Advance care planning for adolescents with cancer and their parents: study protocol of the BOOST pACP multi-centre randomised controlled trial and process evaluation

Abstract

Background Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for treatment, there is a lack of structured multicomponent interventions to improve parent-adolescent communication on different ACP themes including those not limited to end-of-life care. The aim of this study is to evaluate the effectiveness and implementation, context and mechanisms of impact of a novel ACP program in paediatric oncology. Methods We will conduct a multi-centre parallel-group randomised controlled superiority trial with embedded mixed-methods process evaluation in Flanders, Belgium. Adolescents aged 10–18 who have cancer, and their parent(s) will be recruited via all four university hospitals in Flanders, Belgium, and support groups. Families will be randomised to receive care as usual or the multicomponent BOOST pACP program, consisting of three conversation sessions between an external facilitator and the adolescent and parent(s). The primary endpoint is improved parent-adolescent communication from the perspective of the adolescent. Secondary endpoints are adolescents’ and parents’ attitudes, self-efficacy, intention and behaviour regarding talking about ACP themes with each other, parents’ perspective of shared decision making in the last clinical encounter, and the paediatric oncologist’s intention and behaviour regarding talking about ACP themes with the family. Measurements will be performed at baseline, at 3 months and at 7 months using structured self-reported questionnaires. We will perform a process evaluation in the intervention group, with measurement throughout and post-intervention, using structured diaries filled out by the facilitators, interviews with facilitators, interviews with involved paediatric oncology teams, and audio-recordings of the BOOST pACP conversations. Discussion The BOOST pACP program has been developed to stimulate conversations on ACP themes between parent(s) and the adolescents, simultaneously lowering the threshold to discuss similar themes with healthcare professionals, initiating a process of normalization and integration of ACP in standard care. This combined outcome and process evaluation aims to contribute to building the necessary evidence to improve ACP in paediatric oncology. Trial registration The study is registered at ISRCTN, ISRCTN33228289. Registration date: January 22, 2021.

Predictive Nursing Versus Routine Nursing on Health Status, Cancer-related Fatigue and Psychological State of Patients with Pancreatic Cancer Undergoing Chemotherapy

“…In addition, the uncertainty of the disease and survival leads to a loss of awareness of the value and meaning of life, and in severe cases may even lead to depression, irritability and other psychiatric disorders [16,17] . It has been pointed out that patients receiving postoperative chemotherapy need psychological support, which can greatly enhance patients' enthusiasm for treatment and treatment confidence.…”

The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility

“…In the next steps, the intervention will be tested in a multi-centre parallel-group randomised controlled trial, with an embedded mixed-methods process evaluation in paediatric oncology in Belgium [30]. This will result in more knowledge of the effectiveness of improving ACP communication between adolescents, parents and paediatric oncologists and on other potentially positive or negative effects.…”

“…between 10-18 years old with any type of cancer at any stage, parents, and paediatric oncologists [30].…”

Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences

“…[1][2][3][4] Key elements of pACP in this population [1][2][3][4][5][6] include (1) giving adolescents a voice in their own end-of-life care, (2) initiating early pACP conversations to close gaps in understanding, 7 (3) documenting advance directives in the electronic health record (EHR), and (4) sharing pACP conversations with the treating clinicians to support communication before a medical crisis. 8 Various models of pACP for adolescents with a serious illness are being developed, [9][10][11][12][13] along with tools to guide conversations. [14][15][16] Although ongoing conversations are recommended, 17,18 optimal timing has not been empirically demonstrated.…”