Introduction
Methods
Study population
Questionnaire
Data collection
Statistical analysis
Results
Characteristics | Survivors | Controls | |
---|---|---|---|
N = 285 (52.8%) | N = 255 (47.2%) | P value* | |
n (%) | n (%) | ||
Age at study (years) | |||
< 24 | 59 (21.5) | 55 (22.0) | |
25–30 | 124 (44.8) | 108 (42.7) | |
> 31 | 93 (33.7) | 89 (35.2) | 0.900* |
Male | 138 (48.4) | 106 (41.6) | |
Female | 147 (51.6) | 149 (58.4) | 0.111* |
Relationship status | |||
Married/co-habit | 152 (54.9) | 148 (59.2) | |
In relationship | 44 (15.9) | 36 (14.4) | |
Single | 81 (29.2) | 66 (26.4) | 0.606* |
Sexual orientation | |||
Heterosexual | 268 (97.1) | 237 (95.2) | |
Homosexual | 1 (0.4) | 2 (0.8) | |
Bisexual | 1 (0.4) | 7 (2.8) | |
Other | 1 (0.4) | 1 (0.4) | |
Do not know | 5 (1.8) | 2 (0.8) | 0.096** |
Form of housing | |||
Parents | 28 (10.1) | 22 (8.8) | |
Independent living | 248 (89.5) | 227 (90.8) | |
Other | 1 (0.4) | 1 (0.4) | 0.876* |
Living environment | |||
Rural area | 51 (18.4) | 38 (15.3) | |
Small town | 173 (62.5) | 162 (65.1) | |
Larger city | 53 (19.1) | 47 (18.9) | 0.371* |
Education | |||
Elementary school | 11 (4.0) | 7 (2.8) | |
High school/college | 154 (55.8) | 116 (46.0) | |
University/college | 111 (40.2) | 129 (51.2) | 0.039* |
Age at diagnosis (years) | |||
15–18 | 39 (13.7) | ||
19–24 | 119 (41.8) | ||
25–30 | 116 (40.7) | ||
Time from diagnosis to survey | |||
Median months (range) | 49 (9–69) | ||
Primary diagnosis (self-reported) | |||
Leukemia | 17 (6.0) | ||
Lymphoma | 39 (14.0) | ||
Testicular cancer | 52 (18.6) | ||
Brain tumor | 40 (14.3) | ||
Breast cancer | 10 (3.6) | ||
Bone/soft tissue tumor | 10 (3.6) | ||
Gynecological cancer | 22 (7.9) | ||
Skin cancer | 35 (12.5) | ||
Thyroid cancer | 24 (8.6) | ||
Misc./other | 30 (6.0) | ||
Treatment (self-reported) | |||
Chemotherapy | 122 | ||
Radiation abdomen/pelvic | 24 | ||
Other radiation | 67 | ||
Surgery | 221 | ||
Stem cell transplantation | 19 | ||
Social activities | |||
Seeing friends past month | |||
No | 12 (4.4) | 11 (4.5) | |
Yes, but less than once a week | 78 (28.4) | 79 (32.1) | |
Yes, once a week | 99 (36.0) | 98 (38.4) | |
Yes, at least three times a week | 55 (20.0) | 36 (14.1) | |
Yes, every day | 31 (11.3) | 22 (8.6) | 0.11*** |
Activity such as cinema, concert, or sport, past month | |||
No | 58 (21.1) | 49 (19.9) | |
Yes, but less than once a week | 145 (52.7) | 99 (40.2) | |
Yes, once a week | 64 (23.3) | 70 (28.5) | |
Yes, at least three times a week | 9 (3.1) | 23 (9.3) | |
Yes, every day | 1 (0.3) | 5 (2.0) | 0.54*** |
Been out at a restaurant, pub, or party past month | |||
No | 56 (16.7) | 57 (23.2) | |
Yes, but less than once a week | 84 (30.5) | 126 (51.2) | |
Yes, once a week | 95 (34.5) | 54 (22.0) | |
Yes, at least three times a week | 29 (10.5) | 9 (3.7) | |
Yes, every day | 21 (7.6) | 0 (0) | 0.51*** |
Men | Women | |||||
---|---|---|---|---|---|---|
Cancer survivors | Controls | P value* | Cancer survivors | Controls | P value* | |
N = 112 | N = 87 | N = 125 | N = 133 | |||
n % | n % | n % | n % | |||
Satisfaction with sexual function | ||||||
No | 18 (16.1) | 9 (10.4) | 35 (28.0) | 14 (14.3) | ||
Yes, a little | 27 (24.1) | 11 (12.6) | 34 (27.2) | 34 (25.6) | ||
Yes, moderate | 44 (39.3) | 40 (46.0) | 45 (36.0) | 58 (43.6) | ||
Yes, a lot | 23 (20.5) | 27 (31.0) | 0.01 | 11 (8.8) | 22 (16.5) | < 0.01 |
Importance of sex (partner or no partner) | ||||||
No | 29 (21.2) | 15 (14.3) | 37 (25.2) | 27 (18.2) | ||
Yes, a little | 31 (22.6) | 27 (25.7) | 39 (26.5) | 44 (29.7) | ||
Yes, moderate | 43 (31.4) | 39 (37.1) | 43 (29.3) | 42 (28.4) | ||
Yes, a lot | 34 (24.8) | 24 (22.9) | 0.94 | 28 (19.0) | 35 (23.6) | 0.23 |
Confidence in partner as a reliable friend | ||||||
No | 2 (1.4) | 3 (4.2) | 10 (18.4) | 4 (3.3) | ||
Yes, a little | 9 (12.6) | 10 (13.9) | 15 (12.6) | 9 (7.4) | ||
Yes, moderate | 30 (21.7) | 12 (16.7) | 33 (27.7) | 32 (26.2) | ||
Yes, a lot | 55 (39.9) | 47 (65.3) | 0.59 | 61 (51.3) | 47 (65.3) | 0.03 |
Female AYA cancer survivors
Cancer survivors | Controls | ||
---|---|---|---|
n (%) | n (%) | P value* | |
Women | N = 133 | N = 147 | |
Genital chafing | |||
No | 92 (78.6) | 89 (60.5) | |
Yes, sometimes | 15 (12.8) | 42 (28.6) | |
Yes, every month | 8 (6.9) | 11 (7.5) | |
Yes, every week | 2 (1.7) | 5 (3.6) | 0.84 |
Superficial dyspareunia | |||
No | 67 (52.3) | 78 (60.0) | |
Yes, a little | 42 (32.8) | 42 (32.3) | |
Yes, moderate | 14 (11.0) | 7 (5.4) | |
Yes, a lot | 5 (3.9) | 3 (2.3) | 0.31 |
Deep dyspareunia | |||
No | 90 (69.2) | 99 (76.2) | |
Yes, a little | 31 (23.9) | 26 (20.0) | |
Yes, moderate | 6 (4.6) | 4 (3.1) | |
Yes, a lot | 3 (2.3) | 1 (0.7) | 0.31 |
Enough lubrication | |||
No | 7 (5.3) | 5 (3.7) | |
Yes, a little | 26 (19.5) | 23 (16.5) | |
Yes, moderate | 59 (44.4) | 68 (48.9) | |
Yes, a lot | 41 (30.8) | 43 (30.9) | 0.28 |
Orgasm | |||
Not at all | 22 (15.0) | 18 (12.2) | |
Less than once a month | 27 (18.4) | 16 (10.8) | |
Once or twice a month | 37 (25.2) | 29 (25.2) | |
Three to four times a month | 30 (20.4) | 42 (28.4) | |
Once or twice a week | 25 (17.0) | 25 (16.9) | |
More than three times a week | 6 (4.1) | 18 (12.2) | < 0.01 |
Desire for sex | |||
No | 15 (10.2) | 11 (7.4) | |
Yes, a little | 53 (36.1) | 56 (37.8) | |
Yes, moderate | 53 (36.1) | 51 (34.5) | |
Yes, a lot | 26 (17.7) | 30 (20.3) | 0.59 |
Men | N = 131 | N = 101 | |
Difficulty getting erection | |||
No | 3 (2.4) | 0 (0) | |
Yes, sometimes | 5 (3.9) | 3 (3.1) | |
Yes, less than half of the times | 3 (2.4) | 1 (1.0) | |
Yes, more than half of the times | 23 (18.1) | 17 (17.5) | |
Yes, always | 93 (73.2) | 76 (78.4) | 0.31 |
Ejaculation during orgasm | |||
No | 2 (1.5) | 0 (0) | |
Yes, sometimes | 2 (1.5) | 2 (2.0) | |
Yes, less than half of the times | 1 (0.8) | 0 (0) | |
Yes, more than half of the times | 5 (11.5) | 5 (5.0) | |
Yes, always | 111 (84.7) | 94 (93.0) | 0.051 |
Premature ejaculation | |||
No | 63 (58.8) | 43 (50.6) | |
Yes, sometimes | 29 (27.1) | 27 (31.8) | |
Yes, less than half of the times | 5 (4.7) | 8 (9.4) | |
Yes, more than half of the times | 5 (4.7) | 5 (5.9) | |
Yes, always | 5 (4.7) | 2 (2.3) | 0.29 |
Orgasm | |||
Not at all | 5 (3.6) | 5 (4.8) | |
Less than once a month | 9 (6.6) | 4 (3.8) | |
Once or twice a month | 15 (10.9) | 9 (8.6) | |
Three to four times a month | 19 (13.9) | 14 (13.3) | |
Once or twice a week | 39 (28.5) | 26 (24.8) | |
More than three times a week | 50 (36.5) | 47 (44.8) | 0.23 |
Desire for sex | |||
No | 14 (10.2) | 4 (3.8) | |
Yes, a little | 32 (23.4) | 15 (14.3) | |
Yes, moderate | 61 (44.5) | 51 (43.6) | |
Yes, a lot | 30 (21.9) | 35 (33.3) | 0.04 |
Male AYA cancer survivors
Possible confounder | No. (%) | RR (95% CI) OR (95% CI) | P value* | Adjusted ** OR (95% CI) |
---|---|---|---|---|
Female AYA cancer survivors | ||||
Genital chafing | ||||
Yes | 11/26 (42) | 1.0 (Ref.) | ||
No | 24/99 (24) | 1.7 (1.0–3.1) 2.3 (0.9–5.7) | 0.07 | |
Superficial dyspareunia | ||||
Yes | 19/58 (33) | 1.0 | ||
No | 12/62 (19) | 1.7 (0.9–3.2) 2.0 (0.9–4.7) | 0.10 | |
Deep dyspareunia | ||||
Yes | 14/37 (38) | 1.0 | ||
No | 19/85 (22) | 1.7 (1.0–3.0) 2.1 (0.9–4.9) | 0.08 | |
Enough lubrication | ||||
No | 4/6 (67) | 1.0 | ||
Yes | 17/62 (27) | 2.4 (1.2–4.9) 5.3 (0.9–31.6) | 0.07 | |
Desire for sex | ||||
No | 9/12 (75) | 1.0 | ||
Yes | 26/113 (23) |
3.3 (2.0–5.2)
10.0 (2.5–39.8)
|
0.001
| 2.6 (0.5–13.0) |
Frequency of orgasm | ||||
< 1 a month | 16/33 (48) | 1.0 | ||
≥ 1 a month | 19/92 (21) |
2.3 (1.4–4.0)
3.6 (1.5–8.5)
|
0.003
|
2.8 (1.0–8.1)
|
Relationship status | ||||
Single | 6/20 (30) | 1.0 | ||
Partner | 29/102 (28) | 1.1 (0.5–2.2) 1.2 1.1 (0.4–3.1) | 0.89 | |
Have biological children | ||||
No | 19/69 (28) | 1.0 | ||
Yes | 16/53 (30) | 0.9 (0.5–1.6) 0.9 (0.4–1.9) | 0.75 | |
Infertility | ||||
Yes | 10/24 (42) | 1.0 | ||
No | 11/52 (21) | 2.0 (1.0–4.0) 2.7 (0.9–7.6) | 0.07 | |
Feeling attractive | ||||
No | 12/21 (57) | 1.0 | ||
Yes | 23/104 (22) |
2.6 (1.5–4.3)
4.7 (1.8–12.5)
|
0.002
| 2.8 (0.9–8.9) |
Scars—less attractive | ||||
Yes | 18/55 (33) | 1.0 | ||
No | 12/58 (21) | 1.6 (0.8–3.0) 1.9 (0.8–4.4) | 0.15 | |
Negative thoughts about the body | ||||
Yes | 34/118 (29) | 1.0 | ||
No | 1/7 (14) | 2.0 (0.3–12.7) 2.4 (0.3–20.9) | 0.42 | |
Anxiety | ||||
3–7 | 30/101 (30) | 1.0 | ||
1–2 | 5/24 (21) | 1.3 (0.6–3.3) 1.6 (0.5–4.7) | 0.39 | |
Depression | ||||
Yes | 23/49 (47) | 1.0 | ||
No | 12/76 (16) |
3.0 (1.6–5.4)
4.7 (2.0–10.9)
|
0.0003
|
3.5 (1.4–8.9)
|
Fatigue (tired daytime) | ||||
< 1/2 | 28/83 (34) | 1.0 | ||
≥ 1/2 | 6/38 (16) | 2.1 (1.0–4.7) 2.7 (1.0–7.3) | 0.05 | |
Educational level | ||||
Lower | 24/64 (38) | 1.0 | ||
Higher | 11/58 (19) |
2.0 (1.1–3.7)
2.6 (1.1–5.9)
|
0.03
| 1.6 (0.6–4.2) |
Age | ||||
31+ | 2/36 (6) | 1.0 | ||
25–30 | 10/54 (19) | 1.2 (0.6–2.2) 1.3 (0.5–3.1) | 0.56 | |
19–24 | 5/20 (25) | 0.8 (0.4–2.0) 0.8 (0.3–2.5) | 0.70 | |
Male AYA cancer survivors | ||||
Erection | ||||
Yes | 6/7 (86) | 1.0 | ||
No | 8/100 (8) |
10.7 (5.2–22.2)
69.0 (7.4–646.1)
|
0.0002
|
18.7 (1.7–206.1)
|
Ejaculation with orgasm | ||||
Yes | 1/4 (25) | 1.0 | ||
No | 17/106 (16) | 1.6 (0.3–9.0) 1.7 (0.2–17.8) | 0.64 | |
Premature ejaculation | ||||
Yes | 5/15 (33) | 1.0 | ||
No | 9/88 (10) |
3.3 (1.7–8.4)
4.4 (1.2–15.7)
|
0.02
| 2.2 (0.4–13.0) |
Desire for sex | ||||
No | 1/10 (10) | 1.0 | ||
Yes | 17/102 (17) | 0.6 (0.1–4.0) 0.6 (0.1–4.7) | 0.59 | |
Frequency of orgasm | ||||
< 1a month | 1/5 (20) | 1.0 | ||
≥ 1a month | 17/107 (16) | 1.3 (0.2–7.7) 1.3 (0.1–12.6) | 0.81 | |
Relationship status | ||||
Single | 6/29 (21) | 1.0 | ||
Partner |
11/82 (13)
|
1.5 (0.6–3.8)
1.7 (0.6–5.1)
|
0.35
| |
Have biological children | ||||
No | 13/74 (18) | 1.0 | ||
Yes | 4/37 (11) | 1.6 (0.6–4.6) 1.8 (0.5–5.8) | 0.36 | |
Infertility | ||||
Yes | 2/10 (20) | 1.0 | ||
No | 6/46 (13) | 1.5 (0.4–6.5) 1.7 (0.3–9.8) | 0.57 | |
Feeling attractive | ||||
No | 5/9 (56) | 1.0 | ||
Yes | 13/103 (13) |
4.4 (2.0–9.5)
8.7 (2.1–36.4)
|
0.003
| 4.7 (0.8–28.7) |
Scars—less attractive | ||||
Yes | 9/40 (23) | 1.0 | ||
No | 8/65 (12) | 1.8 (0.8–4.4) 2.1 (0.7–5.9) | 0.17 | |
Negative thoughts about the body | ||||
Yes | 16/82 (20) | 1.0 | ||
No | 2/30 (7) | 2.9 (0.7–12.0) 3.4 (0.7–15.8) | 0.12 | |
Anxiety | ||||
3–7 | 13/69 (19) | 1.0 | ||
1–2 | 5/43 (12) | 1.6 (0.6–4.2) 1.8 (0.6–5.4) | 0.32 | |
Depression | ||||
Yes | 12/38 (32) | 1.0 | ||
No | 6/74 (8) |
3.9 (1.6–9.6)
5.2 (1.8–15.4)
|
0.003
| 4.6 (0.9–22.7) |
Fatigue (tired daytime) | ||||
< 1/2 | 10/50 (20) | 1.0 | ||
≥ 1/2 | 7/60 (12) | 1.7 (0.7–4.2) 1.9 (0.7–5.4) | 0.23 | |
Educational level | ||||
Lower | 14/75 (19) | 1.0 | ||
Higher | 3/35 (9) | 2.2 (0.7–7.1) 2.4 (0.7–9.1) | 0.18 | |
Age | ||||
31+ | 2/36 (6) | 1.0 | ||
25–30 | 10/54 (19) | 3.3 (0.8–14.3) 3.9 (0.8–18.8) | 0.09 | |
19–24 | 5/20 (25) | 4.5 (1.0–21.1) 5.7 (1.0–32.6) | 0.05 |