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![Page 1: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/1.jpg)
Internet Use, Information Needs and Quality of Life Among
Cancer PatientsSurvey of University of Michigan Cancer Center
Patients and Caregivers
![Page 2: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/2.jpg)
Thank YouCancer Center Operations Group
Patient and Family Support Services
Clinic Team Leaders
Quality of Life Group
CanSORT
QUICCC
Lisa Smith, Matthias Kirch
![Page 3: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/3.jpg)
Health 2.080% of adult Internet users (113 million
Americans) have searched for health information online.
73% of health seekers say the Internet has improved the health information and services they receive
35% of online adults use social media for health and medical purposes. Online patient communitiesBlogs, TestimonialsConnection to health care providers
Citation: Pew American Life Survey 2006, http://www.pewinternet.org/Reports/2006/Online-Health-Search-2006.aspx?r=1
![Page 4: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/4.jpg)
Today’s PresentationInternet and social media use
Information needs
Quality of life
Implications for Survivorship Care
![Page 5: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/5.jpg)
![Page 6: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/6.jpg)
Research QuestionsHow do UMCCC patients use health information
technology (e.g. computers, internet, social media) when dealing with cancer or cancer treatments?
What are the information and social support needs of UMCCC patients?
What are the major challenges to improving quality of life for UMCCC patients?
![Page 7: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/7.jpg)
MCancer Survey 2010Purpose: The purpose of this survey is to learn more about
how patients and their family and friends find and use information about cancer.
Population: Adult cancer patients (age 18+) seeking care at the University of Michigan Cancer Center clinics and accompanying friends and family members during the time of survey collection
Setting: Clinic waiting areas throughout the Cancer Center
Study time period: August 2010 until early September 2010
TODAY: adult cancer patient data
![Page 8: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/8.jpg)
Use of Internet, cell phones & social media
Perceived usefulness of Internet, cell
phones & social media
Information and social support
needsQuality of
life
• Pew Internet & American Life Project
• HINTS Survey 2007
• New questions created for survey
• Pew Internet & American Life Project
• Janz & Piette: Baseline survey with LA SEER
• Griggs et al. (2006) Information Needs and Sources for Distribution
• Janz & Piette: Baseline survey with LA SEER
• Griggs et al. (2006) Information Needs and Sources for Distribution
• Fact G• SF36 Vitality
Subscale• Distress
Thermometer
• Zarit Burden Interview Scale
Conceptual Framework
![Page 9: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/9.jpg)
ResultsRespondent characteristics
Internet use
Social media
Online activities
Online experiences
Information needs
Social support needs
Quality of life/Distress
![Page 10: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/10.jpg)
ResultsCompleted surveys: 1660
Response rate: 75%
Total patients with cancer diagnosis: 1282
![Page 11: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/11.jpg)
Results: Gender
Female Male0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
60.0%
40.0%
![Page 12: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/12.jpg)
Results: Age
<40 40-49 50-59 60-69 70+0.0%
5.0%
10.0%
15.0%
20.0%
25.0%
30.0%
35.0%
9.3%
16.4%
27.6%28.8%
17.8%
![Page 13: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/13.jpg)
Results: Education
HS or less Some college College degree or higher
0.0%
5.0%
10.0%
15.0%
20.0%
25.0%
30.0%
35.0%
40.0%
45.0%
50.0%
22.7%
32.1%
45.2%
![Page 14: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/14.jpg)
Results: Race/Ethnicity
Afric
an A
mer
ican
Whi
te
Amer
ican
Indi
an
Asia
n
Hispa
nic/La
tino
Other
/Mul
tirac
ial
0.0%10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
5.1%
88.4%
0.2% 2.1% 1.6% 2.6%
![Page 15: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/15.jpg)
Results: Cancer Diagnoses
Brea
st C
ance
r
Leuk
emia
Gynec
olog
ic
Urolo
gic
Cutan
eous
Gastro
Conne
ctive
Tiss
ue
Headn
eck
Thor
acic
Blad
der
0
50
100
150
200
250
300 277 267
127 124 118102
36 31 27 21
![Page 16: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/16.jpg)
Results: Years since Diagnosis
<1 year 1-2 years 3-9 years 10 or more years
0.0%
5.0%
10.0%
15.0%
20.0%
25.0%
30.0%
35.0%
22.6%
28.7%31.2%
17.5%
![Page 17: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/17.jpg)
Results: Use of Information Technology
Have
a ho
me
com
pute
r
Use th
e in
tern
et
Have
broa
dban
d co
nnec
tion*
Use soc
ial m
edia
*0.0%
20.0%40.0%60.0%80.0%
100.0% 87.2% 88.1% 93.2%
47.2%
* Among internet users
![Page 18: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/18.jpg)
ResultsRespondent characteristics
Internet use
Social media
Online activities
Online experiences
Information needs
Social support needs
Quality of life/Distress
![Page 19: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/19.jpg)
Results: Internet Use
Female Male0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%89.8%
85.4%
Gender
![Page 20: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/20.jpg)
Results: Internet Use
<50 50-69 70+ 0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0% 96.4%91.0%
67.2%
Age (years)
![Page 21: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/21.jpg)
Results: Internet Use
High School or Less
Some College College Degree or Higher
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
66.1%
91.0%96.4%
Education
![Page 22: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/22.jpg)
Results: Internet Use
Brea
st C
ance
r
Leuk
emia
Gynec
olog
ic
Urolo
gic
Cutan
eous
Gastro
Conne
ctive
Tiss
ue
Headn
eck
Thor
acic
Blad
der
0.0%10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%90.7% 88.4%
93.2%86.3% 85.1%
80.2%85.7% 89.3% 90.5%
94.7%
![Page 23: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/23.jpg)
Internet UseGenerally high levels of Internet use
Broadband access commonExperienced users
Expected associations with age and educationLittle difference by genderOver 2 in 3 cancer patients over the age of 70
have internet access
High rates of Internet use across cancer diagnoses
![Page 24: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/24.jpg)
ResultsRespondent characteristics
Internet use
Social media
Online activities
Online experiences
Information needs
Social support needs
Quality of life/Distress
![Page 25: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/25.jpg)
Results: Use of Information Technology
Have
a ho
me
com
pute
r
Use th
e in
tern
et
Have
broa
dban
d co
nnec
tion*
Use soc
ial m
edia
*0.0%
20.0%40.0%60.0%80.0%
100.0% 87.2% 88.1% 93.2%
47.2%
* Among internet users
![Page 26: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/26.jpg)
Results: Years of Use by Type of Internet User
1 year or less 2-5 years More than 5 years0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
4.7%
15.2%
80.1%
50.1%44.2%
5.7%
All Internet Users Social Media Users
![Page 27: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/27.jpg)
Results: Social Media
Facebook Linkedin MySpace Twitter0
50
100
150
200
250
300
350
400
450
500 467
7752 40
![Page 28: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/28.jpg)
Results: Social Media
Female Male0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
52.7%
32.0%
Gender
![Page 29: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/29.jpg)
Results: Social Media
<50 50-69 70+ 0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
67.7%
39.9%
16.7%
Age (years)
![Page 30: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/30.jpg)
Results: Social Media
Brea
st C
ance
r
Leuk
emia
Gynec
olog
ic
Urolo
gic
Cutan
eous
Gastro
Conne
ctive
Tiss
ue
Headn
eck
Thor
acic
Blad
der
0.0%10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
50.4% 47.5%53.6%
31.2%
42.9%
54.6%
64.0%
47.6%
17.7% 18.8%
![Page 31: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/31.jpg)
Social MediaLess than half of cancer patients using social
mediaRapid adoptionNew users
Substantial differences related to gender and ageLess difference related to education
Substantial differences in social media use for patients with different cancer diagnosesLikely due to age and gender of patients
![Page 32: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/32.jpg)
ResultsRespondent characteristics
Internet use
Social media
Online activities
Online experiences
Information needs
Social support needs
Quality of life/Distress
![Page 33: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/33.jpg)
Results: Searching for Cancer Information Online
Female Male0.0%
10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
69.9%63.3%
15.2%21.1%
14.8% 15.6%
Searches for self Someone else searchesNo one searches
Gender
![Page 34: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/34.jpg)
Results: Searching for Cancer Information Online
<50 50-69 70+ 0.0%
10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
81.6%
70.5%
38.0%
10.0%16.7%
29.4%
8.4%12.8%
32.6%
Searches for self Someone else searchesNo one searches
Age (years)
![Page 35: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/35.jpg)
Results: Online Activities
Info about doctors, hospitals, medical treatments
Read about other patients' experiences
Posted updates for family and friends
Communicate with doctor's office
Wrote about health experiences
Kept track of personal health information
Participated in online cancer support group
Wrote in diary or blog
0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0%
69.3%
58.4%
42.9%
35.6%
22.1%
20.6%
12.2%
9.1%
![Page 36: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/36.jpg)
Online ActivitiesLarge majority of patients searching for
themselves
Substantial differences related to gender, age, and education
Some differences in searching related to cancer diagnosis
“Reading” more common than “writing”
Formal participation in online communities/groups rare
![Page 37: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/37.jpg)
ResultsRespondent characteristics
Internet use
Social media
Online activities
Online experiences
Information needs
Social support needs
Quality of life/Distress
![Page 38: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/38.jpg)
Results: Usefulness of Online Cancer Information
Not at all use-ful
A little useful Somewhat useful
Very useful0.0%
10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
3.0%
15.5%
40.3% 41.3%
![Page 39: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/39.jpg)
Results: Usefulness of Online Cancer Information
Brea
st C
ance
r
Leuk
emia
Gynec
olog
ic
Urolo
gic
Cutan
eous
Gastro
Conne
ctive
Tiss
ue
Headn
eck
Thor
acic
Blad
der
0.0%10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%84.9% 86.3%
75.6%82.9%
73.0%78.0%
63.6%68.2%
80.0%85.7%
% s
om
ew
hat/
very
usefu
l
![Page 40: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/40.jpg)
Results: Usefulness of Online Social Media
<50 50-69 70+ 0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
40.6%
23.6%
9.1%
Age (years)
% s
om
ew
hat/
very
usefu
l
![Page 41: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/41.jpg)
Results: Usefulness of Online Cancer Information
Diagn
osis
Trea
tmen
t opt
ions
Side
effec
ts
Sym
ptom
s
Emot
ions
How to
talk to
fam
ily a
nd fr
iend
s
Your
rela
tions
hip
Sexu
al fu
nctio
ning
Recov
ery
Long
-term
effec
ts
Health
car
e
Health
ier l
ifest
yle
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
76.4%71.2%
62.6%58.1%
45.5%40.9% 37.7% 35.2%
46.9%41.8% 42.9%
58.7%
% s
om
ew
hat
or
very
usefu
l
![Page 42: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/42.jpg)
Results: Experience of Web Searches
Confident Reassured Relieved or comforted
Eager0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
68.5% 68.2%
50.6%41.7%
% s
om
ew
hat/
very
usefu
l
![Page 43: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/43.jpg)
Results: Experience of Web Searches
Over-whelmed
Confused Frightened Frustrated0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
45.3%36.2% 33.1%
27.4%
% s
om
ew
hat/
very
usefu
l
![Page 44: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/44.jpg)
Online ExperiencesThe majority of cancer patients find online information to be
useful
Social media currently much less likely to be perceived as useful
Perceived usefulness strongly related to age, particularly for social media
Currently Internet is rated as more useful for information about diagnosis and treatment and dealing with physical symptoms and less so for dealing with emotions, relationship, and family issues.
Positive and negative experiences common among patients looking for cancer information online
![Page 45: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/45.jpg)
ResultsRespondent characteristics
Internet use
Social media
Online activities
Online experiences
Information needs
Social support needs
Quality of life/Distress
![Page 46: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/46.jpg)
Results: Information Needs
Diagn
osis
Trea
tmen
t
Side
effec
ts
Phys
ical
sym
ptom
s
Emot
ions
Talk to
fam
ily
Your
rela
tions
hip
Sexu
al fu
nctio
ning
Recov
ery
0.0%10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
55.6%63.0% 66.2% 65.0%
60.1%
46.1%51.1% 47.5%
63.4%
![Page 47: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/47.jpg)
Results: Information Needs
Female Male0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
72.0% 74.8%
Gender
![Page 48: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/48.jpg)
Results: Information Needs
<50 50-69 70+ 0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
77.5%72.6%
67.4%
Age (years)
![Page 49: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/49.jpg)
Results: Information Needs
High School or Less
Some College College Degree or Higher
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
61.1%
74.9% 78.2%
Education
![Page 50: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/50.jpg)
Results: Information Needs
Brea
st C
ance
r
Leuk
emia
Gynec
olog
ic
Urolo
gic
Cutan
eous
Gastro
Conne
ctive
Tiss
ue
Headn
eck
Thor
acic
Blad
der
0.0%10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
69.7%77.9%
70.9% 68.6% 68.6%
79.4% 80.6%
61.3%
85.2%81.0%
![Page 51: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/51.jpg)
Information NeedsThe majority of patients report some unmet
information needsAcross the continuum of cancer care
Younger and more educated patients more likely to report unmet information needs
Unclear if different related to cancer diagnosis
![Page 52: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/52.jpg)
ResultsRespondent characteristics
Internet use
Social media
Online activities
Online experiences
Information needs
Social support needs
Quality of life/Distress
![Page 53: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/53.jpg)
Results: Social Support Needs
Diagn
osis
Trea
tmen
t opt
ions
Side
-effec
ts
Phys
ical
sym
ptom
s
Emot
ions
Recov
ery
Long
-term
sid
e eff
ects
Health
car
e
Health
ier l
ivin
g0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
38.3% 41.1% 42.1% 42.4%48.2% 45.4% 48.5%
43.4% 45.6%
![Page 54: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/54.jpg)
Results: Social Support Needs
Any social support needs
Diagnosis and
treatment
Symptoms Survivorship0.0%
10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
52.4%
38.4%44.8% 47.3%
![Page 55: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/55.jpg)
Results: Social Support Needs
Female Male0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
52.7%
74.8%
Gender
![Page 56: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/56.jpg)
Results: Social Support Needs
<50 50-69 70+ 0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
56.6%52.1%
46.6%
Age (years)
![Page 57: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/57.jpg)
Results: Social Support Needs
High School or Less
Some College College Degree or Higher
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
48.3%55.3% 52.8%
Education
![Page 58: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/58.jpg)
Results: Social Support Needs
Brea
st C
ance
r
Leuk
emia
Gynec
olog
ic
Urolo
gic
Cutan
eous
Gastro
Conne
ctive
Tiss
ue
Headn
eck
Thor
acic
Blad
der
0.0%10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
50.9% 53.9%49.6% 50.0%
42.4%
61.8%55.6%
61.3% 63.0% 61.9%
![Page 59: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/59.jpg)
Social Support NeedsAbout half of cancer patients report unmet
social support needs
Social support needs are common across the continuum of cancer care
Men and younger patients are more likely to report unmet social support needs
Unclear if differences related to cancer diagnosis
![Page 60: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/60.jpg)
ResultsRespondent characteristics
Internet use
Social media
Online activities
Online experiences
Information needs
Social support needs
Quality of life/Distress
![Page 61: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/61.jpg)
Results: Distress
![Page 62: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/62.jpg)
Results: Distress
0 1 2 3 4 5 6 7 8 9 100.0%
5.0%
10.0%
15.0%
20.0%
25.0%
20.2%
12.6%11.9%12.2%
6.4%
11.1%
6.2%7.7% 7.0%
2.5% 2.3%
Distress Thermometer Score
![Page 63: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/63.jpg)
Results: Distress
0 1 2 3 4 5 6 7 8 9 100.0%
5.0%
10.0%
15.0%
20.0%
25.0%
20.2%
12.6%11.9%12.2%
6.4%
11.1%
6.2%7.7% 7.0%
2.5% 2.3%
Distress Thermometer Score
Clinically significant dis-tress level: 43.2%
![Page 64: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/64.jpg)
Results: Distress
Female Male0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
48.5%
35.7%
Gender
![Page 65: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/65.jpg)
Results: Distress
<50 50-69 70+ 0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
50.4%42.0%
35.6%
Age (years)
![Page 66: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/66.jpg)
Results: Distress
High School or Less
Some College College Degree or Higher
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
40.8%48.8%
40.8%
Education
![Page 67: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/67.jpg)
Results: Distress
Brea
st C
ance
r
Leuk
emia
Gynoc
olog
ic
Urolo
gic
Cutan
eous
Gastro
Conne
ctive
Tiss
ue
Headn
eck
Thor
acic
Blad
der
0.0%10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
44.1% 46.2% 49.0%
34.2%
49.0%
38.5%
52.9%
28.0%33.3%
20.0%
![Page 68: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/68.jpg)
Results: Distress
<1 year 1-2 years 3-9 years 10+ years0.0%
10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
42.0% 41.0%45.5% 42.3%
Years since diagnosis
![Page 69: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/69.jpg)
Results: DistressProblem Areas
Physical Emotional Practical Family0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
68.1%
51.0%
23.9%
14.9%
![Page 70: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/70.jpg)
Results: DistressPhysical Problems
Fatig
ue
Slee
pPa
in
Ting
ling
Mem
ory
Skin
dry
/itch
y
Eatin
g
Feel
ing
swol
len
Gettin
g ar
ound
Const
ipat
ion
Appea
ranc
e
Diarrhe
a
Nause
a
Indi
gest
ion
Sexu
al
Nose
dry/
cong
este
d
Breat
hing
Mou
th sor
es
Urinat
ion
Bathi
ng
Feve
r0
100
200
300
400
500
600552
392
325
278 277
218196
180 180 173 169152 150 140 132 129
10589 88 79
43
![Page 71: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/71.jpg)
Results: DistressAny Physical Problems
Female Male0.0%
10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
67.5% 69.1%
Gender
![Page 72: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/72.jpg)
Results: DistressAny Physical Problems
<50 50-69 70+0.0%
10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
69.4% 68.9%63.8%
Age (years)
![Page 73: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/73.jpg)
Results: DistressAny Physical Problems
High School or Less
Some College College Degree or Higher
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
60.8%
73.5%68.3%
Education
![Page 74: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/74.jpg)
Results: DistressAny Physical Problems
Brea
st C
ance
r
Leuk
emia
Gynec
olog
ic
Urolo
gic
Cutan
eous
Gastro
Conne
ctive
Tiss
ue
Headn
eck
Thor
acic
Blad
der
0.0%10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
64.3%
74.2%
61.4%
73.3%
55.1%
64.7%
80.6%
67.7% 70.4% 66.7%
![Page 75: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/75.jpg)
Results: DistressAny Physical Problems
<1 year 1-2 years 3-9 years 10+ years0.0%
10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
65.6%70.0% 66.0%
74.7%
Years since diagnosis
![Page 76: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/76.jpg)
Results: DistressEmotional Problems
0
100
200
300
400
500
600
499
369
303277
228201
![Page 77: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/77.jpg)
Results: DistressAny Emotional Problems
Female Male0.0%
10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
54.9%45.1%
Gender
![Page 78: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/78.jpg)
Results: DistressAny Emotional Problems
<50 50-69 70+0.0%
10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
62.2%
50.6%
36.7%
Age (years)
![Page 79: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/79.jpg)
Results: DistressAny Emotional Problems
High School or Less
Some College College Degree or Higher
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
44.8%54.3% 52.3%
Education
![Page 80: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/80.jpg)
Results: DistressAny Emotional Problems
Brea
st C
ance
r
Leuk
emia
Gynec
olog
ic
Urolo
gic
Cutan
eous
Gastro
Conne
ctive
Tiss
ue
Headn
eck
Thor
acic
Blad
der
0.0%10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
51.6% 49.4%57.5%
45.2%49.2%
52.9%58.3%
51.6% 51.8%
28.6%
![Page 81: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/81.jpg)
Results: DistressAny Emotional Problems
<1 year 1-2 years 3-9 years 10+ years0.0%
10.0%20.0%30.0%40.0%50.0%60.0%70.0%80.0%90.0%
100.0%
55.2% 51.0% 52.8%47.4%
Years since diagnosis
![Page 82: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/82.jpg)
Results: Information Needs and Distress
All info needs
Cancer info Symptoms info
Social info Survivor info
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
31.7%35.4%
30.0%33.3% 33.8%
46.8% 48.2% 49.8%54.1%
47.3%
No information needs Information needs
Type of information need
% C
lin
ically s
ign
ifican
t d
istr
ess
![Page 83: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/83.jpg)
Results: Internet Search Experience and Distress
Negative Neutral Positive0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
53.6%
42.2% 39.7%
Rating of Internet Search Experience
% C
lin
ically s
ign
ifican
t d
istr
ess
![Page 84: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/84.jpg)
Quality of Life/DistressNearly half of cancer patients report clinically
meaningful levels of distress
Women and younger patients more likely to report distress
Substantial differences related to cancer diagnosis
Distress does not appear to decrease with time since diagnosis
Higher distress related to Unmet information needs Negative experiences searching for cancer information
online
![Page 85: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/85.jpg)
LimitationsSingle center survey
Cross sectional survey
Some cancer diagnoses under-represented
Information about current treatment status not collected
![Page 86: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/86.jpg)
Some thoughts… Internet use common among UMCCC patients
Experienced users with broad band access Social media less so at present
Internet generally perceived as useful, but negative experiences are common as well
Unmet information and social support needs very common
Clinically meaningful distress also common Does not seem to decrease with time since diagnosis Associated with unmet information and social support needs Associated with negative online experiences
![Page 87: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/87.jpg)
Danger: Technology focused solutions
Patients Technology
![Page 88: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/88.jpg)
Goal: Patient-Centered Care
Patients Technology
![Page 89: Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers.](https://reader035.fdocuments.us/reader035/viewer/2022070412/56649e165503460f94b0108e/html5/thumbnails/89.jpg)
Family and Friends
Primary Oncologist
Primary Care Provider
Cancer Specialty Services i.e., symptom management; late effects
Other
Triggers for Notification and Referral
Tailored Self Management
Ongoing Assessment of Quality of LifeBetween Visits
Post-Treatment SurvivorshipDX Treatment
Patient Centered Survivorship Care