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Social media, including Facebook groups, can help connect patients with rare cancers like granulosa cell tumors to researchers, allowing them to learn more about disease management.
Patients with granulosa cell tumors, a rare type of ovarian cancer, may help both other patients and researchers through social media by sharing their experiences with treatment, according to the results of a new study.
Of note, granulosa cell tumors account for 2% to 7% of malignant ovarian cancers, according to the study published in the journal Cancer. Although there are recommendations on how to treat granulosa cell tumors, evidence is lacking in this space from clinical trials, and thus, optimal treatment plans are not clear.
“The results suggest that when conditions are rare and it is hard to build up a picture of care using information about treatment delivered in one hospital or even across a state, using naturally forming patient support groups that we find on social media may provide one way to gather information about how a condition is being managed,” Victoria M. White, professor of psychology (psycho-oncology) at Deakin University in Burwood, Victoria, Australia, said in an interview with CURE®.
Researchers collected data from 743 members of the closed, multinational Facebook group Granulosa Cell Tumor-Survivor Sisters. The study stands as one of the largest surveys of granulosa cell tumor treatment, according to the researchers.
Collecting online data between 2014 and 2019, study participants completed a 43-item survey touching on symptoms, diagnosis, treatment, recurrence and follow-up experiences.
Participating members of the Facebook group were on average 4.4 years post-diagnosis. At diagnosis, 67% had stage 1 disease, while 8% had stage 3 to 4. Fifty-two participants had juvenile granulosa cell tumors.
Among the adults with granulosa cell tumors in this study, 48% had laparoscopic surgery, with 49% reporting tumor encapsulation (confined to a specific area and surrounded by a thin layer of tissue).
Nineteen percent of adults had chemotherapy, most commonly to treat stages 2 to 3 granulosa cell tumors. In addition, the use of a chemotherapy regimen consisting of bleomycin, etoposide and cisplatin, which can be used for the treatment of ovarian tumors, was less common as the survey progressed (47% if the patient was diagnosed before 2015, 21% if diagnosed afterwards), the survey found.
These reported treatment histories, according to the study, match what researchers have previously learned in a clinical setting. White said that this is important for researchers who study a rare disease such as granulosa cell tumors.
“When large numbers of people with the same rare condition develop social media groups, they can provide a way to start to explore what treatment people have had, how follow-up is being managed and experiences associated with living with these rare conditions,” White said.
However, White also noted that researchers need to be mindful of a few factors, such as who is likely to be an online group member and biases that might be present.
The majority of respondents were younger than 50 at the time of diagnosis, in contrast with treatment center databases – where the average age at diagnosis is approximately 50, according to the study. Regarding a disease such as cancer, which tends to become more common as people age, White said this may mean those researchers pulling data from social media “miss out on developing an understanding of how older people are treated.”
There are other factors, White explained, such as the fact that social media group members may be more anxious and uncertain about their condition, and researchers’ reliance on participants’ recollection of details regarding their experience with disease and treatment.
“People who join the groups are alive,” White said. “This means that people with more advanced disease or with poor prognosis may be less likely to join social media groups.”
Safeguards for data accuracy can include comparison of information collected via social media to that gathered through population-based studies and developing close working relationships with the users managing the social media group in question.
“The consumers involved in our study had a deep understanding of women’s treatment experiences and this assisted in the interpretation of responses and patterns found in the data set,” said White. “Our consumers helped us to understand the issues people have, and how we could understand some responses seen in the dataset.”
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