Use of social media to conduct a cross-sectional epidemiologic and quality of life survey of patients with neuroendocrine carcinoma of the cervix: A feasibility study☆
Introduction
Rare tumors of the female reproductive tract have traditionally posed a challenge for researchers because of the inherent difficulty of aggregating data from a small sample of patients spread over a wide geographic area. Most studies of rare tumors of the female reproductive tract conducted to date are single-institution experiences over many years. These studies, combined with expert opinion, form the basis for many of the standard-of-care management guidelines for such tumors.
Neuroendocrine carcinoma of the uterine cervix is a rare gynecologic tumor with histologic features that resemble those of neuroendocrine tumors from other primary sites, such as small cell carcinoma of the lung [1]. Neuroendocrine carcinoma of the cervix accounts for less than 1% of all cervical cancers, and fewer than 100 cases are diagnosed annually in the United States [2]. The majority of patients have advanced-stage disease at diagnosis, and even those diagnosed at an early stage have a higher risk for recurrence and disease progression than patients with other histologic types of cervical cancer [3]. Treatment strategies for neuroendocrine carcinoma of the cervix are extrapolated from management of more common cervical carcinomas and neuroendocrine cancers from other primary sites [1]. Radical hysterectomy and pelvic lymphadenectomy are usually performed for early-stage disease [4]. Postoperative adjuvant chemotherapy with platinum or combined etoposide/platinum regimens is reported to increase survival [3], [5]. Some studies suggest that primary concurrent chemoradiation is also an option for early-stage disease [6], [7]. Treatment of advanced disease is often palliative [8].
To our knowledge, there are no published reports regarding studies conducted in a cross-sectional fashion evaluating the presentation at the time of diagnosis, initial staging evaluation, treatment, or surveillance of women with neuroendocrine carcinoma of the cervix. There are a few published single-institution case series that have addressed some of these issues through retrospective reviews. Additionally, there are no published data about quality of life or patient reported outcomes (PROs) for this patient population.
The advent of social media has enabled many patients with rare tumors to connect in the public domain [9]. These connections often occur through online support groups or forums on popular social media websites such as Facebook [10]. These groups allow patients to exchange information, provide support to each other, and, often, solicit expert opinion from physician members of those social networks [11]. The online presence of these groups may present a new opportunity to perform research outside the traditional confines of single-institution databases. In an attempt to assess the feasibility of such an approach, we identified a Facebook group for patients with neuroendocrine cancer of the cervix and invited patient members of the group to complete an epidemiologic and quality of life survey.
Section snippets
Methods
After obtaining Institutional Review Board approval, we asked members of an established support group for women with neuroendocrine cancer of the cervix on the social networking site Facebook (present at https://www.facebook.com/groups/scccsisters/) to anonymously complete an online survey. Specifically, we posted a link to the survey in the support group's Facebook news feed, along with a brief description of the inclusion criteria and survey goals. Any woman who self-reported a history of
Results
Fifty-seven patient members of the support group participated in the study during the 30 days it was available online. The total number of patients in the support group was not evaluable because the group included family and supporters; hence, response rate was not calculated. Forty-six of the respondents (81%) completed the survey within the first 2 weeks it was posted.
The majority of respondents (79%) were women residing in 26 different states across the United States. (Table 1) The mean age at
Discussion
Researchers interested in rare tumors of the female reproductive tract face many obstacles. In the absence of an institutional database or a tumor registry, identification of sufficient numbers of patients and collection of sufficient data for studies of such tumors may span many years and prove impractical. Our work demonstrates that use of a social media platform may eliminate many of these obstacles and may allow a diverse patient sample to be recruited and surveyed in a short period of time.
Conflict of interest statement
The authors have no conflicts of interest to disclose.
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Research conducted with the assistance of the Patient-Reported Outcomes, Population, and Survey Research Shared Resource, Cancer Center Support Grant CA016672.