Use of Social Networking to Survey Women With Small and Large Cell Carcinomas of the Cervix
The entire study will be conducted electronically. A survey assessing presentation of
disease, treatment history and follow-up (appendix A) will be hosted on a secured online
server. In addition respondents will be asked to complete a battery of 40 questions
assessing anxiety regarding their diagnosis and fear of recurrence based on previously
published instruments (appendix B).
Patients will be asked to provide data on the presenting symptoms at the time of the
diagnosis, method of diagnosis, HPV detection, modalities used as initial treatment,
specialty of the physician administering the treatment, stage, follow up interval and
diagnostic studies, recurrence free interval and treatments offered/received at the time of
To assess anxiety and fear of recurrence we will be using questions from instruments
initially used in a breast cancer population:
The Concerns About Recurrence Scale (CARS): The CARS has two main parts. In the first part,
overall fear of recurrence is assessed with four questions addressing frequency, potential
for upset, consistency, and intensity of fears. Participants rate each of these items on a
1-to-6 scale. In the second part, the nature of women's fears about recurrence is assessed
with 26 items that follow the stem phrase: "I worry that a recurrence of cancer would"
Participants use a 5-pointscale, ranging from 0 (not at all), to 1 (a little), to 2
(moderately), to 3 (a lot), and to 4 (extremely), to indicate the extent to which they worry
about each item.
Lerman Cancer Worry Scale: This includes three items, one measuring the frequency of
worrying about "getting recurrence cancer someday," and two items measuring the impact of
worry on mood and performing daily activities. For cancer worry, subjects will rate their
current levels of worry about getting cancer recurrence someday on a 5-point scale with
points labeled not at all (1), rarely (2), sometimes (3), often (4), and almost all the time
(5). For impact of worry on mood and on functioning, respondents experiencing cancer worries
will rate the current impact of such worries on their moods and on their ability to perform
their daily activities using a 4-point scale with points labeled not at all (I),a little
(2), somewhat (3), and a lot (4).
The Survey will be offered to all patients who are members of the Facebook group found at
the uniform resource locator https://www.facebook.com/SmallCellCC through an online link. We
expect the survey to take participants 15-20 minutes to complete. Surveys with similar
anxiety measuring elements conducted by phone and on the internet have been reported with
Patients will be presented with an online informed consent prior to taking the survey. In
addition patients will be provided with an email address and a phone number to use if they
have any questions or wish to withdraw from the study. Upon reading the informed consent
patients will be able to proceed to the questionnaire hence signifying their informed
consent or back to Facebook indicating their refusal. No personal identifying data will be
collected. Prior to taking the survey they will be given a serial number to associate with
their answers in case they wish to withdraw in the future.
Observational Model: Cohort, Time Perspective: Prospective
Feasibility of Using Social Networking Groups to Survey Patients with Rare Cancers.
The entire study will be conducted electronically. A survey assessing presentation of disease, treatment history and follow-up will be hosted on a secured online server. In addition respondents will be asked to complete a battery of 40 questions assessing anxiety regarding their diagnosis and fear of recurrence based on previously published instruments.
Michael M. Frumovitz, MD,MPH
UT MD Anderson Cancer Center
United States: Institutional Review Board
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