Sexual function in adolescent and young adult cancer survivors—a population-based study

Six hundred and sixty AYA cancer survivors were identified from four of the register holders belonging to the population-based Swedish National Cancer Registry, namely the Regional Cancer Centres for the north, west, southeast, and central regions of Sweden. The former cancer patients had been treated for cancer when aged between 15 and 29 during 1 January 2010 to 31 December 2011. In this study, we decided on the inclusion of 15–29 year olds in the AYA age group, as was current in Europe at the start of this study [14]. During the study, they were alive and at least 1 year post treatment. All malignant diagnoses were included based on ICD version 10, neoplasms. Participants were eligible for the study if they (1) understood the Swedish language, (2) were not undergoing treatment for cancer, (3) had a listed phone number, and (4) were functionally/cognitively able to answer the questionnaire. Controls were randomly identified from the Swedish National Population Registry and matched by age, gender, and place of residence. The Regional Cancer Centers delivered the names and addresses as one cohort, without information on whether they were patients or controls. The Regional Ethical Review Board in Gothenburg, Sweden, granted ethical approval for this study with the reference number 691-13 and additional reference number 944-14.

A study-specific questionnaire was constructed, based on a 24-month qualitative phase, clinical experience, and a method established by the research group at the Division of Clinical Cancer Epidemiology [15]. The method has been used in more than 20 data collections focusing on cancer and survivorship [16‐21]. The study-specific questionnaire was validated in several steps including comments from experts, researchers, clinicians, and patients to test the comprehension of the questions and to see if the main specific areas were covered. Ten former cancer patients tested the revised questionnaire by face-to-face validation, i.e., answering the questions in the presence of the interviewer and discussing unclear questions. A revised draft was constructed, and a pilot study was carried out with 28 cancer survivors, more than 5 years post cancer treatment. The overall participation rate in the pilot study was 71%, and the pilot study resulted in minor improvements to the questionnaire.

The primary questions in the web questionnaire asked interviewees whether they had a cancer diagnosis and to state their gender. The results from these two questions directed each respondent to the questionnaire relevant to her or him. The questionnaire included 98 questions on demographics, quality of life, well-being, psychosocial health, social life, education, work, leisure, fertility, body image, and sexuality. This paper focuses on variables of the self-perceived sexual function and the remaining results have been or will be analyzed elsewhere. Questions included in this study were as follows, for women: superficial dyspareunia: “Have you experience pain in the mucous membranes or in the opening of vagina during sexual intercourse or other sexual activities, the last six months?” and deep dyspareunia: “Have you had pain of the depth of vagina and inside the pelvis during sexual intercourse or in other sexual activites, the last six months?” “Have you experienced sufficient lubrication during the past six months?” with multiple-choice answers: “No,” “Yes, a little,” “Yes, moderate,” or “Yes, a lot.” In addition, for men: “Have you experienced difficulties getting an erection during the past month?” “Have you experienced ejaculation during orgasm during the past month?” “Have you experienced premature ejaculation during the past month?” with multiple-choice answers: “No,” “Yes, a little,” “Yes, moderate,” or “Yes, a lot.” Followed by questions for men and women: “Have you experienced orgasm during the past month?” with multiple-choice answers: “Not at all,” “Less than once a month,” “One to two times a month,” “Three to four times a month,” “One to two times a week,” or “More than three times a week.” “Have you had desire for sex during the past month?” with multiple-choice answers: “No,” “Yes, a little,” “Yes, moderate,” or “Yes, a lot.” Variables used in the analysis were age; relationship status (married/co-habitation, in a relationship, single); feeling attractive during the past 6 months (yes very much, moderately, a little, or no); having negative perception of your body (yes very much, moderately, a little, or no); feeling tired during daytime (never, occasionally, 50% of the time, more than 50% of the time, every day); depression (no, yes or I do not know); anxiety (a scale from 1 = never to 7 = always); having children (yes or no); being infertile (yes, no, do not know); educational level (university, primary and secondary school); and diagnosis group (leukemia, lymphoma, testicular cancer, breast cancer, bone cancer, CNS tumors, gynecological cancer, skin cancer, thyroid cancer and misc./other). All the response alternatives have been validated in previous studies conducted by the research group [20, 22‐24]. We modified questions regarding participation in this study from similar questions in previous research [25‐27].

An introductory letter was sent to former patients and controls with information on the study and a statement that participation would be voluntary and could be ceased without explanation or repercussions at any time. One to 2 weeks later, an interviewer phoned each prospective informant.

The informants gave their informed consent by giving the interviewer their e-mail addresses. In an e-mail, each participant then received a personal username and password for the web questionnaire. After 2 weeks, the participants received a thank-you e-mail to show appreciation for their participation and to serve as a reminder, for those who needed one. A few weeks later, the interviewer phoned those who had not completed the questionnaire. The answers to the web-based questionnaire were automatically sent to a database, and each questionnaire was given a number for identification to maintain anonymity. Participants received information regarding the research group and were given contact information (an around-the-clock telephone number and an e-mail address) in case they needed to talk to someone or had a question.

Statistical analyses were undertaken using SPSS version 23 and SAS 9.4 for Windows.

Female AYA cancer survivors had a statically significant lower frequency of orgasm during sexual activity than the controls (P < 0.01) (Table 3). Of female AYA cancer survivors, 15% reported having superficial dyspareunia and 25% little or no lubrication (Table 3). However, there were no statistically significant differences between female AYA cancer survivors and the controls regarding these physical problems (Table 3). Additionally, female AYA cancer survivors who had a partner felt less confidence than the controls in their partner as a reliable friend (Table 2). There was no difference in the desire for sex between female AYA cancer survivors and the controls (Table 3). In a primary univariate regression analysis of possible confounders, the following factors were associated with low satisfaction with sexual function in female AYA cancer survivors: low desire for sex, lower frequency of orgasms, feeling unattractive, depression, and lower education. In a secondary analysis where we adjusted all significant confounders in the primary analysis in a multivariable logistic regression model, depression (OR 3.5; 95% CI 1.4–8.9) was the only factor predicting feelings of low satisfaction with sexual function (Table 4).

Male AYA cancer survivors reported a statistically significant lower sexual desire than the controls (P = 0.04) (Table 3). Of male AYA cancer survivors, approximately 10% reported having problems in getting an erection, 10% reported frequently having premature ejaculation, 15% reported not always ejaculating during orgasm, and 10% reported having orgasm less than once a month (Table 3). However, there were no statistically significant differences between male AYA cancer survivors and the controls regarding physical problems (Table 3). In a primary univariate regression analysis of possible confounders, the following factors were associated with low satisfaction with sexual function in male AYA cancer survivors: erectile problems, premature ejaculation, feeling unattractive, depression, and younger ages. In a secondary analysis where we adjusted all significant confounders from the primary analysis in a multivariable logistic regression model, erectile problems (OR 20.7; 95% CI 2.8–152.7) constituted the only factor predicting low feeling of satisfaction with sexual function (Table 4).