YouTube as a source of information on clinical trials for paediatric cancer

Figures & data

Table 1. Global quality scale.

1. Poor quality, poor flow

2. Generally poor quality

3. Moderate quality

4. Good quality, good flow

5. Excellent quality and excellent flow

Table 2. A modified version of DISCERN instrument (original in parenthesis when a change has been made).

1. Have explicit aims

2. Achieve its aims

3. Be relevant to patient, children and/or their caregivers (consumers)

4. Make sources of information explicit

5. Make date of information explicit

6. Be balanced and unbiased

7. List additional sources of information

8. Refer to ethical uncertainties regarding value of research and possible benefits to others (refer to areas of uncertainty)

9. Describe how the research is carried out (describe how treatment works)

10. Describe the potential benefits of research participation (describe the benefits of treatment)

11. Describe the potential risks of research participation (describe the risks of treatment)

12. Describe how research participation can affect treatment opportunities (what would happen without treatment)

13. Describe the effects of choosing participation on overall quality of life (effects of treatment)

14. Make it clear whether regular treatment will be continued if not participating (that there may be more than one possible treatment choice)

15. Make voluntariness explicit (provide support for shared decision-making)

16. A summary of responses to the preceding 15 questions

Figure 1. Screening process for clinical trials for paediatric cancer.

Table 3. Characteristics of YouTube videos related to clinical trials for paediatric cancer.

	Results
Descriptive data
Length of video in total, sec, min	13,643; 227
Length of each video, sec, (mean, range)	212; 341 (52–2318)
Year uploaded, n (range)	40 (2010–2019)
2010–2012 n (%)	8 (20)
2013–2015	11 (28)
2016–2019	20 (50)
Unknown	1 (2)
Number of views, n (mean; range)	84,804 (2120; 101–30,473)
Number of thumbs up, n (mean; range)	406 (10.1; 0–75)
Number of thumbs down, n (mean; range)	67 (1.6; 0–55)
Video content
Sources, n (%)
Research centre/hospital/foundation where professionals are speaking	19 (47)
Research centre/hospital/foundation, both testimonies from patient/caregiver and professionals	18 (45)
Other	3 (8)
Country of origin, n (%)
US	33 (83)
UK	6 (15)
Unknown	1 (2)
Discusses clinical trials, n (%)
Early trial phases, experimental	20 (50)
Clinical trials in general	15 (38)
Educational, all phases described systematically	5 (12)
Cognitive or affective style, n (%)
Affective	22 (55)
Cognitive	18 (45)
Global quality scale (GQS), n (%)
Excellent audio-visual quality and flow, score 5	22 (56)
Good audio-visual quality and flow, score 4	9 (22)
Moderate audio-visual quality and flow, score 3	9 (22)
Discern, n (%)
Excellent, minimal shortcomings, 75–61 points	0 (0)
Good, with no serious shortcomings, 60–46 points	8 (20)
Low, with serious shortcomings, 45–31 points	19 (48)
Not appropriate source of information, ≤ 30 points	13 (32)

Figure 2. Mean rating per question using the DISCERN tool on a scale from 1 to 5, with 5 being the maximum.