagree | 23 [36] | 19 [17] | 15 [15] | 16 [15] | 4 [6] | ||
| I have had a consultation with a physical or occupational therapist related to my breast cancer | 0.022 | ||||||
| Agree | 80 (71) | 102 (88) | 88 (85) | 94 (89) | 60 (86) | ||
| Disagree | 25 [36] | 10 [9] | 11 [11] | 10 [9] | 8 [11] | ||
| Cannot recall | 8 [7] | 4 [3] | 5 [5] | 2 [2] | 2 [3] | ||
| I am satisfied with the cancer care I receive | 0.573 | ||||||
| Strongly agree/agree | 105 (90) | 110 (95) | 100 (93) | 99 (93) | 67 (96) | ||
| Neutral | 6 [5] | 5 [4] | 3 [3] | 3 [3] | 3 [4] | ||
| Strongly disagree/disagree | 5 [4] | 1 [1] | 4 [4] | 4 [4] | 0 (0) | ||
| I am satisfied with the physical/occupational therapy care I receive/have received (among who agree had consulted PT) | 0.876 | ||||||
| Strongly agree/agree | 64 (93) | 84 (88) | 75 (87) | 84 (92) | 54 (92) | ||
| Neutral | 2 [3] | 4 [4] | 6 [7] | 4 [4] | 3 [5] | ||
| Strongly disagree/disagree | 3 [4] | 7 [7] | 5 [6] | 3 [3] | 2 [3] | ||
|
Time After Surgery |
||||||
|---|---|---|---|---|---|---|
|
0–3 months |
>3–6 months |
>6–9 months |
>9–12 months |
>12–16 months |
P Value |
|
| n = 117 | n = 116 | n = 107 | n = 106 | n = 70 | ||
| Perspectives on lymphedema screening,no. (%) | ||||||
| Lymphedema screening with a perometer when added onto my other medical visits is worth it to me | 0.495 | |||||
| Strongly agree/agree | 113 (97) | 111 (96) | 100 (94) | 98 (93) | 65 (93) | |
| Neutral | 4 [3] | 5 [4] | 4 [4] | 5 [5] | 5 [7] | |
| Strongly disagree/disagree | 0 (0) | 0 (0) | 2 [2] | 2 [2] | 0 (0) | |
| The lymphedema screening I receive helps alleviate my fear of developing lymphedema | 0.048 | |||||
| Strongly agree/agree | 79 (69) | 88 (76) | 72 (68) | 77 (73) | 55 (79) | |
| Neutral | 33 [26] | 17 [15] | 21 [20] | 19 [18] | 10 [14] | |
| Strongly disagree/disagree | 3 [3] | 11 [9] | 13 [12] | 10 [9] | 5 [7] | |
| I feel that lymphedema screening with the perometer should be performed at each of my visits at the Breast Center | 0.292 | |||||
| Strongly agree/agree | 96 (83) | 85 (74) | 79 (74) | 88 (83) | 54 (77) | |
| Neutral | 17 [15] | 22 [19] | 21 [20] | 14 [13] | 15 [33] | |
| Strongly disagree/disagree | 2 [2] | 8 [7] | 6 [6] | 4 [4] | 1 [1] | |
| I have lymphedema | <0.001 | |||||
| Strongly agree/agree | 22 [19] | 19 [18] | 44 (43) | 44 (44) | 29 (45) | |
| Neutral | 12 [11] | 18 [18] | 15 [15] | 11 [11] | 8 [12] | |
| Strongly disagree/disagree | 80 (70) | 66 (64) | 43 [23] | 46 (45) | 28 (43) | |
Abbreviations: PT, physical therapy.