Feasibility of a self-help web-based intervention targeting young cancer patients with sexual problems and fertility distress

The majority of adolescents and young adults (AYAs) with cancer will experience a negative impact on their sexuality or fertility in the aftermath of their cancer treatment [1, 2]. The extent of the problems depends on the type of cancer and treatment and age at diagnosis, as well as time since diagnosis. Commonly reported sexual problems include lack of desire, orgasm and arousal difficulties, vaginal dryness (women), pain, and erection and ejaculatory dysfunction (men) [3]. Existing results indicate that up to 50% of young men [4] and women [5] treated for cancer experience a negative impact on their sexual life and intimacy. Among survivors of cancer at a young age, the overall probability of parenthood is reduced by 23–50% [6, 7]. In a study by Gorman et al. [8], 65% of female survivors reported moderate or high levels of distress related to concerns about their fertility potential, personal health, health risks of potential future children, and disclosure issues. Importantly, reproductive concerns were associated with consistent long-term depressive symptoms. Furthermore, it is described that AYAs with cancer in contact with health care professionals receive insufficient information and support related to sexuality and reproduction [9, 10]. In a population-based study of survivors who had received cancer treatment at age 18–45, 48% of the women and 20% of the men reported not having received any information about treatment-related risks of infertility [11].

In health care, web-based interventions have the potential to increase participants’ sense of autonomy (control over one’s life), perceived efficacy (competence), and relatedness (“I am not alone with these problems”) [12]. Web-based interventions are increasingly being used to provide education and support to mitigate psychosocial problems in AYAs with cancer [13]. However, such interventions in the areas of sexual and reproductive health for young cancer patients are scarce. One educational program that provided information about risk of treatment-induced infertility and having children after breast cancer has been positively evaluated [14]. Additionally, Schover et al. [15] reported promising results from an efficacy trial that tested an intervention for cancer-related sexual dysfunction. However, none of the participants in the trial were younger than the age of 35, and young women were more likely to drop out of the study. This result underscores the need to develop an intervention that takes the preferences and needs of young persons with cancer into account, which was the rationale for building a comprehensive self-help program that included several key components of successful web-based interventions.

Overall, the study results indicate that the Fex-Can intervention was feasible for AYAs with cancer, regarding demand, acceptability, preliminary efficacy, and functionality. Many participants in the sexuality and fertility programs expressed satisfaction with the intervention as a whole. The participants who went through more than four modules in the program—the committed users—often went through the whole program and used most of its features. The information, the mix of texts, videos, and exercises, the flexibility regarding how and when to use the program, and the opportunity to interact with others in the same situation were features that were generally appreciated. Most participants were also satisfied with the language and the tone of the texts, as well as the general organization of the intervention. We originally developed the intervention in close collaboration with other AYAs with cancer, which might have contributed to making the intervention feasible for this patient group [16].

Generally, the participants’ opinions did not differ between the sexuality and fertility programs. However, use and appreciation of the exercises diverged between the programs. Motivation to use the exercises might have been higher in the sexuality program due to expectations of improvement in sexual function. The exercises in the fertility program aimed at managing a situation of threatened or lost fertility and may have seemed more demanding and less attractive. As most of the participants were still generally positive about the inclusion of the exercises in the program, they will be kept unchanged for the future RCT.

Despite some technical problems and low activity, the discussion forum was appreciated by the participants who used it, and the feature will be kept for the future RCT. However, the design will be revised to improve the forum’s visibility on the site, and notifications for new postings will be added.

Regarding the ask the expert forum, most participants used this function to some extent, and many posed their own questions. However, the relatively high amount of work behind this feature for the research group and external experts did not match the outcome for the participants. The nature of the questions asked also indicated that the participants already had satisfactory contact with their physicians in charge and posed questions to get a second opinion. Therefore, this feature will not be retained for the larger RCT.

The present study has strengths, as well as limitations. In this feasibility study of a comprehensive program, 15 of the 23 participants remained active throughout the whole intervention (2 months). The study had a limited representation of men (4 out of 23), but in other aspects, the participants appeared well matched to the future target group, representing different ages, diagnoses, and treatments, and all expressing sexual problems or fertility-related distress. Due to the small number of participants in each program, scores for sexual function and fertility distress were reported only at the group level to ensure confidentiality. Although sexuality and fertility are considered important issues among AYAs with cancer [9, 10], it was not easy to recruit participants for the study. This might be due to the sensitive nature of the topic and the recruitment strategy, as those who were willing to participate had to actively contact the researchers on their own initiative. The low number of men in our study is in line with previous reports of low representation of men in survey studies concerning health issues [24] and men’s reluctance to seek help for both medical and psychological health problems [25, 26]. However, while the demand for the intervention appeared to be lower among male patients, there were no indications that the intervention was less feasible for men. As for the results, a general methodological consideration is that participants may have had difficulty expressing negative opinions in the interviews. Participants who remained throughout the intervention and participated in the exit interviews shared positive and negative experiences of using the program, and the opinions expressed in the interviews were in line with the results from the post-intervention questionnaires. However, it is possible that some negative experiences were not expressed and that those participants who did not complete the program or participate in the evaluations had different views.

In conclusion, the present study indicated that this web-based intervention was feasible for adolescents and young adults with cancer. Considering the fact that men constituted a minority of the study participants and committed users, our conclusions about the feasibility of the intervention for male patients are limited. Based on these findings, the effectiveness of the intervention to decrease sexual problems and fertility distress will be tested in a population-based RCT for AYAs with cancer. To the extent that the intervention proves to be effective, this program could be implemented in the regular care of AYAs with cancer in Sweden as the web-based format is cost-effective irrespective of geographic distance. Another clinical implication could be to give health care providers in cancer care access to parts of the program to increase the providers’ competence in these issues.