School of Clinical Medicine Behavioural Sciences Unit

Clinical trial decision aid for families

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When a child is diagnosed with cancer, many families are faced with the decision whether to participate in a clinical trial or not. This can be a difficult decision for families, especially during a time of high distress and information overload.

The Delta study aimed to develop a decision aid to help families understand what clinical trials are and make an enrolment decision that aligns to what is most important to them.  

Delta Resource

Delta has been developed to help parents decide whether they want to enrol their child in a clinical trial, and to also support young people with this decision. Delta has been developed in partnership with an extensive team of oncologists, psychologist, nurses, researchers and families. All quotes used in this booklet have been used with the parents’/adolescents’ consent.

You can download both versions of the Delta booklet for free from the below links. 
Delta for Parents
Delta for Young People with Cancer

We have also developed a short animation to help explain to parents and young people what clinical trials are. We hope that the animation will encourage families to think more about what the clinical trial means for them, and help to ask questions. The animation is targeted at young people from 8+ years old. 

Publications

  • Robertson, E.G., Cohen, J., Signorelli, C., Grant, D.M., Fardell, J.E., & Wakefield, C.E. (2019). What instruments should we use to assess paediatric decision-making interventions? A narrative review. Journal of Child Health Care, August 26. https://doi.org/10.1177/1367493519869717
  • Robertson, E.G., Wakefield, C.E., Cohn, R.J., Battisti, R.A., Donoghoe, M.W., Ziegler, D.S., Fardell, J.E., Mitchell, R., & O'Brien, T.A. (2019). Piloting a parent and patient decision aid to support clinical trial decision making in childhood cancer. Psycho-Oncology, 28(7), 1520-1529. https://doi.org/10.1002/pon.5109
  • Robertson, E.G., Wakefield, C.E., Shaw, J., Darlington, A., McGill, B.C., Cohn, R.J., & Fardell, J.E. (2019). Decision-making in childhood cancer: Parents' and adolescents' views and perceptions. Supportive Care in Cancer, 27(11), 4331-4340. https://doi.org/10.1007/s00520-019-04728-2
  • Robertson, E.G., Mitchell, R., Wakefield, C.E., Lewis, P., Cousens, N., Marshall, G.M., Russell, S.J., Ziegler, D.S., Anazodo, A.C., Trahair, T.N., Barbaric, D., Cohn, R.J., & Alvaro, F. (2018). Enrolment in paediatric oncology early-phase clinical trials: The healthcare professionals’ perspective. Journal of Paediatrics and Child Health, 55(5), 561-566. https://doi.org/10.1111/jpc.14248
  • Robertson, E.G., Wakefield, C.E., Cohn, R.J., O’Brien, T.A., Ziegler, D.S., & Fardell, J.E. (2018). The development of Delta: Using Agile to develop a decision aid for pediatric oncology clinical trial enrollment. JMIR Research Protocols, 7(5), e119. https://doi.org/10.2196/resprot.9258
  • Robertson, E.G., Wakefield, C.E., Signorelli, C., Cohn, R.J., Patenaude, A., Foster, C., Pettit, T., & Fardell, J.E. (2018). Strategies to facilitate shared decision-making about pediatric oncology clinical trial enrollment: A systematic review. Patient Education and Counseling, 101(7), 1157-1174. https://doi.org/10.1016/j.pec.2018.02.001

Contact

Dr Eden Robertson
eden.robertson@unsw.edu.au