ASPO Abstracts
End-of-life information needs: Differences between cancer survivors and caregivers contacting NCI's Cancer Information Service
Category: Behavioral Science & Health Communication
Conference Year: 2021
Abstract Body:
Study Purpose: Understanding the end of life (EOL) information needs of cancer survivors and
caregivers may help tailor services to these specific audiences.
Methods: Using data from the National Cancer Institute's Cancer Information Service (CIS) – a
longstanding, multi-channel resource for trusted cancer information in English and Spanish – we
explored similarities and differences in EOL information needs among survivors and caregivers from
September 2018 – October 2020. Descriptive analyses were performed, comparing interactions
between the two groups regarding language of service, point of CIS access (i.e., telephone, LiveHelp
[instant chat], email, social media), discussion topics, cancer site discussed, and referrals provided by
the CIS.
Results: A total of 1,131 CIS interactions involved EOL discussions across caregivers (90%; n=1,017)
and survivors (10%; n=114). Almost 90% of survivors and caregivers contacted the CIS through the
telephone and LiveHelp. Lung, pancreatic, and breast cancer were the top three cancer sites
discussed in the context of EOL. Specific patterns emerged across the two user types' respective EOL
inquiries. Among those contacting the CIS in Spanish, a higher proportion of caregivers engaged in
EOL discussions more often than survivors (13.5% vs. 7.0%, X2=3.82, p=.051). Regarding discussion
topics, caregivers inquired about treatment options more often than survivors (19% vs. 11%, X2=3.69,
p=.055), while survivors inquired more often than caregivers about coping (18% vs. 11%, X2=5.07,
p=.024) and palliative/hospice care (31% vs. 22%, X2=4.15, p=.042). Although CIS staff referred both
groups to a health professional(s) at similar frequencies (70%), survivors were more often referred to
national or community-based organizations such as the National Hospice and Palliative Care
Organization or https://getpalliativecare.org/ for additional resources compared to caregivers (40% vs.
31%, X2=3.87, p=0.049).
Conclusions: Caregivers are the primary drivers of EOL discussions with the CIS. Survivors, however,
more often seek information about coping, emotional distress, and palliative care/hospice, particularly
when treatment options may have become limited.
Keywords: cancer information- seeking, end-of-life, cancer survivors, caregivers