What are young people’s views about Clinical Trials?

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Background

Relatively little work has been done to investigate the views of children and young people about research or Randomised Controlled Trials (RCTs). However, there needs to be more education in general about the importance of clinical trials. The viewpoint of children in relation to clinical trials was recently investigated by Choonara et al who explored the opinions of 200 children, healthy and those with a chronic conditions, between the ages of 11 and 16. When this paper was subsequently reviewed by the West Midlands MCRN Young Person’s Group (YPAG), many young people thought it may have been more appropriate for Choonara et al to explore motives behind young people’s answers in this study. Young people also thought it was difficult to ask children and adolescents about some aspects of clinical trials, especially when this population may not have any prior knowledge about how trials are regulated and governed, as well as the essential need for trials.

Aims

Following review of this paper a pilot educational day was organised for young people aged 13 and 14 years old by the West Midlands YPAG and the Welcome Clinical Research Facility at Birmingham Children’s Hospital. The aim of this day was to educate young people about clinical trials and drug development & gather information regarding Young people’s perceptions on clinical trials.

Recruitment

Young people aged 13 and 14 years from two Birmingham inner city schools attended the day.  All young people would be studying biology in the forthcoming academic year.

Methodologies

Development of Educational workshops: The facilitators for this project have previously piloted educational programs about clinical trials in secondary schools within the West Midlands (6). A focus group with young people to explore what sort of activities could be employed to aid an educational session about Clinical Trials was also carried out prior to this day. The facilitators alongside CRN: Children’s Young Person’s Advisory Groups designed five activities that would take place over the course of one hour during the open day. These activities explored different aspects of Clinical Trials.

Results

Young People’s views of Clinical Trials:  When probing young people’s definitions of clinical research, it materialised that after education young people were able to formulate enhanced definitions of clinical trials.  One marked difference between responses before and after educational activities was that responses were more concrete in terms of answering yes or no to taking part in RCTs and the reasons why.

Strengths of this qualitative approach was that it unquestionably allowed young people to be less restricted in  their reasoning behind answers for hypothetical participation in clinical trials or not. The session also allowed exploration of how activities informing younger populations about RCTs could be developed.

Future studies: A future project may be useful to repeat the methodology more vigorously. A follow up project could compare the views of children and young people with chronic conditions alongside healthy young people. This project did provide a platform on which to build a future study.