Internet Use, Information Needs and Quality of Life Among

Cancer PatientsSurvey of University of Michigan Cancer Center

Patients and Caregivers

Thank YouCancer Center Operations Group

Patient and Family Support Services

Clinic Team Leaders

Quality of Life Group

CanSORT

QUICCC

Lisa Smith, Matthias Kirch

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

Today’s PresentationInternet and social media use

Information needs

Quality of life

Implications for Survivorship Care

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?

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

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

ResultsRespondent characteristics

Internet use

Social media

Online activities

Online experiences

Information needs

Social support needs

Quality of life/Distress

ResultsCompleted surveys: 1660

Response rate: 75%

Total patients with cancer diagnosis: 1282

Results: Gender

Female Male0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

70.0%

60.0%

40.0%

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%

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%

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%

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

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%

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

ResultsRespondent characteristics

Internet use

Social media

Online activities

Online experiences

Information needs

Social support needs

Quality of life/Distress

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

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)

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

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%

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

ResultsRespondent characteristics

Internet use

Social media

Online activities

Online experiences

Information needs

Social support needs

Quality of life/Distress

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

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

Results: Social Media

Facebook Linkedin MySpace Twitter0

50

100

150

200

250

300

350

400

450

500 467

7752 40

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

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)

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%

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

ResultsRespondent characteristics

Internet use

Social media

Online activities

Online experiences

Information needs

Social support needs

Quality of life/Distress

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

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)

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%

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

ResultsRespondent characteristics

Internet use

Social media

Online activities

Online experiences

Information needs

Social support needs

Quality of life/Distress

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%

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

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

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

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

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

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

ResultsRespondent characteristics

Internet use

Social media

Online activities

Online experiences

Information needs

Social support needs

Quality of life/Distress

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%

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

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)

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

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%

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

ResultsRespondent characteristics

Internet use

Social media

Online activities

Online experiences

Information needs

Social support needs

Quality of life/Distress

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%

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%

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

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)

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

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%

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

ResultsRespondent characteristics

Internet use

Social media

Online activities

Online experiences

Information needs

Social support needs

Quality of life/Distress

Results: Distress

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

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%

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

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)

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

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%

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

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%

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

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

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)

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

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%

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

Results: DistressEmotional Problems

0

100

200

300

400

500

600

499

369

303277

228201

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

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)

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

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%

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

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

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

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

LimitationsSingle center survey

Cross sectional survey

Some cancer diagnoses under-represented

Information about current treatment status not collected

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

Danger: Technology focused solutions

Patients Technology

Goal: Patient-Centered Care

Patients Technology

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