Increased Utilization / Interaction with Advocacy Groups
As previously mentioned, COVID-19 has led to the cancellation of
in-office visits, with a shift towards telemedicine encounters. Many
ancillary and rehabilitation therapy visits, such as
speech-language-pathology (SLP) appointments, are also being delayed.
Additionally, shelter-in-place orders and social distancing precautions
have prevented many HNC patients from attending regularly scheduled
support groups. The increased detachment related to social isolation and
lack of contact from regular support groups has led many patients to
turn to HNC advocacy groups as a primary source of information regarding
their concerns on how their care will be impacted.
This shift in information gathering has been demonstrated by increases
in visits to websites of advocacy groups and the number of views of
relevant web pages. The THANC Foundation, for example, offers a
comprehensive head and neck cancer guide that touches upon all aspects
of care, from diagnosis to treatment to survivorship
(www.THANCguide.org). From March 28 to
April 26, 2020, they noticed increases in users (71,686 vs 66,472), new
users (69,806 vs 64,667), sessions (79,069 vs 74,188), and page views
(101,447 vs 96,818) compared with the month prior. One of their
COVID-19-specific information pages likewise has had 1,507 unique visits
in the last month alone. As patients are not able to see their doctors
regularly, they may be turning to online guides for sources of
information.
Additionally, there has been an increased number of phone calls, emails,
and messages on social media platforms contacting these organizations. A
SPOHNC representative has noticed that phone calls are more frequent and
lengthy, increasing from an average of 15-20 minutes to 30-35 minutes
(exact data not available). Many patients are also phoning in outside of
regular business hours to voice their general anxieties and concerns.
Similarly, the UK Macmillan Cancer Support group has noticed an uptick
in volume, with over 30% of incoming calls involving COVID-19-related
concerns11Mayor S. COVID-19: impact on cancer workforce and
delivery of care [published online ahead of print, 2020 Apr 20].Lancet Oncol . 2020;S1470-2045(20)30240-0.
doi:10.1016/S1470-2045(20)30240-0.
Advocacy groups also moderate many web-based survivor forums on which
HNC survivors can relay their general experiences, questions or comments
as well as engage with other HNC survivors. Examples include the Inspire
platform forum led by the HNCA as well as a Facebook group led by
SPOHNC. Both forums have seen large increases in activity. In fact, the
HNCA Inspire forum has had a jump in new membership from 30 new users a
month, to roughly 55-60 new monthly users over this past March and April
of 2020. Moreover, COVID-related posts on the HNCA Facebook site were
viewed by twice as many people (average of 1,200 per post compared to
the pre-COVID average of 600 per post), with the average COVID-related
post engagement (comments, likes or shares) being 14.5% versus 4% for
non-COVID-related posts on this account. The need for support during
treatment has also increased, with higher utilization of gas cards seen
by the HNCA along with a rise of requests for transportation and lodging
support through the HNCLF.
This increased utilization of advocacy organizations highlights their
important role in the lives of people affected by HNC. As the pandemic
evolves, these groups will undoubtedly continue to refine their
resources in an effort to best meet the needs of those they serve.