For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals’ capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.
Bibliographical noteThis is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Ursula Sansom-Daly received an AYA Global Accord Psycho-Oncology Research Acceleration Grant numbered RG180972 from the Adolescent and Young Adult Cancer Global Accord (a partnership between Teen Cancer America [https://teencanceramerica.org/], Teenage Cancer Trust [https://www.teenagecancertrust.org/] and Canteen [https://www.canteen.org.au/]). The funders will not have a role in study design, data collection and analysis, decision to publish or preparation of the manuscript. Ursula Sansom-Daly is also supported by an Early Career Fellowship from the Cancer Institute of New South Wales (ID: 2020/ECF1163) and an Early Career Fellowship from the National Health and Medical Research Council of Australia (APP2008300). Lori Wiener is supported, in part, by the Intramural Program of the National Cancer Institutes, Center for Cancer Research. Dr. Rosenberg has received grants for unrelated work from the National Institutes of Health, the American Cancer Society, Arthur Vining Davis Foundations, Cambia Health Solutions, Conquer Cancer Foundation of ASCO, CureSearch for Children’s Cancer, the National Palliative Care Research Center, and the Seattle Children’s Research Institute. The opinions herein represent those of the authors and not necessarily those of their institutions or funders. Claire Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP2008300). The Behavioural Sciences Unit is proudly supported by the Kids with Cancer Foundation, by the Kids Cancer Alliance, as well as a Cancer Council New South Wales Program Grant (PG16-02) with the support of the Estate of the Late Harry McPaul. There was no additional external funding received for this study.
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