Using a cartoon questionnaire to improve consent process in children: a randomized controlled survey

doi:10.1038/s41390-020-01227-2

Randomized Controlled Trial

. 2021 Aug;90(2):411-418.

doi: 10.1038/s41390-020-01227-2. Epub 2020 Nov 17.

Using a cartoon questionnaire to improve consent process in children: a randomized controlled survey

Shanshan Qiu^#¹, Yang Xia^#¹, Feng Tian², Yanfang Yang³, Jijun Song⁴, Liqin Chen⁵, Hao Mei⁶, Fan Jiang⁷, Nan Bao¹, Shijian Liu⁸

Affiliations

¹ Department of Pediatric Neurosurgery, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China.
² Department of Pediatric Urinary Surgery, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China.
³ Department of Pediatric Urinary Surgery, Henan Children's Hospital Affiliated to Zhengzhou University, Henan, China.
⁴ Department of Clinical Laboratory, the Sixth People's Hospital Of Zhengzhou, Henan, China.
⁵ Department of Pediatric General Surgery, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China.
⁶ Department of Data Science, School of Population Health, University of Mississippi Medical Center, Jackson, MS, USA.
⁷ Department of Developmental and Behavioral Pediatrics, Shanghai Jiaotong University School of Medicine, Shanghai, China.
⁸ Pediatric Health Advocacy Institute, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China. liushijian@scmc.com.cn.

^# Contributed equally.

PMID: 33203966
DOI: 10.1038/s41390-020-01227-2

Randomized Controlled Trial

Using a cartoon questionnaire to improve consent process in children: a randomized controlled survey

Shanshan Qiu et al. Pediatr Res. 2021 Aug.

. 2021 Aug;90(2):411-418.

doi: 10.1038/s41390-020-01227-2. Epub 2020 Nov 17.

Authors

Shanshan Qiu^#¹, Yang Xia^#¹, Feng Tian², Yanfang Yang³, Jijun Song⁴, Liqin Chen⁵, Hao Mei⁶, Fan Jiang⁷, Nan Bao¹, Shijian Liu⁸

Affiliations

¹ Department of Pediatric Neurosurgery, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China.
² Department of Pediatric Urinary Surgery, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China.
³ Department of Pediatric Urinary Surgery, Henan Children's Hospital Affiliated to Zhengzhou University, Henan, China.
⁴ Department of Clinical Laboratory, the Sixth People's Hospital Of Zhengzhou, Henan, China.
⁵ Department of Pediatric General Surgery, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China.
⁶ Department of Data Science, School of Population Health, University of Mississippi Medical Center, Jackson, MS, USA.
⁷ Department of Developmental and Behavioral Pediatrics, Shanghai Jiaotong University School of Medicine, Shanghai, China.
⁸ Pediatric Health Advocacy Institute, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China. liushijian@scmc.com.cn.

^# Contributed equally.

PMID: 33203966
DOI: 10.1038/s41390-020-01227-2

Abstract

Objective: The aim of the study was to evaluate the effectiveness of an audio and animated cartoon questionnaire (AACQ) at improving consent process in child for biospecimen donation.

Methods: A multi-center randomized and controlled survey was performed at two pediatric hospitals in China from 2019 to 2020. Children aged from 7 to 18 years in the pediatric surgery wards were invited to investigate the participants' willingness and attitudes for donating biospecimens. A total of 264 children, including 119 in the AACQ group and 145 in the TQ group, and 67 parents of children were analyzed. A separate knowledge test was acquired in the questionnaires.

Results: Our findings showed that the response rate of the AACQ group (89.85%) was significantly higher than that of the TQ group (68.44%; p < 0.001). AACQ can improve the child's understanding, increase children's engagement in biospecimen donation, reduced the differences in selected characteristics affecting children understanding, and enhanced their risk awareness of donating biospecimens. We also found that increasing pain and privacy disclosure were the most popular concern among children for the refusal to donate biospecimens.

Conclusions: AACQ is an effective and standardized tool of content delivery to children from the surgical wards. Children who fully understood of biospecimen donation are suggested to participate in the consent signing.

Impact: Using audio and animated cartoon questionnaire is a more effective and standardized tool of content delivery to children. This study expanded the use of an animated cartoon to a children's survey. Audio and animated cartoon questionnaire (AACQ) can improve the child's understanding, increase children's engagement in biospecimen donation compared to text questionnaire (TQ) group, and enhanced their risk awareness of donating biospecimens. More AACQ should be used with children in the future to effectively deliver content to children and improve children's participation in the survey.

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References

1. Joly, Y., Dyke, S. O. M., Knoppers, B. M. & Pastinen, T. Are data sharing and privacy protection mutually exclusive? Cell 167, 1150–1154 (2016). - DOI
1. Hobbs, A., Starkbaum, J., Gottweis, U., Wichmann, H. E. & Gottweis, H. The privacy-reciprocity connection in biobanking: comparing German with UK strategies. Public Health Genomics 15, 272–284 (2012). - DOI
1. Pullman, D., Etchegary, H., Gallagher, K., Hodgkinson, K. & Street, C. Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions. Genet. Med. 14, 229–235 (2012). - DOI
1. Sanderson, S. C. et al. Public attitudes toward consent and data sharing in biobank research: a large multi-site experimental survey in the US. Am. J. Hum. Genet. 100, 414–427 (2017). - DOI
1. Yang, Y., Qin, Y., Chi, H., Li, A. H. & Li, Y. Management of data sharing of human genetic resources and its enlightenment to China. Zhongguo Yi Xue Ke Xue Yuan Xue Bao 41, 396–401 (2019).

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[1] Joly, Y., Dyke, S. O. M., Knoppers, B. M. & Pastinen, T. Are data sharing and privacy protection mutually exclusive? Cell 167, 1150–1154 (2016). - DOI

[2] Joly, Y., Dyke, S. O. M., Knoppers, B. M. & Pastinen, T. Are data sharing and privacy protection mutually exclusive? Cell 167, 1150–1154 (2016). - DOI

[3] Hobbs, A., Starkbaum, J., Gottweis, U., Wichmann, H. E. & Gottweis, H. The privacy-reciprocity connection in biobanking: comparing German with UK strategies. Public Health Genomics 15, 272–284 (2012). - DOI

[4] Hobbs, A., Starkbaum, J., Gottweis, U., Wichmann, H. E. & Gottweis, H. The privacy-reciprocity connection in biobanking: comparing German with UK strategies. Public Health Genomics 15, 272–284 (2012). - DOI

[5] Pullman, D., Etchegary, H., Gallagher, K., Hodgkinson, K. & Street, C. Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions. Genet. Med. 14, 229–235 (2012). - DOI

[6] Pullman, D., Etchegary, H., Gallagher, K., Hodgkinson, K. & Street, C. Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions. Genet. Med. 14, 229–235 (2012). - DOI

[7] Sanderson, S. C. et al. Public attitudes toward consent and data sharing in biobank research: a large multi-site experimental survey in the US. Am. J. Hum. Genet. 100, 414–427 (2017). - DOI

[8] Sanderson, S. C. et al. Public attitudes toward consent and data sharing in biobank research: a large multi-site experimental survey in the US. Am. J. Hum. Genet. 100, 414–427 (2017). - DOI

[9] Yang, Y., Qin, Y., Chi, H., Li, A. H. & Li, Y. Management of data sharing of human genetic resources and its enlightenment to China. Zhongguo Yi Xue Ke Xue Yuan Xue Bao 41, 396–401 (2019).

[10] Yang, Y., Qin, Y., Chi, H., Li, A. H. & Li, Y. Management of data sharing of human genetic resources and its enlightenment to China. Zhongguo Yi Xue Ke Xue Yuan Xue Bao 41, 396–401 (2019).

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Using a cartoon questionnaire to improve consent process in children: a randomized controlled survey

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Using a cartoon questionnaire to improve consent process in children: a randomized controlled survey

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