title: Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK.
abstract: While 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.
  
  
  
  A 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.
  
  
  
  A 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.
  
  
  
  The 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.
authors.affiliation: Northern Institute for Cancer Research, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Julie
authors.initials: J
authors.lastname: Errington
authors.affiliation: Northern Institute for Cancer Research, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Ghada
authors.initials: G
authors.lastname: Malik
authors.affiliation: Pediatric Oncology and Haematology, Leeds General Infirmary, Leeds, UK.
authors.forename: Julie
authors.initials: J
authors.lastname: Evans
authors.affiliation: Pediatric Oncology and Haematology, Leeds General Infirmary, Leeds, UK.
authors.forename: Jenny
authors.initials: J
authors.lastname: Baston
authors.affiliation: Clinical Trials Unit, Great North Children's Hospital, Newcastle upon Tyne, UK.
authors.forename: Annie
authors.initials: A
authors.lastname: Parry
authors.affiliation: Clinical Trials Unit, Great North Children's Hospital, Newcastle upon Tyne, UK.
authors.forename: Lisa
authors.initials: L
authors.lastname: Price
authors.affiliation: Clinical Trials Unit, Great North Children's Hospital, Newcastle upon Tyne, UK.
authors.forename: Hina
authors.initials: H
authors.lastname: Johnstone
authors.affiliation: Institute for Child Life and Health, Bristol University, Bristol, UK.
authors.forename: Selena
authors.initials: S
authors.lastname: Peters
authors.affiliation: Institute for Child Life and Health, Bristol University, Bristol, UK.
authors.forename: Victoria
authors.initials: V
authors.lastname: Oram
authors.affiliation: Great Ormond Street Hospital, London, UK.
authors.forename: Karen
authors.initials: K
authors.lastname: Howe
authors.affiliation: Royal Manchester Children's Hospital, Manchester, UK.
authors.forename: Emma
authors.initials: E
authors.lastname: Whiteley
authors.affiliation: Addenbrooke's Hospital, Cambridge, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Tunnacliffe
authors.affiliation: Northern Institute for Cancer Research, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Gareth J
authors.initials: GJ
authors.lastname: Veal
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002986:Clinical Trials as Topic; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms; D010290:Parents; D010353:Patient Education as Topic; D010358:Patient Participation; D011795:Surveys and Questionnaires; D006113:United Kingdom
keywords: clinical trials; parents; patient experiences; pediatrics; research