Clinical trials: the viewpoint of children

Cherrill, Janine; Hudson, Heather; Cocking, Caroline; Unsworth, Vanessa; Franck, Linda S.; McIntyre, John S.; Choonara, Imti

doi:10.1136/adc.2006.114207

Cited by 12 publications

(10 citation statements)

References 3 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Our previous research involved children attending clinics, who were keen to participate in the discussion by consenting for research 4. Our involvement of children in a secondary school suggests they are happy to take part in discussions about health and treatments and that society should try and create more opportunities for young people to be involved in decision-making about issues that affect them.…”

Section: Discussionmentioning

confidence: 99%

“…Previous research has shown that children are capable of understanding medicine-related topics 2 3. We have previously studied the viewpoint of children attending hospitals as outpatients and found many were able to understand some of the principles that arise in clinical trials 4. We therefore wished to determine whether the viewpoint of children with a chronic illness in relation to clinical trials was different to that of healthy children.…”

mentioning

confidence: 99%

See 1 more Smart Citation

Clinical trials: the viewpoint of children with a chronic illness compared with healthy children

Cherrill

Hudson

Cocking

et al. 2009

Archives of Disease in Childhood

Self Cite

View full text Add to dashboard Cite

The views of over 200 children (11-16 years old, who were either healthy or attending paediatric medical clinics with a chronic illness) on issues relating to paediatric clinical trials were determined by a questionnaire. Children with a chronic illness had a better understanding of the concept of dosing of medicines (40% vs 23%) and placebo (34% vs 20%). They were more likely to support children's involvement in clinical trials (51% vs 37%). The altruistic nature of children in both groups was similar. It was of concern, however, that 57-63% children would participate as healthy volunteers in a cancer drug trial. Both groups were able to differentiate between the different types of illnesses where it is appropriate to study medicines in children (86-89% for illness where there is no treatment; 34-40% for 'me-too' drugs). Young people should be given more opportunities to be involved in decision-making regarding clinical trials of medicines.

show abstract

Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

Clinical trials: the viewpoint of children with a chronic illness compared with healthy children

Cherrill

Hudson

Cocking

et al. 2009

Archives of Disease in Childhood

Self Cite

View full text Add to dashboard Cite

show abstract

“…In considering the future involvement of patients in clinical trials, it is important that we consider the experiences of families who have recently been involved in optional research studies and investigate the positive and negative experiences of participation. Previous work in this area includes studies assessing the views of parents on consent and participation in therapeutic trials for cancer and other illnesses, but very few studies have been published focusing on the views of both patients and parents of participation in nontherapeutic trials purely in an oncology setting.…”

Section: Introductionmentioning

confidence: 99%

Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK

Errington

Malik

Evans

et al. 2016

Pediatric Blood & Cancer

View full text Add to dashboard Cite

BackgroundWhile the majority of childhood cancer clinical trials are treatment related, additional optional research investigations may be carried out that do not directly impact on treatment. It is essential that these studies are conducted ethically and that the experiences of families participating in these studies are as positive as possible.MethodsA questionnaire study was carried out to investigate the key factors that influence why families choose to participate in optional nontherapeutic research studies, the level of understanding of the trials involved, and the experiences of participation.ResultsA total of 100 participants from six UK centers were studied; 77 parents, 10 patients >16 years, and 13 patients aged 8–15 years. Ninety‐seven percent of parents and 90% of patients felt that information provided prior to study consent was of the right length, with 52% of parents and 65% of patients fully understanding the information provided. Seventy‐four percent of parents participated in research studies in order to “do something important”, while 74% of patients participated “to help medical staff”. Encouragingly, <5% of participants felt that their clinical care would be negatively affected if they did not participate. Positive aspects of participation included a perception of increased attention from medical staff. Negative aspects included spending longer periods in hospital and the requirement for additional blood samples. Ninety‐six percent of parents and 87% of patients would participate in future studies.ConclusionsThe study provides an insight into the views of childhood cancer patients and their parents participating in nontherapeutic clinical research studies. Overwhelmingly, the findings suggest that participation is seen as a positive experience.

show abstract

“…Some show that children, when asked, are positive about participation in research that is not directly beneficial to themselves (Wendler, Abdoler, Wiener, & Grady, 2012; Wendler & Jenkins, 2008). Others have examined factors influencing decisions about whether to participate—providing children and adolescents with a number of research scenarios (Cherill et al, 2007; Mukattash, Trew, Hawwa, & McElnay, 2012; Varma, Jenkins, & Wendler, 2008). Others have studied factors related to informed consent and children’s understanding of research information (Bernhardt, Tambor, Fraser, Wissow, & Geller, 2003; Brody, Scherer, AnNett, & Pearson-Bish, 2003; Chappuy, Doz, Blanche, Gentet, & Tréluyer, 2008).…”

mentioning

confidence: 99%

Children’s Views on Long-Term Screening for Type 1 Diabetes

Swartling

Helgesson

Ludvigsson

et al. 2014

Journal of Empirical Research on Human Research Ethics

View full text Add to dashboard Cite

There are an increasing number of medical research studies involving children, including many long-term birth cohort studies. Involving children raises many issues, and little is known about children’s own views. This study explored children’s views (N = 5,851) on participation in a long-term screening study for type 1 diabetes. The results show that children 10 to 13 years of age have in general a positive attitude to pediatric research and emphasized trust in researchers. The children stressed the importance to receive information and to be involved in decisions. The children also reported feeling concerned about blood sampling and disease risk. Researchers involved in long-term pediatric research need to address these issues to promote involvement and decrease worry.

show abstract

Clinical trials: the viewpoint of children

Cited by 12 publications

References 3 publications

Clinical trials: the viewpoint of children with a chronic illness compared with healthy children

Clinical trials: the viewpoint of children with a chronic illness compared with healthy children

Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK

Children’s Views on Long-Term Screening for Type 1 Diabetes

Contact Info

Product

Resources

About