Addressing Unmet Needs of Female Cancer Survivors Seeking Sexual Health Information Through Social Media

doi:10.21203/rs.3.rs-4870893/v1

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Addressing Unmet Needs of Female Cancer Survivors Seeking Sexual Health Information Through Social Media

https://doi.org/10.21203/rs.3.rs-4870893/v1

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Purpose:

Sexual dysfunction is under-addressed throughout cancer care continua, and survivors often seek information outside of patient-provider relationships. This study aims to describe the demographics of cancer survivors seeking sexual health information through social media while describing preferred methods of information acquisition and the content patients seek online to fill knowledge gaps.

Methods:

An anonymous survey was made available online through a sexual health after cancer program’s social media page. Multiple-choice questions assessed age, cancer diagnosis, sexual health concerns, and resources used for health-related information. Short answer responses allowed for descriptions of unmet educational needs. Descriptive analyses of multiple-choice questions, and qualitative analysis of open response themes were performed.

Results:

Of 302 survey participants, 301 were cancer survivors. Participants ages 18 to 65+ had a variety of cancer types. Most reported that painful sex (36%) or low desire (34%) was their most bothersome problem. The majority (81%) reported interest in seeking sexual health information online. 161 (54%) participants provided free-text responses that were analyzed qualitatively. They expressed a particular need for information about low desire (25%) and discomfort during sex (15%).

Conclusions:

Female cancer survivors with diverse disease sites and ages seek sexual health information through social media to fill knowledge gaps that are often not met through direct provider communication.

Implications for Cancer Survivors:

Cancer patients, young and old, seek sexual health information from diagnosis through survivorship. These results inform tailored educational initiatives for survivors to receive accessible, evidence-based information in the media that they prefer, while highlighting the need to audit existing sources to minimize misinformation exposure.

sexual health

cancer

sexual dysfunction

survivorship

social media

The growing population of 18.1 million cancer survivors in the United States is projected to rise to 24.4 million by 2035 [1, 2]. More than half of cancer survivors are cisgender women with breast (4.1 million, 22% of cases) and gynecologic cancers (1.4 million, 8% of cases) being the most common [1]. Given the complex decision-making required at the time of diagnosis, there is often insufficient time to address the secondary effects of treatment, including those impacting quality of life and sexual health [3–7].

More than half of cancer survivors cope with severe and long-term sexual side effects after treatment, and the existing literature reports that younger age is associated with worse sexual dysfunction [7]. These symptoms range from vaginal dryness and painful sex to low desire and adverse psychosocial and body image changes [8–10]. If gynecologic effects of cancer treatment are discussed, these conversations often revolve around fertility preservation [11, 12].

Oncologists have reported a variety of barriers to sexual health conversations with patients, including the belief that other topics are of higher priority, lack of time, lack of comfort in addressing sexual health concerns, and the idea that advanced patient age obviates the need for this discussion [13, 14]. Survey studies report that patients desire more information outside of their treatment plan discussions with their providers. If not provided by their clinician, they seek strategies for managing sexual health symptoms, changes in partner intimacy, and body image concerns through extra-clinical avenues [12–14].

Social media allows patients to access information at low-to-no cost and provides a platform through which they can interact with others with common experiences [15]. However, as demonstrated by the use and effect of social media during the COVID-19 pandemic, providers must anticipate that some information patients are accessing to fill these educational gaps may contain misinformation or disinformation [16].

The aim of the present study was to describe the population of cancer patients experiencing sexual dysfunction that use social media to fill their educational knowledge gaps. The secondary aim was to describe the content that patients are seeking online and the trends in social media platforms they are using.

Between August 2019 and July 2021, a non-probabilistic sample of patients was recruited through the social media page of an NCI-designated sexual health after cancer program to complete an investigator-generated, ten-item online survey (Online Resource 1). The original survey was housed on the Survey Monkey platform and later transferred to a WordPress website for improved accessibility. Participation was anonymous and voluntary, and the survey included multiple choice, English-language questions assessing age, cancer diagnosis and treatment characteristics, presence and type of sexual health concerns, and utilization type and preferences of online resources for health-related information. The final question allowed participants to write short-answer responses to describe their specific educational needs and elaborate on the nature of their cancer history, treatment, and sexual function.

Descriptive statistics were conducted in SPSS Version 28 to characterize this population and their specific concerns. In addition, qualitative content analysis of the open responses was assessed and described through theme identification. Data visualizations were created in Tableau and the Word Cloud was generated through Voyant Tools.

A total of 302 participants completed online surveys: 127 on Survey Monkey and 175 on a WordPress survey. After excluding a single patient without a prior history of cancer, 301 participants were included in the analysis. A depiction of the study schema is included in the Supplementary Information (Online Resource 2). Participant characteristics and their sexual health and social media experiences are shown in Table 1. Most respondents were 44 or younger (66%), and most had breast cancer (89%). Participants with leukemia/lymphoma, cervical, uterine, ovarian, colon, and other bowel, melanoma, and brain malignancies also responded. Most reported either painful sex (36%) or low desire (34%) as their most bothersome problem, although vaginal dryness (20%), body image issues (7%), and problems with orgasm (4%) were also reported (Fig. 1). Most reported that they were very or somewhat likely to seek sexual health information online (81%) and that Instagram was their preferred platform (80%). Participants across all age groups found value in their ability to access sexual health information online: 80% felt this resource was very or extremely valuable (Fig. 2).

Table 1

Respondent Characteristics
Variable	n (%)
Current Age Under 18 18–24 25–34 35–44 45–54 55–64 65+	0 (0.0) 2 (0.7) 70 (23) 128 (42) 78 (26) 23 (8) 1 (0.3)
Age at Diagnosis 18–24 25–34 34–44 45–54 55–64 65+	10 (3.0) 90 (30) 133 (44) 55 (18) 14 (5) 0 (0.0)
Cancer Type Breast Leukemia/Lymphoma Ovarian Other Brain Cervical Multiple types Stomach/Other Bowel Colon Uterine Melanoma/Skin	269 (89) 9 (3) 7 (2) 4 (1) 3 (1) 2 (0.7) 2 (0.7) 2 (0.7) 1 (0.3) 1 (0.3) 1 (0.3)
Reports Sexual Health Problems Yes No	297 (98) 5 (2)
Most Bothersome Problem Painful sex Low desire Vaginal dryness Body image concerns Problems with orgasm	108 (356) 102 (34) 59 (20) 21 (7) 11 (4)
How often do you use social media? Multiple times per day Once a day Once a week Once a month	266 (88) 28 (9) 6 (2) 1 (0.3)
Preferred Platform Instagram Facebook Twitter Pinterest	242 (80) 57 (19) 1 (0.3) 1 (0.3)
Value of online community Extremely valuable Very valuable Somewhat valuable Not so valuable	141 (47) 104 (35) 50 (17) 5 (2)
Likelihood to Seek Sexual Health Advice on Social Media Very likely Somewhat likely Neither likely nor unlikely Somewhat unlikely Very unlikely	164 (55) 114 (38) 16 (5) 5 (2) 2 (0.7)

One hundred and sixty-one participants completed the free-text question with more than one word in the text entry field. These responses were included in the qualitative analyses. Thirty-five percent of participants requested specific product suggestions, therapy recommendations, and feedback on therapies suggested by other survivors or elsewhere online. Participants described wanting more readily available information about addressing low libido (25%), dyspareunia (15%), changing body image (11%), and vaginal dryness (11%) from their providers or on social media. Notably, participants described that the sexual side effects of their cancer treatment were unexpected or not explained to them by their providers (14%), and some reported that they had no identifiable provider near their location who had expertise in addressing these concerns (7%). Other participants expressed a desire to talk with their providers about their changing relationship dynamics and concerns about their partners and dating life after cancer treatment (12%). A word cloud was generated to visualize the free response entries, showing the 125 most common phrases included in participants’ entries (Fig. 3).

Our study sought to describe cancer survivors’ common and unmet needs through their utilization of social media to fill educational shortcomings. Our results support previous studies’ findings and confirm patients’ lack of satisfaction with the education received through their oncology care team. Specifically, they are still seeking improved communication regarding their cancer diagnosis and treatment options, treatment side effects, and specifically sexual health-related side effects and mitigation strategies. Our results reinforce the understanding that patients are aware of their unmet needs and resort to looking outside the clinical setting to meet these needs. Our study further solidifies that social media plays an essential role as a source of information and confirms its specific value to patients.

We uncovered several previously unreported findings concerning the age and cancer type of patients seeking sexual health information through social media. Specifically, we found that the utilization of social media for sexual health concerns is not limited to younger patients. Approximately one-quarter of respondents were younger than 35, nearly half were 35–44, but more than a quarter were > 45, highlighting that both pre- and postmenopausal patients found value in online resources and community. Additionally, while sexual side effects are often discussed in the setting of breast or genitourinary cancers, a minority of responses came from patients with hematologic malignancies, melanomas, and even brain cancers. These findings highlight that every oncologist must be comfortable discussing this topic.

Our findings indicate survivors' desire to seek evidence-based information about treatment side effects and sexual function-related changes following cancer diagnosis and treatment. Considering the misinformation and disinformation pandemics exacerbated alongside the spread of COVID-19, cancer patients should have access to evidence-based, validated information during in-person, open conversations with their providers and in an online, accessible format. This highlights the need for more provider-created content and tools for cancer survivors online, especially for survivors who are unable to or do not feel comfortable having these potentially sensitive discussions in person. Many participants’ responses emphasized the value in or hearing about and desire to learn more about fellow patient’s experiences, and explained feeling less alone in their survivorship knowing that they were not alone in their symptomatology and challenges. Furthermore, these educational resources must be available to patients throughout their cancer treatment continuum: from the time of diagnosis, during treatment option discussions, and years following the completion of their regimens. This is aligned with the findings by Huynh, et al. in that the discussion of sexual adverse effects of treatment should occur "early and often.”

Strengths of our study include the sampling of a diverse and contemporary audience. This includes older patients that are typically more difficult to reach with virtual platforms. Additionally, we were able to reach individuals with cancer types that may not receive standard counseling regarding sexual health after cancer conversation (i.e., brain cancer). Likewise, there are some limitations to consider. The survey was administered anonymously through a social media page, which inherently presents self-selection and self-reporting biases. The sample predominantly consisted of patients with breast cancer diagnoses, which may lead to an overrepresentation of the concerns experienced by this group. Additionally, to respect respondents' privacy, questions regarding race and ethnicity, sex and gender, educational and socioeconomic background, and treatment history questions were not asked.

Finally, our study strengthened the notion that patients deserve a provider with expertise on these topics available to them. Nonetheless, since patients are willing to attend virtual spaces, these challenges may be mitigated with telemedicine or virtual support spaces. There are promising interventions with hybrid self-view/counseling models that have demonstrated symptomatic improvement in patient questionnaires [17, 18].

The present study highlights the importance of social media in the healthcare setting and its influence in shaping the physician-patient relationship, allowing for an empowered patient perspective and equal communication between the patient and provider [19]. Nonetheless, the use of social media can also negatively affect the physician-patient relationship: it can lead to increased switching of doctors and suboptimal interactions when patients cite misinformed social media content or have changed expectations to their visits [19].

After cancer treatment, patients with breast and genitourinary malignancies and other cancer types still have unmet needs with regards to their sexual health and wellbeing. Patients are aware of this need and are willing to turn to virtual spaces and social media to meet this need. Providers can meet this need by developing evidence-based educational opportunities and materials for patients that are available online and can take advantage of emerging telemedicine technologies.

Funding

The authors declare that no funds, grants, or other support were received for the preparation of this manuscript.

The authors have no relevant financial or non-financial interests to disclose.

Author Contributions

All authors contributed to the preparation of this manuscript. Material preparation and data collection were performed by KR. Analyses were performed by RB, DG, and KR. The manuscript drafts were written by RB, DG, and KR and subsequent versions were commented on by all authors.

Data Availability

The data collected and analyzed during the current study are available from the corresponding team on reasonable request.

Ethics Approval

The Human Subject Research Office at the University of Miami has confirmed that no ethical approval is required.

Disclosures: Author KER has received speaker honoraria from Pacira Pharmaceuticals, consulting fees from Roche Diagnostic Solutions, and has served in an advisory board role for Novartis and Merck within the last 36 months. None of these disclosures are related to the content of this manuscript.

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No competing interests reported.

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Addressing Unmet Needs of Female Cancer Survivors Seeking Sexual Health Information Through Social Media

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