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Health-related social media use and preferences of adolescent and young adult cancer patients for virtual programming

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Abstract

Purpose

Adolescents and young adults (AYA) with cancer are increasingly using the internet and social media (SM) for cancer-related information. AYA face specific challenges and thus require tailored resources that meet their needs. We describe the internet and SM preferences of AYA related to their cancer information seeking behaviors and their preferences for a future resource compared to middle-aged adults (MAA).

Methods

Cancer patients completed a cross-sectional survey related to their internet and SM usage, cancer information, and preferences for future resources. Chi-square tests were used to compare AYA and MAA.

Results

The mean (±SD) age in the AYA group was 30±6.1 years (n = 129); in MAA 55±6.7 years (n = 157). In general, AYA preferred internet sites over SM platforms for cancer-related information and prefer a website platform over a SM platform for a new resource. Few AYA were aware of hospital-based AYA-specific resources. MAA were less likely to use SM compared with AYA (13% vs 4%, p = 0.01); however, websites and SM platforms that were used were similar between the 2 groups. Participants endorsed having already researched certain topics – yet, these were also those desired in a new resource. Compared to MAA, AYA sought more information on diet/nutrition, physical activity, exercise/fitness, fertility, sexual health, and body image (all p values < 0.05).

Conclusion

AYA and MAA use similar resources on the internet and SM, but AYA sought information related to specific needs. Development of future resources should focus on an internet-based platform rather than a SM platform, coupled with promoting awareness of the resource.

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Funding

This research was supported in part by the Alan B Brown Chair in Molecular Genomics, the Lusi Wong Family Fund, and the Posluns Family Foundation.

Author information

Authors and Affiliations

  1. Division of Medical Oncology and Hematology, Department of Medicine, Princess Margaret Cancer Centre/University Health Network and University of Toronto, Toronto, Ontario, Canada

    Reenika Aggarwal, Katrina Hueniken, Lawson Eng, Shayan Kassirian, Ilana Geist, Karmugi Balaratnam, Mindy Liang, Arielle Geist, Laura Mitchell, Alexander Magony, M. Catherine Brown, Geoffrey Liu & Abha A. Gupta

  2. Ontario Cancer Institute, Toronto, Ontario, Canada

    Reenika Aggarwal, Katrina Hueniken, Lawson Eng, Shayan Kassirian, Ilana Geist, Karmugi Balaratnam, Mindy Liang, Chelsea B. Paulo, Arielle Geist, Pryangka Rao, Alexander Magony, Jennifer M. Jones, M. Catherine Brown, Jackie Bender, Wei Xu, Geoffrey Liu & Abha A. Gupta

  3. Department of Medicine, University Health Network, Toronto, Ontario, Canada

    Lawson Eng, Geoffrey Liu & Abha A. Gupta

  4. Department of Nursing, Princess Margaret Cancer Centre/University Health Network, 610 University Ave, Toronto, ON, M5G 2C1, Canada

    Laura Mitchell

  5. Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada

    Jennifer M. Jones, Jackie Bender, Wei Xu & Geoffrey Liu

  6. Division of Gastroenterology, St. Michael’s Hospital, Toronto, Ontario, Canada

    Samir C. Grover

  7. Department of Biostatistics, Princess Margaret Cancer Centre/University Health Network and University of Toronto, Toronto, Ontario, Canada

    Wei Xu & Geoffrey Liu

  8. Department of Medical Oncology, Princess Margaret Cancer Center, 610 University Ave, Toronto, Canada

    Geoffrey Liu

  9. Department of Pediatric Oncology, The Hospital for Sick Children, Toronto, Ontario, Canada

    Abha A. Gupta

Authors
  1. Reenika Aggarwal
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  2. Katrina Hueniken
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  3. Lawson Eng
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  4. Shayan Kassirian
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  5. Ilana Geist
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  6. Karmugi Balaratnam
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  7. Mindy Liang
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  8. Chelsea B. Paulo
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  9. Arielle Geist
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  10. Pryangka Rao
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  11. Laura Mitchell
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  12. Alexander Magony
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  13. Jennifer M. Jones
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  14. Samir C. Grover
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  15. M. Catherine Brown
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  16. Jackie Bender
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  17. Wei Xu
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  18. Geoffrey Liu
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  19. Abha A. Gupta
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Corresponding author

Correspondence to Geoffrey Liu.

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There are no financial disclosures from any author.

Conflict of interest

The authors declare that they have no conflict of interest.

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Appendices

Appendix 1

Appendix 2

Age group sensitivity analysis

 

15–19 (N = 9)

20–24 (N = 23)

25–29 (N = 34)

30–34 (N = 32)

35–39 (N = 31)

P value

Facebook (%)

89

83

88

84

90

0.917

Twitter (%)

33

52

24

31

48

0.129

Instagram (%)

44

70

71

63

52

0.383

Snapchat (%)

44

61

38

31

16

0.014

WhatsApp (%)

11

44

53

63

42

0.071

Other (%)

22

4

3

3

7

0.262

None (%)

11

0

3

3

7

0.563

  1. Responses to the question “Which social media platforms do you use?” stratified by age group
 

15–19 (N = 9)

20–24 (N = 23)

25–29 (N = 34)

30–34 (n = 32)

35–39 (N = 31)

P value

Canadian Cancer Society (%)

44

52

59

50

71

0.412

Princess Margaret Website (%)

0

22

21

28

32

0.334

WebMD (%)

44

17

50

38

61

0.022

Personal blogs (%)

0

9

24

16

29

0.164

Other websites (%)

0

9

35

22

29

0.065

Discussion forums (%)

0

0

15

13

16

0.249

Facebook (%)

11

17

24

22

23

0.924

YouTube (%)

33

13

9

16

13

0.451

Reddit (%)

11

9

0

6

3

0.451

Instagram (%)

0

9

9

9

3

0.752

Twitter (%)

0

0

3

0

7

0.419

Snapchat (%)

0

0

6

0

0

0.225

Direct messaging (%)

0

13

6

0

10

0.266

Other (%)

11

4

3

3

7

0.832

Do not use (%)

33

35

9

16

3

0.009

  1. Responses to the question “Which online resources have you used to obtain information and support related to cancer?” stratified by age group
 

15–19 (N = 9)

20–24 (N = 23)

25–29 (N = 34)

30–34 (N = 32)

35–39 (n = 30)

P value

Causes, risk factors, symptoms (%)

44

57

82

66

83

0.037

Treatment options (%)

44

39

65

50

63

0.268

Prognosis, outcome (%)

11

52

65

44

50

0.063

Medical research (%)

33

22

53

38

40

0.213

Diet, nutrition (%)

11

22

50

44

43

0.088

Physical activity recommendations (%)

11

26

35

28

37

0.592

Fertility info (%)

0

22

47

44

30

0.036

Exercise, fitness (%)

11

22

35

41

33

0.379

Physicians, specialists (%)

11

9

38

28

23

0.108

Physician ratings (%)

11

17

35

19

30

0.328

Online support groups (%)

0

17

18

22

43

0.033

Sexual health (%)

0

9

29

22

17

0.169

Body image (%)

0

13

15

19

27

0.374

Cancer-specific communities (%)

11

9

15

9

27

0.302

Peer support (%)

0

9

9

3

23

0.073

Family/caregiver support (%)

0

4

3

0

17

0.038

Virtual support (%)

0

0

6

0

13

0.082

Face-to-face support groups (%)

0

4

0

0

10

0.125

School, work (%)

11

4

0

3

0

0.282

Other (%)

0

4

0

0

3

0.564

Found nothing useful (%)

11

4

6

6

7

0.971

Have not used resources for cancer care (%)

44

39

6

22

20

0.019

  1. Responses to the question “Which information topics have you obtained online to help with your cancer care?” stratified by age group
 

15–19 (N = 7)

20–24 (N = 17)

25–29 (N = 30)

30–34 (N = 26)

35–39 (N = 29)

P value

Causes, risk factors, symptoms (%)

71

65

80

81

76

0.761

Treatment options (%)

57

59

70

69

83

0.428

Prognosis, outcome (%)

43

71

53

62

66

0.627

Medical research (%)

43

41

50

62

48

0.721

Diet, nutrition (%)

29

24

53

58

52

0.157

Physical activity recommendations (%)

29

35

53

46

52

0.62

Exercise, fitness (%)

43

29

40

58

38

0.409

Physicians, specialists (%)

0

12

47

35

41

0.037

Fertility info (%)

0

18

33

46

31

0.116

Physician ratings (%)

14

6

27

15

35

0.165

Sexual health (%)

14

12

27

35

21

0.453

Body image (%)

29

24

20

27

24

0.977

Online support groups (%)

0

0

17

19

41

0.006

Cancer-specific communities (%)

0

18

20

15

21

0.753

School, work (%)

29

24

3

12

7

0.124

Peer support (%)

0

6

13

4

21

0.229

Family/caregiver support (%)

0

12

3

4

17

0.229

Virtual support (%)

0

0

3

0

14

0.087

Other (%)

0

0

3

0

7

0.507

  1. Responses to the question “Which information topics are you looking for in a resource to help with your cancer care?” stratified by age group
 

15–19 N = 9)

20–24 (N = 23)

25–29 (N = 34)

30–34 (N = 32)

35–39 (N = 31)

P value

Management & treatment of side effects (%)

56

65

77

81

81

0.374

Treatment options (%)

78

57

71

69

81

0.409

Further explanations (%)

33

57

74

75

68

0.121

Natural progression of Cancer (%)

67

52

74

66

65

0.596

Personal recommendations (%)

44

57

79

69

58

0.174

Wellness programs (%)

56

26

68

75

71

0.002

Late/long term side effects of treatment (%)

33

57

68

59

74

0.202

Chances of survival/cure (%)

67

57

56

56

61

0.97

Latest research (%)

44

35

59

50

68

0.158

Alternative/complementary therapies (%)

22

22

53

66

68

0.002

How to help family with my cancer (%)

22

35

47

56

65

0.087

2nd opinion on treatment (%)

56

26

62

44

65

0.036

Emotional support (%)

22

30

56

56

65

0.044

Clinical trials (%)

11

22

47

44

65

0.007

Work/return to work (%)

11

26

44

47

55

0.078

Community support services (%)

11

9

41

31

61

0.001

Other (%)

0

0

3

0

10

0.164

Would not use this app (%)

22

17

6

3

0

0.037

  1. Responses to the question “In this online resource or application, I would information on…” stratified by age group
 

15–19 (N = 1)

20–24 (N = 8)

25–29 (N = 8)

30–34 (N = 7)

35–39 (N = 8)

P value

n

1

8

8

7

8

 

AYA Website (%)

100

88

63

86

50

0.372

Facebook (%)

0

25

38

29

25

0.936

Twitter (%)

0

0

0

0

13

0.542

Newsletter (%)

0

63

25

43

63

0.401

Instagram (%)

0

13

13

0

13

0.894

  1. Responses to the question “Which of the resources from the AYA program are you aware of?” stratified by age group
 

15–19 (N = 9)

20–24 (N = 23)

25–29 (N = 24)

30–34 (N = 32)

35–39 (N = 31)

P value

Website (%)

71

63

59

76

58

0.12

Phone App (%)

14

38

23

31

32

0.869

Facebook (%)

0

7

15

19

8

0.323

Instagram (%)

0

0

0

12

8

0.193

Twitter (%)

0

0

5

0

4

0.234

Snapchat (%)

0

0

0

4

4

0.382

  1. Responses when asked which platform they would rank as their number one preference for an online resource stratified by age group

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Aggarwal, R., Hueniken, K., Eng, L. et al. Health-related social media use and preferences of adolescent and young adult cancer patients for virtual programming. Support Care Cancer 28, 4789–4801 (2020). https://doi.org/10.1007/s00520-019-05265-3

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  • DOI: https://doi.org/10.1007/s00520-019-05265-3

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