Eden G Robertson1, Claire E Wakefield2, Christina Signorelli2, Richard J Cohn2, Andrea Patenaude3, Claire Foster4, Tristan Pettit5, Joanna E Fardell2. 1. Kids Cancer Centre, Sydney Children's Hospital, Randwick, Australia; Discipline of Paediatrics, School of Women's and Children's Health, UNSW Sydney, Kensington, Australia. Electronic address: eden.robertson@unsw.edu.au. 2. Kids Cancer Centre, Sydney Children's Hospital, Randwick, Australia; Discipline of Paediatrics, School of Women's and Children's Health, UNSW Sydney, Kensington, Australia. 3. Dana-Farber Cancer Institute, Harvard Medical School, Boston, USA. 4. Faculty of Health Sciences, University of Southampton, Southampton, UK. 5. Children's Haematology Oncology Centre, Christchurch Hospital, Christchurch, New Zealand.
Abstract
OBJECTIVE: We conducted a systematic review to identify the strategies that have been recommended in the literature to facilitate shared decision-making regarding enrolment in pediatric oncology clinical trials. METHODS: We searched seven databases for peer-reviewed literature, published 1990-2017. Of 924 articles identified, 17 studies were eligible for the review. We assessed study quality using the 'Mixed-Methods Appraisal Tool'. We coded the results and discussions of papers line-by-line using nVivo software. We categorized strategies thematically. RESULTS: Five main themes emerged: 1) decision-making as a process, 2) individuality of the process; 3) information provision, 4) the role of communication, or 5) decision and psychosocial support. Families should have adequate time to make a decision. HCPs should elicit parents' and patients' preferences for level of information and decision involvement. Information should be clear and provided in multiple modalities. Articles also recommended providing training for healthcare professionals and access to psychosocial support for families. CONCLUSION: High quality, individually-tailored information, open communication and psychosocial support appear vital in supporting decision-making regarding enrollment in clinical trials. These data will usefully inform future decision-making interventions/tools to support families making clinical trial decisions. PRACTICE IMPLICATIONS: A solid evidence-base for effective strategies which facilitate shared decision-making is needed.
OBJECTIVE: We conducted a systematic review to identify the strategies that have been recommended in the literature to facilitate shared decision-making regarding enrolment in pediatric oncology clinical trials. METHODS: We searched seven databases for peer-reviewed literature, published 1990-2017. Of 924 articles identified, 17 studies were eligible for the review. We assessed study quality using the 'Mixed-Methods Appraisal Tool'. We coded the results and discussions of papers line-by-line using nVivo software. We categorized strategies thematically. RESULTS: Five main themes emerged: 1) decision-making as a process, 2) individuality of the process; 3) information provision, 4) the role of communication, or 5) decision and psychosocial support. Families should have adequate time to make a decision. HCPs should elicit parents' and patients' preferences for level of information and decision involvement. Information should be clear and provided in multiple modalities. Articles also recommended providing training for healthcare professionals and access to psychosocial support for families. CONCLUSION: High quality, individually-tailored information, open communication and psychosocial support appear vital in supporting decision-making regarding enrollment in clinical trials. These data will usefully inform future decision-making interventions/tools to support families making clinical trial decisions. PRACTICE IMPLICATIONS: A solid evidence-base for effective strategies which facilitate shared decision-making is needed.
Authors: Eden G Robertson; Claire E Wakefield; Joanne Shaw; Anne-Sophie Darlington; Brittany C McGill; Richard J Cohn; Joanna E Fardell Journal: Support Care Cancer Date: 2019-03-18 Impact factor: 3.603
Authors: Bryan A Sisk; Kieandra Harvey; Annie B Friedrich; Alison L Antes; Lauren H Yaeger; Jennifer W Mack; James M DuBois Journal: Pediatr Blood Cancer Date: 2021-10-18 Impact factor: 3.167
Authors: Eden G Robertson; Claire E Wakefield; Maria Tsoli; Stewart J Kellie; Frank Alvaro; Andrew J Gifford; Martin A Weber; Michael Rodriguez; Maria Kirby; David S Ziegler Journal: Neurooncol Adv Date: 2021-08-25
Authors: Ruth I Hart; David A Cameron; Fiona J Cowie; Jeni Harden; Nicholas B Heaney; David Rankin; Angela B Jesudason; Julia Lawton Journal: BMC Health Serv Res Date: 2020-01-08 Impact factor: 2.655
Authors: Eden G Robertson; Claire E Wakefield; Richard J Cohn; Tracey O'Brien; David S Ziegler; Joanna E Fardell Journal: JMIR Res Protoc Date: 2018-05-04