Introduction
TYA cancer patients and survivorship
The role of digital technology in TYA cancer patients and survivors
Organization | Website link (URL) | Description | Reference |
London Cancer | An integrated cancer system serving north-east and central London and west Essex. The network works with healthcare providers in these areas to deliver comprehensive and seamless cancer care from diagnosis, through treatment, to living with cancer and beyond. | [31] | |
Teenage Cancer Trust (TCT) | A UK-based charity providing expert treatment and support. | [32] | |
Jimmy Teens TV | A project for TYAs who have been affected by cancer with video diaries and films sharing experiences of cancer. | [33] | |
MacMillan Cancer | A UK-based charity providing support, events, campaigns to those living with or affected by cancer. | [34] | |
Youth Health Talk | A free reliable source of information about health issues through sharing real-life stories and experiences. Partnership between a charity called DIPEx and The Health Experiences Research Group (HERG), The University of Oxford Nuffield Department of Primary Care. | [35] | |
Shine Cancer Support | A UK-based charity supporting younger adults living with cancer and beyond. Provides tailored information and peer support through a range of activities including lunches, drinks evenings, online networking, etc. | [36] | |
Barts and the London Kids | Hospital website offering support and services. | [37] | |
CLIC Sargent | Provides vital emotional, practical, and financial support to young cancer patients and families during and after treatment. | [38] | |
London Sarcoma | One of the largest sarcoma services in Europe with international reputation for providing the highest quality of care to patients with sarcoma. | [39] |
Aims of the study
Methods
Study design and participants
The University College London Hospital Teenage and Young Adult Cancer Service
Procedures
At the moment…
1. What do you use to chat to friends and family? a. Phone b. Text c. Facebook d. Blackberry Messenger (BBM) e. Twitter f. Skype g. Email h. Whatsapp i. Other (please specify): _______________________________
(Respondents were asked to select all those that apply.)
2. What do you use to go online? a. Smartphone b. PC c. Laptop d. Tablet (e.g. iPad) e. Games console f. Other (please specify): _______________________________
(Respondents were asked to select all those that apply.)
3. Do you keep in touch with people you have already met who have or had cancer? e.g. people you met in hospitals, clinics, online groups, etc.
(Respondents were asked to select “yes” or “no”. If the latter was selected, they skipped question 4.)
4. If yes, how do you keep in touch? a. Phone b. Text c. Facebook d. Blackberry Messenger (BBM) e. Twitter f. Skype g. Email h. Whatsapp i. Other (please specify): _______________________________
(Respondents were asked to select all that apply.)
5. Do you ever contact people you haven’t ever met before, who have or had cancer?
(Respondents were asked to select “yes” or “no”. If the latter was selected, they skipped question 6.)
6. If yes, how do you contact them? a. Phone b. Text c. Facebook d. Blackberry Messenger (BBM) e. Twitter f. Skype g. Email h. Whatsapp i. Other (please specify): _______________________________
(Respondents were asked to select all those that apply.)
7. How do you find out about your hospital and the treatments you are getting? a. Information from professionals b. Leaflets c. Books d. Websites e. Friends/family f. Other (please specify): _______________________________
(Respondents were asked to select all those that apply.)
8. Have you used the website of: a. Your local hospital b. UCLH c. The MacMillan Cancer Centre d. London Cancer e. Other (please specify): _______________________________
(Respondents were asked to select all those that apply.)
9. How do you try to find out about your cancer and what can be done about it? a. Information from professionals b. Leaflets c. Books d. Websites e. Friends/family f. Other (please specify): _______________________________
(Respondents were asked to select all those that apply.)
10. How important is digital communication to your life?
(Assessed on a 7-point Likert-style scale ranging from “Not at All” to “Essential”.)
11. These are some of the websites we have links to. Please tick any you have looked at and rate them out of 7 (see Box 2 for descriptions): a. www.londoncancer.org [31] j. Other (please specify): _______________________________
(Each rated using a 7-point Likert-style scale ranging from “Useless” to “Excellent”.)
In the future…
12. What would you like to have available? a. Virtual online groups to chat to other young people who have to deal with cancer? b. Counselling or psychological support online? c. Receive information about your clinical condition, treatments, or sources of support? d. Able to share personal clinical information with professionals online? e. Parents to have access to your online clinical information?
(Respondents were asked to select “yes” or “no”.)
13. Which professionals would you want to contact digitally, and how would you like to contact them?
(Respondents were asked fill in a table with two columns: “professionals I’d like to contact” and “I would want to contact them by”.)
14. What other services would be good to have online?
(Respondents filled in a white space answer box.)
15. Any other ideas or comments?
(Respondents filled in a free text box.)
|
Ethical approval
Statistical analysis
Results
General characteristics (Table 1)
Category | Parameter | Number | Percentage |
---|---|---|---|
Gender (n = 88) | Male | 49 | 55.7% |
Female | 35 | 39.8% | |
Prefer not to say | 4 | 4.5% | |
Missing data | 14 | 13.7% | |
Race (n = 88) | White | 45 | 51.1% |
Asian/Asian-British | 16 | 18.2% | |
Black/Black-British | 11 | 12.5% | |
Chinese | 1 | 1.1% | |
Mixed | 5 | 5.7% | |
Prefer not to say | 5 | 5.7% | |
Other | 5 | 5.7% | |
Missing data | 14 | 13.7% | |
Religion (n = 88) | Christian | 29 | 33.0% |
Atheist | 14 | 15.9% | |
Muslim | 9 | 10.2% | |
Hindu | 6 | 6.8% | |
Jewish | 2 | 2.3% | |
Other | 4 | 4.5% | |
Agnostic | 7 | 8.0% | |
Prefer not to say | 17 | 19.3% | |
Missing data | 14 | 13.7% |
Category | Parameter | Number | Percentage |
---|---|---|---|
What do you use to chat to friends and family? (n = 100) | Phone | 82 | 82.0% |
Text | 81 | 81.0% | |
Facebook | 76 | 76.0% | |
Whatsapp | 56 | 56.0% | |
Skype | 40 | 40.0% | |
Twitter | 36 | 36.0% | |
Email | 30 | 30.0% | |
BBM | 11 | 11.0% | |
None | 0 | 0.0% | |
Other | 5 | 5.0% | |
Missing data | 2 | 2.0% | |
What do you use to go online? (n = 100) | Laptop | 79 | 79.0% |
Smartphone | 72 | 72.0% | |
Tablet | 36 | 36.0% | |
PC | 30 | 30.0% | |
Games console | 18 | 18.0% | |
Other | 2 | 2.0% | |
None | 1 | 1.0% | |
Missing data | 2 | 2.0% | |
Do you keep in touch with people you have already met who have or had cancer? (n = 100) | No | 49 | 49.0% |
Yes | 51 | 51.0% | |
Missing data | 2 | 2.0% | |
If yes, how do you keep in touch? (n = 51) | Text | 35 | 68.6% |
Facebook | 25 | 49.0% | |
Phone | 20 | 39.2% | |
Whatsapp | 9 | 17.6% | |
Twitter | 7 | 13.7% | |
Email | 6 | 11.8% | |
Skype | 4 | 7.8% | |
Other | 4 | 7.8% | |
BBM | 1 | 2.0% | |
Missing data | 51 | 50.0% | |
Do you keep in touch with people you haven’t ever met before, who have or had cancer? (n = 100) | No | 88 | 88.0% |
Yes | 12 | 12.0% | |
Missing data | 2 | 2.0% | |
If yes, how do you contact them? (n = 10) | Text | 2 | 20.0% |
Facebook | 3 | 30.0% | |
Phone | 2 | 20.0% | |
Whatsapp | 0 | 0.0% | |
Twitter | 1 | 10.0% | |
Email | 1 | 10.0% | |
Skype | 1 | 10.0% | |
Other | 5 | 50.0% | |
BBM | 0 | 0.0% | |
Missing data | 92 | 90.2% | |
How do you find out about your hospital and the treatments you are getting? (n = 97) | Information from professionals | 86 | 88.7% |
Leaflets | 39 | 40.2% | |
Books | 6 | 6.2% | |
Websites | 34 | 35.1% | |
Friends/family | 18 | 18.6% | |
Other | 2 | 2.1% | |
Missing data | 5 | 4.9% | |
Have you used any of the following websites? (n = 97) | Your local hospital | 9 | 9.3% |
UCLH | 40 | 41.2% | |
The MacMillan Cancer Centre | 41 | 42.3% | |
London Cancer | 3 | 3.1% | |
Other | 2 | 2.1% | |
Missing data | 5 | 4.9% | |
How do you try to find out about your cancer and what can be done about it? (n = 93) | Information from professionals | 77 | 82.8% |
Leaflets | 41 | 44.1% | |
Books | 12 | 12.9% | |
Websites | 41 | 44.1% | |
Friends/family | 19 | 20.4% | |
Other | 5 | 5.4% | |
Missing data | 9 | 8.8% | |
In the future what would you like to have available? (n = 92) | Virtual online groups to chat to other young people who have to deal with cancer | 50 | 54.3% |
Counselling or psychological support online | 40 | 43.5% | |
To receive information about your clinical condition treatments, sources of support | 61 | 66.3% | |
To be able to share personal clinical information with professionals online | 45 | 48.9% | |
Parents to have access to your online clinical information | 43 | 46.7% | |
Missing data | 10 | 9.8% | |
Which professionals would you like to contact digitally and how? (n = 33) | Doctors | 14 | 42.4% |
Clinical Nurse Specialists/Nurses | 11 | 33.3% | |
Psychologists/counsellors | 3 | 9.1% | |
Social worker | 1 | 3.0% | |
Radiographer | 1 | 3.0% | |
None | 1 | 3.0% | |
Missing data | 69 | 67.6% | |
How would you like to contact the above individuals? (n = 33) | Email | 21 | 63.6% |
Chat/forums | 5 | 15.2% | |
Facebook | 1 | 3.0% | |
Skype | 1 | 3.0% | |
Text | 2 | 6.1% | |
Phone | 3 | 9.1% | |
Other | 2 | 6.1% | |
Missing data | 69 | 67.6% | |
How important is digital communication to your life (n = 93) | Essential (7/7) | 42 | 45.2% |
6.00 | 24 | 25.8% | |
5.00 | 15 | 16.1% | |
4.00 | 10 | 10.8% | |
3.00 | 2 | 2.2% | |
2.00 | 0 | 0.0% | |
Not at all (1/7) | 0 | 0.0% | |
Missing data | 9 | 8.8% |
Digital technology preferences (Table 2 and 3, Fig. 1)
Rank | Website | Median rating (on scale of 1—useless, to 7—excellent) |
---|---|---|
1 | 6.04 | |
2 | 5.9 | |
3 | 5.9 | |
4 | 5.27 | |
5 | 5.25 | |
6 | 5.25 | |
7 | 5.2 | |
8 | 4.57 | |
9 | 4.33 | |
10 | Other | 2 |
Missing data | 42/102 |
Preferences for future services (Table 2)
Subgroup comparison of responses from two patient age groups; from adolescents (13 to 18) and young adults (19 to 24) (Table 4)
Parameter | Number (13–18) | Percentage | Number (19–24) | Percentage |
p value |
---|---|---|---|---|---|
Virtual online groups to chat to other young people who have to deal with cancer | 20 | 45.5% | 26 | 65.0% | 0.115 |
Counselling or psychological support online | 14 | 31.8% | 23 | 57.5% | 0.032a
|
To receive information about your clinical condition, treatments, sources of support | 26 | 59.1% | 32 | 80.0% | 0.067 |
To be able to share personal clinical information with professionals online | 15 | 34.1% | 24 | 60.0% | 0.031a
|
Parents to have access to your online clinical information | 24 | 54.5% | 19 | 47.5% | 0.538 |