Factors influencing the provision of end-of-life care for adolescents and young adults with advanced cancer: a scoping review

Abstract

Background There is international recognition that cancer in young people is on the rise and that improvements in outcomes for young people lag well behind advances achieved for both children and older adults over the past 30 years. Cancer is the third leading cause of death in adolescents and young adults; however, little is known about how the end of life unfolds for those who die of the progressive disease. Objective This scoping review sought to locate and describe literature relating to end of life care for adolescents and young adults with cancer. Inclusion criteria Types of participants We considered studies that focused on adolescents and young adults aged 10-24 with advanced cancer at the end stage of life and those who care for them. Types of intervention(s)/ phenomena of interest We considered studies that focused on end-of-life care, including service provision, practices and interventions, and the experiences and perceptions of adolescents and young adults with advanced cancer and their health professionals and family carers. Types of studies We included all quantitative and qualitative research designs. Types of outcome The purpose of the review was to map existing literature on this topic and to identify what outcomes were being measured by current research. Search strategy A three-step search strategy was used in this review. Methodological quality This review is a scoping review to provide a broader picture of existing literature on this topic. Hence, assessment of methodological quality was not performed to exclude studies based on quality scores. Data collection Data was extracted using extraction tools from the Joanna Briggs Institute Meta-Analysis of Statistics Assessment and Review Instruments (JBI-MAStARI) and the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). Data synthesis The findings are presented in a narrative form including tables and figures to aid in data presentation where appropriate. Results Twenty studies published in English were included in this review. Research designs were mainly descriptive and retrospective using data from case notes or medical records (n=8) and focus groups (n=4). There was a single randomized controlled trial, four cross sectional surveys, two prospective cohort studies and one that used data from three studies to develop guidelines. Conclusion Relatively little research was located relating to experiences and perceptions of adolescents and young adults and their carers in relation to decision making and advanced care planning. The main focus of the research was medical record review and interviews with bereaved parents. Implications for practice The overall focus on retrospective data and the heterogeneous and descriptive nature of the studies limits the development of recommendations for practice. Encouraging adolescents and young adults to participate in decisions about their end of life care through the use of advance care planning documents, introduced at a suitable stage of their illness, appears to be an appropriate way forward. Implications for research Future research should focus specifically on adolescents and young adults at the end of life and consider both their perspective and that of their carers, particularly with regard to decision-making. Research should also focus on factors influencing appropriate place of death.