Factors influencing the provision of End of Life care for adolescents and young adults with advanced cancer: a scoping review protocol

Review question/objectives The objective of this review is to locate and describe literature relating to EoL care provision to adolescents and young adults with cancer. The specific areas of investigation will include: Care service provision in adolescents and young adults with cancer during the EoL phase of care Experiences and perceptions of adolescents and young adults with cancer during the EoL phase of care Experience and perceptions of the health professionals and family members involved in their care. Practices/interventions used with adolescents and young adults with cancer during the EoL phase of care. Background This review will scope the literature relating to the provision of end of life care in adolescents and young adults with advanced cancer. It is estimated that there were around 173,000 cases of cancer diagnosed in adolescents and young adults(15-24 years) worldwide in 2008.1 In the same time period for the 27 countries of the European Union there were 14,700 new cases.1 In the UK in 2008-2010, an average of 2,214 adolescents and young adults (15-24 years) were diagnosed with cancer.1 The incidence rates of all cancers for this population have been shown to be steadily increasing since the 1990s and 10-40% of adolescents and young adults (15-24 years) diagnosed with cancer, will progress to an incurable disease2 with an estimated 86,000 deaths worldwide being reported in 2008.1 In Europe this figure was estimated to be 2,500.1 In 2008-2010, an average of 313 teenagers and young adults per year in the UK died from cancer.3 There is international recognition that not only is cancer in young people on the rise, but that improvements in outcomes of young people lag well behind advances achieved for both children and older adults in the past 30 years.4 Cohen-Gogo et al (2011) note that cancer is the third leading cause of death in adolescents and young adults.5 However little is known about how end-of-life unfolds for those who die of progressive disease. Three interchangeable terms are often used to refer to End of Life (EoL) care which have distinct but overlapping meanings; hospice, palliative care and EoL care.6 Hospice is defined as “a program of care that supports the patients and family through the dying process and the surviving family members through bereavement”.7p164. The World Health Organisation define palliative care as: “The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social and physical problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families” 8 p.11. Similarly the goals of EoL care are described as ‘preventing and managing symptoms and assisting the dying child or adolescent and his family members in finding comfort and meaning during this phase of care.6 p.126. Grinyer and Barbarchild (2011) suggest that end of life care is used to describe the care that focuses on preparation for an anticipated death and should promote clear and culturally sensitive communication to help patients and families understand the diagnosis, prognosis and treatment options available, including pain control and support systems for patients and their families which includes psychological and spiritual care.9 Whilst a diagnosis of cancer may be considered traumatic and life-changing at any age, in adolescents and young adults it may have extra significance as it occurs during a critical and unique phase of the human life course.10 The threats associated with advanced cancer in young people can be expected to provoke strong emotions and prove challenging for all involved. The essential feature of effective and appropriate EoL10 care is a relevant concern for those close to the patient, as well as those providing the service. Palliative care for adolescents needs to take into account the normal physical and psychological changes associated with adolescence, including attainment of independence, social skills, peer acceptance and self-image building.2 In the article entitled “Improving Outcomes Guidance for Children and Young People” the age range of adolescents is defined as 15-24 years,11 however some studies describe children from the age of 10 years as adolescents.12, 13 Schrivers and Meijnders (2006) further define adolescence by the appearance of secondary sex characteristics and terminating with the cessation of somatic growth.2 The World Health Organisation (2001) refers to individuals aged 10-19 years as adolescents and those aged 15-24 years as youth.14 Thomas et al (2006) note that in contrast to physical maturation, psychosocial maturation is highly variable but involves an increasing capacity for abstract thought enabling the realisation of concepts that lie outside of one's immediate experience such as death.4 For the purpose of this scoping review an adolescent and young adult will be defined as being from 10 to 24 years. An overview of research into EoL care for paediatric patients with cancer noted that substantial research gaps exist relating to the experiences of dying children and adolescents and their bereaved survivors, with the studies that have been conducted using retrospective, descriptive or pilot intervention designs and conducted in single institutional settings with small numbers of patients and omitting the perspective of the dying child.6 The participation rate of adolescents and young adults in Canada and the United States has been shown to be considerably lower than children and older adults, with many aspects of the adolescents and young adults population being understudied.15 A search of the Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects (DARE), Joanna Briggs Institute (JBI) Library of Systematic Reviews and PubMed clinical queries identified that there were no existing systematic reviews addressing this topic, and only one related systematic review protocol which focused on children as opposed to adolescents and young adults.16 However, there has been a rapid expansion in interest around the needs of young people with cancer in recent years. Multi-professional groups such as Teenagers and Young Adults with Cancer (TYAC) (www.tyac.org.uk) have lobbied for greater awareness and members of the project team have been closely involved in this group and its activities. There has also been a rise in publications on the needs of this age group, including concerns about lack of clinical trials,17 the impact of adolescents and young adult cancer on parents and families,18 the place of death of young adults with cancer19 and the nature of specialist teenage cancer units.20 Despite the unique nature of this age group's EoL support needs, there is a lack of empirical evidence currently available which supports the need for this scoping review. This scoping review will be informed by the work of Arksey and O'Malley (2005) who suggest a six stage methodological framework for conducting scoping reviews which includes: identifying the research question, searching for relevant studies, selecting studies, charting data, collating, summarising and reporting the results, and consulting with stakeholders to inform or validate study findings.21

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