1. Internet Use, Information Needs and Quality of Life Among Cancer Patients Survey of University of Michigan Cancer Center Patients and Caregivers

2. Thank You Cancer Center Operations Group Patient and Family Support Services Clinic Team Leaders Quality of Life Group CanSORT QUICCC Lisa Smith, Matthias Kirch

3. Health 2.0 80% 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 communities Blogs, Testimonials Connection to health care providers Citation: Pew American Life Survey 2006, http://www.pewinternet.org/Reports/2006/Online-Health-Search-2006.aspx?r=1

4. Today’s Presentation Internet and social media use Information needs Quality of life Implications for Survivorship Care

6. Research Questions How 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?

7. MCancer Survey 2010 Purpose: 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

8. Use of Internet, cell phones & social media Perceived usefulness of Internet, cell phones & social media Information and social support needs Quality 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

9. Results Respondent characteristics Internet use Social media Online activities Online experiences Information needs Social support needs Quality of life/Distress

10. Results Completed surveys: 1660 Response rate: 75% Total patients with cancer diagnosis: 1282

11. Results: Gender

12. Results: Age

13. Results: Education

14. Results: Race/Ethnicity

15. Results: Cancer Diagnoses

16. Results: Years since Diagnosis

17. Results: Use of Information Technology * Among internet users

18. Results Respondent characteristics Internet use Social media Online activities Online experiences Information needs Social support needs Quality of life/Distress

19. Results: Internet Use

23. Internet Use Generally high levels of Internet use Broadband access common Experienced users Expected associations with age and education Little difference by gender Over 2 in 3 cancer patients over the age of 70 have internet access High rates of Internet use across cancer diagnoses

24. Results Respondent characteristics Internet use Social media Online activities Online experiences Information needs Social support needs Quality of life/Distress

25. Results: Use of Information Technology * Among internet users

26. Results: Years of Use by Type of Internet User

27. Results: Social Media

31. Social Media Less than half of cancer patients using social media Rapid adoption New users Substantial differences related to gender and age Less difference related to education Substantial differences in social media use for patients with different cancer diagnoses Likely due to age and gender of patients

32. Results Respondent characteristics Internet use Social media Online activities Online experiences Information needs Social support needs Quality of life/Distress

33. Results: Searching for Cancer Information Online

37. Results: Online Activities

39. Online Activities Large 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

40. Results Respondent characteristics Internet use Social media Online activities Online experiences Information needs Social support needs Quality of life/Distress

41. Results: Usefulness of Online Cancer Information

43. Results: Usefulness of Online Social Media

46. * Other cancers had fewer than 20 respondents

47. Results: Usefulness of Online Social Media

48. Results: Usefulness of Online Cancer Information

49. Results: Experience of Web Searches

51. Results: Usefulness of Online Searches and Social Media

52. Online Experiences The 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

53. Results Respondent characteristics Internet use Social media Online activities Online experiences Information needs Social support needs Quality of life/Distress

54. Results: Information Needs

59. Information Needs The majority of patients report some unmet information needs Across the continuum of cancer care Younger and more educated patients more likely to report unmet information needs Unclear if different related to cancer diagnosis

60. Results Respondent characteristics Internet use Social media Online activities Online experiences Information needs Social support needs Quality of life/Distress

61. Results: Social Support Needs

67. Social Support Needs About 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

68. Results Respondent characteristics Internet use Social media Online activities Online experiences Information needs Social support needs Quality of life/Distress

69. Results: Distress

77. Results: Distress Problem Areas

78. Results: Distress Physical Problems

79. Results: Distress Any Physical Problems

84. Results: Distress Emotional Problems

85. Results: Distress Any Emotional Problems

90. Results: Information Needs and Distress

91. Results: Internet Search Experience and Distress

92. Quality of Life/Distress Nearly 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

93. Limitations Single center survey Cross sectional survey Some cancer diagnoses under-represented Information about current treatment status not collected

94. 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

95. Danger: Technology focused solutions Patients Technology

96. Goal: Patient-Centered Care Patients Technology

97. 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 Life Between Visits Post-Treatment Survivorship DX Treatment Patient Centered Survivorship Care