Table 1 summarizes the age, gender identity, race, ethnicity, as well as cancer diagnosis and staging information of the overall sample, active treatment, and survivorship patients. Due to the differences in questionnaires completed by participants in active treatment (AYA-POST) and survivorship (AYA-SPOST), results are summarized below by treatment status (Table 2).
Table 1
Summary of Demographic Data and Clinical Characteristics
| Total Sample (N = 127) | Active Treatment (n = 72) | Survivorship (n = 55) |
| M (SD) | Range | M (SD) | Range | M (SD) | Range |
Age | 31.96 (5.33) | 19–39 | 32.33 (5.36) | 19–39 | 31.47 (5.32) | 20–39 |
Distress Screener | 4.18 (2.58) | 0–10 | 4.36 (2.38) | 0–10 | 3.95 (2.82) | 0–10 |
Gender Identity | n | % | n | % | n | % |
Female | 85 | 66.9 | 51 | 70.8 | 34 | 61.8 |
Male | 40 | 31.5 | 19 | 36.4 | 21 | 38.2 |
Prefer not to Answer | 2 | 1.6 | 2 | 2.8 | 0 | 0 |
Race | n | % | n | % | n | % |
White | 99 | 78.0 | 58 | 80.6 | 41 | 74.5 |
Black | 12 | 9.4 | 7 | 9.7 | 5 | 9.1 |
More than One Race | 6 | 4.7 | 4 | 5.6 | 2 | 3.6 |
Asian | 5 | 3.9 | 1 | 1.4 | 4 | 7.3 |
Prefer not to Answer | 3 | 2.4 | 1 | 1.4 | 2 | 3.6 |
American Indian/Alaska Native | 1 | 0.8 | 1 | 1.4 | 0 | 0 |
Native Hawaiian/Other Pacific Islander | 1 | 0.8 | 0 | 0 | 1 | 1.8 |
Ethnicity | n | % | n | % | n | % |
Non Hispanic/Latino | 93 | 73.2 | 52 | 72.2 | 41 | 74.5 |
Hispanic/Latino | 29 | 22.8 | 17 | 23.6 | 12 | 21.8 |
Prefer not to Answer | 3 | 2.4 | 2 | 2.8 | 1 | 1.8 |
Unknown/not reported | 2 | 1.6 | 1 | 1.4 | 1 | 1.8 |
Cancer Diagnosis | n | % | n | % | n | % |
Breast | 39 | 30.7 | 23 | 31.9 | 16 | 29.1 |
Other | 24 | 18.9 | 18 | 25.0 | 6 | 10.9 |
Lymphoma | 15 | 11.8 | 7 | 9.7 | 8 | 14.5 |
Testicular | 12 | 9.4 | 3 | 4.2 | 9 | 16.4 |
Leukemia | 11 | 8.7 | 4 | 5.6 | 7 | 12.7 |
Brain/CNS Tumor | 6 | 4.7 | 5 | 6.9 | 1 | 1.8 |
Sarcoma | 5 | 3.9 | 3 | 4.2 | 2 | 3.6 |
Cervical | 4 | 3.1 | 2 | 2.8 | 2 | 3.6 |
Melanoma | 4 | 3.1 | 2 | 2.8 | 2 | 3.6 |
Colorectal | 4 | 3.1 | 3 | 4.2 | 1 | 1.8 |
Prefer not to Answer | 2 | 1.6 | 2 | 2.8 | 0 | 0 |
Thyroid | 1 | 0.8 | 0 | 0 | 1 | 1.8 |
Staging | n | % | n | % | n | % |
Unknown/Unstaged | 38 | 29.9 | 19 | 26.4 | 19 | 34.5 |
IV | 29 | 22.8 | 22 | 30.6 | 7 | 12.7 |
III | 25 | 19.7 | 11 | 15.3 | 14 | 25.5 |
II | 19 | 15.0 | 11 | 15.3 | 8 | 14.5 |
I | 15 | 11.8 | 9 | 12.5 | 6 | 10.9 |
Prefer not to Answer | 1 | 0.8 | 0 | 0 | 1 | 1.8 |
Table 2
Summary of Sex Concerns by Treatment Status
Concerns | Active Treatment (n = 23) | Survivorship (n = 12) |
| Yes | % | Yes | % |
Loss of libido | 16 | 69.6 | - | - |
Sexual concerns | 12 | 52.2 | 11 | 91.7 |
Pain with sex | 5 | 21.7 | - | - |
Sex/unprotected sex | - | - | 3 | 25.0 |
Note. Proportion is based on number of active treatment vs. survivorship participants who endorsed at least one sexual concern. “-” indicates data that was not collected due to differences between questionnaires for active treatment (AYA-POST) and survivorship (AYA-SPOST). |
A little over one quarter (27.6%, n = 35) of all participants (N = 127, Mage = 31.96, SD = 5.33) endorsed having at least one sexual health concern (i.e., sexual concern, loss of libido, pain with sex, and unprotected sex). Specifically, 31.9% (n = 23) of those in active treatment and 21.8% (n = 12) of those in survivorship had at least one sexual concern. It should be noted that participants in active treatment had three questions on sexual concerns and survivors only had two, which may contribute to the prevalence rates differences of these concerns across treatment status.
Figures 1–4 summarize the top concerns among participants with and without at least one sexual concern, separated by treatment status. Independent samples t-tests revealed that participants in active treatment who had at least one sexual concern had significantly higher distress (M = 5.22, SD = 1.93) than those without sexual concerns (M = 3.96, SD = 2.48; t(70) = 2.14, p = 0.018). In contrast, distress of participants in survivorship with at least one sexual concern (M = 4.75, SD = 2.42) did not differ significantly from survivors without sexual concerns (M = 3.72, SD = 2.91; t(53) = 1.12, p = 0.134).
More specifically, comparisons of shared top concerns among active treatment participants who reported at least one sexual concern vs no sexual concerns were conducted with chi-square tests of independence. Results revealed significant relations between sexual concerns and general appearance (χ2 (1, N = 72) = 5.91, p = 0.015). In contrast, there were non-significant relations between sexual concerns and anxiety/fear (χ2 (1, N = 72) = 3.38, p = 0.066), and sexual concerns and sleep concerns (χ2 (1, N = 72) = 3.37, p = 0.054).
Among survivors, results showed significant relations between sexual concerns and long-term effects of treatment (χ2 (1, N = 55) = 6.67, p = 0.010). Relations between sexual concerns and recurrence of cancer (χ2 (1, N = 55) = 1.96, p = 0.161), sexual concerns and anxiety/fear (χ2 (1, N = 55) = 1.16, p = 0.281) were not significant.
Of the 127 participants (85 female, 40 male, 2 preferred not to answer), 24 (28.2%) females reported at least one sexual health concern, with 15 in active treatment and 9 in survivorship. 10 males (25.0%) endorsed at least one sexual health concern, with 7 in active treatment and 3 in survivorship. Breast cancer (n = 14), lymphoma (n = 4), stage II were the most common cancer types and stage among females who endorsed at least one sexual concern, whereas the testicular cancer (n = 3), lymphoma (n = 3), and stage II were the most common cancer types and stage among males who endorsed at least one sexual concern.