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• To appreciate the importance of a successful transition from children’s to adult services for young adults who had childhood cancer
• To identify best transition practice for young adults who had childhood cancer
• To count towards revalidation as part of your 35 hours of CPD, or you may wish to write a reflective account (UK readers)
• To contribute towards your professional development and local registration renewal requirements (non-UK readers)
This article discusses the importance of a successful transition from children’s to adult services for young adults who had childhood cancer. It considers the role of nurses in children’s and adult services in supporting young adults to adequately prepare for the transition to adult services. Historically, the responsibility has been with children’s services to prepare young adults to transition to adult services; however, a joint approach between children’s and adult service providers is now recommended. A well-organised, person-centred, transition plan commenced early can contribute to a young adult’s successful transition to adult services.
Cancer Nursing Practice. doi: 10.7748/cnp.2021.e1808
Peer reviewThis article has been subject to external double-blind peer review and checked for plagiarism using automated software
Correspondence Conflict of interestNone declared
Kerr H (2021) Best practice in the transition to adult services for young adults who had childhood cancer. Cancer Nursing Practice. doi: 10.7748/cnp.2021.e1808
AcknowledgementThe author would like to thank Kerrie Sweeney, Teenage Cancer Trust teenage and young adult clinical nurse specialist, Northern Health and Social Care Trust, Northern Ireland, for providing support and feedback on the drafts of the article
Published online: 13 December 2021
The aim of this article is to discuss best practice in a successful transition to adult services for young adults who had childhood cancer. After reading this article and completing the time out activities you should be able to:
• Define the concept of transition to adult services.
• Outline the rationale for supporting young adults who had childhood cancer to successfully transition to adult services.
• Identify best practice regarding a successful transition to adult services.
• Understand the responsibilities of children’s and adult services in supporting transition to adult services.
• Consider how to develop your role in supporting young adults who had childhood cancer to transition to adult services.
• Young adults who had childhood cancer should be aware of the rationale for engaging with adult services to support a successful transition
• Supporting young adults to transfer to adult services is the responsibility of children’s and adult services
• The key to a successful transition to adult services is preparation of young adults, their parents and/or carers, children’s services and adult services
• A person-centred approach will support young adults to develop their autonomy to engage in monitoring for potential late effects of treatment
Cancer is rare in children, adolescents and young adults (Public Health England (PHE) 2021), but every year an estimated 400,000 children globally are diagnosed with the disease (World Health Organization (WHO) 2021). In the UK, approximately 1,800 children were diagnosed with cancer between 2016 and 2018 (Cancer Research UK 2021). Leukaemias, lymphomas, brain and other central nervous system and intracranial tumours accounted for around two thirds of all cancers diagnosed in children in the UK between 1997 and 2016 (Cancer Research UK 2021).
The treatment of childhood cancer is a success of modern medicine, with effective therapies developed for previously untreatable diseases (Winther et al 2015). Consequently, survival for individuals who had childhood cancer has increased significantly over the past few decades (Gatta et al 2014). In the UK, the five-year survival rate increased from 77% for children under 15 years of age who were diagnosed with cancer between 1997 and 2001 to 84% for those diagnosed between 2012 and 2016. For those aged between 15 years and 24 years, the five-year survival rate increased from 79% to 87% in the same two periods (PHE 2021). However, less than 30% of children diagnosed with cancer in many low-income and middle-income countries survive, whereas children in high-income countries have an 80% chance of cure (WHO 2021). The WHO (2021) has set a target of at least 60% survival for childhood cancer globally by 2030.
Despite being cured of their cancer, individuals may experience a range of adverse long-term health consequences (Robison and Hudson 2014, Bhakta et al 2017), which may not emerge until adulthood (Oeffinger et al 2006). For example, they are at risk of early mortality and increased morbidity, so they require surveillance for late effects of treatment (Shea et al 2019). Late effects may affect various organ systems, as well as an individual’s psychosocial, behavioural and neurocognitive functioning (Shea et al 2019). Oeffinger et al (2006) reported that 62% of survivors of childhood cancer will have at least one chronic condition, with 28% experiencing a severe or life-threatening condition. Survivors are also at risk of subsequent malignancies, making the burden of childhood cancer substantial (Bhakta et al 2017).
Improvements in survival mean that 80% of children and young adults who had childhood cancer now live into adulthood (Noone et al 2018), resulting in an increasing cohort who transfer to adult services. These young adults will continue to need follow-up care for screening of late effects of treatment, and education on lifestyle modifications to mitigate potential late effects of treatment (Shea et al 2019). Ongoing support is required in adulthood because one in five survivors of childhood cancer have concerns about relapse or the development of a second tumour and approximately 40% have concerns about late effects, such as fertility issues (Otth et al 2021).
Transition is a broad concept and relates to all domains of life (de Camargo 2011). Young adulthood is a time of transition, growth and change (Ginsberg et al 2006), which involves challenging biological, psychological and social processes. In addition to the range of challenging transitions experienced by all adolescents, young adults who had childhood cancer must also negotiate a transition to adult services. Transition is the ‘purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented healthcare systems’ (Blum et al 1993). The transition to adult services has emerged as a global health and social care issue over the past decade (Kerr et al 2020a). It is a complex and multistage process with multiple stakeholders which involves negotiating several systems of care such as healthcare, education and social welfare (de Camargo 2011).
As young adults with a range of medical conditions graduate from children’s services, they may experience challenges in engaging with adult services (Kerr et al 2020b). These young adults may feel inadequately prepared for the different culture of adult care (Kaufman and Pinzon 2007) and the expectation that they will be autonomous (Beresford and Stuttard 2014). They may also find it challenging to move on from long-standing, trusted relationships with children’s service providers, who may feel like part of their family (Kerr et al 2018). A reluctance to leave children’s services may contribute to unfavourable outcomes, such as non-adherence to treatment and loss to follow-up in a range of medical conditions (Department of Health 2006).
The transition from children’s to adult long-term follow-up care for young adults who had childhood cancer is a crucial period (Otth et al 2021). McInally (2013) reported that young adults who had childhood cancer and their families can find it challenging to move on to adult cancer services because of concerns about issues occurring at the transition to these services (National Cancer Survivorship Initiative 2013). Since many late effects do not emerge until adulthood, some young adults who had childhood cancer may feel that they do not require long-term follow-up care (Rokitka et al 2017), which adds to the challenges of engaging them in adult services.
As a result of the challenges that this population commonly experience at the transition to adult services, they have been referred to as the ‘lost tribe’ – that is, they are considered to have no ‘homeland’ – which raises the question of whether adolescent oncology should be provided as a separate service (Michelagnoli et al 2003). Compounding these challenges are reports that some adult service providers have no previous experience of caring for young adults who had childhood cancer (McInally and Cruickshank 2013).
Various nurse-led initiatives are emerging to support young adults who had childhood cancer to remain engaged in health and social care services, such as the ‘Re-engage’ eHealth intervention (Signorelli et al 2018). This involves two online or telephone consultations with a survivorship nurse and is focused on those who have disengaged from cancer-related follow-up care. Another initiative is nurse-led video-coaching interventions, which involve empowering young adults who had childhood cancer to manage symptoms such as cancer-related fatigue, and to improve their self-efficacy and lifestyle (Bouwman et al 2019). Although these local initiatives are commendable, there are challenges in disseminating them to a global audience.
Schwartz et al (2017) reported that the engagement in adult services of young adults who had childhood cancer is suboptimal; therefore, best transition practice for these individuals requires greater clarity.
Refresh your knowledge of best transition practice by accessing and reading the National Institute for Health and Care Excellence (NICE) (2016) guidelines on Transition from Children’s to Adults’ Services for Young People Using Health or Social Care Services, available at: nice.org.uk/guidance/ng43
Best transition practice has been developed for a range of medical and chronic conditions, with few identified related to young adults who had childhood cancer. Since it has been suggested that transition models are transferable across different disease trajectories (Kerr et al 2018), this section draws out the core principles of relevant transition models in relation to a successful transition to adult services and applies these to the cancer context.
Preparation is the underpinning principle of a successful transition to adult services for young adults who had childhood cancer. It relates to the young adult being prepared for the different philosophy, configuration and delivery of adult services before the transfer. Preparation also includes parents and/or carers feeling equipped to continue to support the young adult to transition to adulthood and adult services. Children’s services should also be prepared to support young adults to become increasingly autonomous in terms of their healthcare management by commencing the transition process early and engaging with relevant adult services early. Finally, adult services rely on children’s services alerting them early to the future arrival of a young adult so they have time to prepare adequate resources, in addition to assessing staff training needs so that continuity of care can be provided.
Various interventions for a successful transition to adult services for young adults who had childhood cancer are outlined in Box 1 using the PREPARATION acronym, which was devised by the author. These interventions are not distinct and there is some overlap between them. Commencing the transition process early is crucial because this will provide time for the other interventions to be implemented.
P – person-centred and individualised, holistic, needs-based approach
R – elationships between staff in children’s and adult services
E – early commencement to the transition process
P – primary care involvement
A – autonomy
R – record-keeping: accurate documentation
A – advancing knowledge and skills for staff
T – transition coordinator or key worker
I – interprofessional and interagency working
O – organised transition plan
N – needs of parents and/or carers assessed
The transition process must be individualised, person-centred and tailored to meet the needs of young adults and their families and/or carers (de Camargo 2011, NICE 2016, Kerr et al 2018). According to McCormack and McCance (2017), person-centredness is: ‘an approach to practice established through the formation and fostering of healthful relationships between all care providers, service users and others significant to them in their lives. It is underpinned by values of respect for persons, individual right to self-determination, mutual respect and understanding.’
Person-centred care considers the person first, and involves working with the individual rather than ‘doing to’ them. It involves using the characteristics of holistic and individualised care, respect and empowerment as the foundation of clinical practice (Morgan and Yoder 2012). Holistic care involves ‘whole person care’, which requires the nurse to display attributes such as empathy, compassion and self-awareness (Frisch and Rabinowitsch 2019). As a family-focused approach is often used in children’s services, a personalised approach that is inclusive of the individual’s family should be considered during the transition process (Kerr et al 2020a).
In the cancer context, this approach entails considering age, cancer type, future risk of late effects of treatment and the personal needs of young adults and their families (McInally and Cruickshank 2013). An individualised and person-centred approach recognises that individuals will be ready to transfer to adult services at different times (Great Ormond Street Hospital for Children NHS Trust 2011), rather than the legal age of adulthood, often 18 years. Identifying the readiness of the young adult to transfer to adult services can be a challenge, so it requires each young adult to be assessed for readiness (Otth et al 2021). Nurses can use a range of tools to support this individual assessment, such as the Transition Readiness Inventory (Schwartz et al 2017), Cancer Worry scale, Self-Management Skills scale and Expectations scale (Klassen et al 2015).
Effective communication and collaboration between children’s and adult services is one of the main interventions considered to contribute to a successful transition to adult services (Kerr et al 2018). It should begin with children’s services contacting adult services well in advance of the young adult making the transfer to adult services, to share relevant information about the individual’s holistic needs. This should lead to adult services having time to assess and prepare with relevant resources, such as equipment, adequate skill mix and teaching staff new skills.
To facilitate the ongoing sharing of relevant information during the transition process, communication should continue between children’s and adult services in hospital and primary care settings. Historically, the responsibility for preparing young adults to transition to adult services has been with children’s services; however, NHS England (2013) stated that the responsibility should be joint between children’s and adult services. This emphasises the importance of adult services engaging early in the transition process.
The transition process should commence early because this will provide time for all other interventions to be implemented (de Camargo 2011, Kerr et al 2017). An early commencement recognises that transition to adult services is a process, rather than an event (Freyer 2010). The age at which to commence the transition process is subject to debate, but there is some consensus that it should commence before the individual reaches the age of 14 years (de Camargo 2011). An early commencement will provide an opportunity for young adults, their families and/or carers, children’s and adult services to prepare for the move to adult services (Kerr et al 2018).
Coordination of services throughout the transition process to include primary care is crucial (Ginsberg et al 2006, Care Quality Commission (CQC) 2014). It will involve determining whether the young adult is registered with a GP, since most of the care provided is likely to be community based. Many young adults with life-limiting conditions have reported they have direct access to staff in the hospital setting while in children’s services, resulting in GPs being marginalised (Kerr et al 2018). This direct access can change when the young adult moves to adult services, requiring a more active role for their GP, who will often become the first point of contact. If the young adult has registered with a GP, this will mean that primary care staff – including nurses, who are often key workers (Teenage Cancer Trust 2021) – can ensure they have the knowledge and skills to provide holistic care (NICE 2016).
Throughout the transition process, young adults’ autonomy should be increased gradually (Ginsberg et al 2006, Kerr et al 2018, Otth et al 2021), because this will enhance their knowledge, skills and ability to manage their condition as they progress towards adulthood. Among young adults who had childhood cancer, there are reports of knowledge deficits regarding their disease, previous treatments and risks of late effects (Freyer 2010, Shea et al 2019). Therefore, beginning in children’s services, nurses should focus on empowering young adults to understand their diagnosis and possible late effects of treatment.
Outlining the rationale for follow-up care to young adults is important to promote their engagement in adult services, which includes monitoring for potential late effects (Shea et al 2019). The option of partial or full lone consultations for young adults is one intervention to support their increasing independence (Kerr et al 2020a), and nurses are ideally placed to introduce these lone consultations.
Accurate and current information about young adults’ holistic needs should be communicated between children’s and adult services early in the transition process. The transfer of pertinent information should continue throughout the transition process so that adult services have an opportunity to prepare. Written records are also crucial through the transition process and at the point of transfer to adult services. At the point of transfer, a comprehensive written summary of the young adult’s holistic needs should be prepared so that current information about them is available at the first appointment in adult services (Langford and Wright 2017). NICE (2014) guidance states that children and young people who have been treated for cancer should have an end-of-treatment summary and care plan that includes follow-up arrangements. The care plan should be used by key workers to support the transition to adult services.
In Northern Ireland, work is under way to improve and streamline transition processes regionally. This includes standardising handover documentation, such as end-of-treatment summaries and relevant care plans, to adult services and GPs. A ‘health passport’ containing essential information that is carried by young adults has also been recommended by the CQC to reduce the need to repeat information related to their condition; however, these are used infrequently (CQC 2014).
To support developments in practice, embedding transition practice in undergraduate and postgraduate nurse education curricula is required (McInally 2013). This will communicate the standards for best transition practice, with shared practice learning that focuses on approaches to overcoming any barriers. In addition, training updates in practice will communicate how best to support young adults and their parents and/or carers throughout the transition process.
Due to the complexities of the transition process, it should be coordinated by a nominated transition coordinator or key worker in partnership with the young adult (Smith et al 2016, Kerr et al 2018). To advocate for the young adult over the transition process, the transition coordinator should know how systems work and have access to important contacts. The transition coordinator should be a continuous contact for the young adult as they prepare for the transition (de Camargo 2011). Since nurses are often the key worker for young adults, they may be in the optimal position to take on this role (Teenage Cancer Trust 2021).
In health and social care trusts in Northern Ireland, the aim is for a new key worker in the adult setting to be identified early to support the young adult throughout the transition process, including during and after their transfer to adult services. However, the key worker in children’s services may continue to provide support to the young adult to facilitate their full integration into adult services. This short-term overlap aims to minimise any potential gap in services.
Interprofessional and interagency working includes engaging relevant healthcare professionals and agencies to support young adults who had childhood cancer and their parents and/or carers with the transition process (de Camargo 2011, Kerr et al 2018). The interprofessional team may include nurses, doctors and allied health professionals from children’s and adult services in hospital and community settings, and from the statutory and non-statutory sector. McInally (2013) recognised the importance of interprofessional working in improving transition for young people who had childhood cancer.
In Northern Ireland, a regional Teenage and Young Adult Multidisciplinary Advisory Team, which includes clinical nurse specialists and social workers, combines disease-specific and age-specific expertise to discuss the holistic support of young adults at main transition points, such as to adult services. It responds to the first statement of the NICE (2014) quality standard on cancer services for children and young people, which states that they should have their diagnosis, treatment and support agreed and delivered by a cancer site-specific multidisciplinary team.
To prevent loss to follow-up after the young adult has transferred to adult services, a well-organised transition plan is required (Otth et al 2021). This can take the form of a transition care pathway, such as the ‘Ready Steady Go’ (readysteadygo.net) programme at Southampton Children’s Hospital in England (Nagra et al 2015). As a minimum, it is recommended that a transition plan should be in place at least 12-18 months before the transfer to adult services (Freyer 2010). The young adult should be at the heart of the person-centred transition plan, which may involve the provision of education and advice depending on their needs (CQC 2014).
One aspect of the transition plan could be the provision of a joint meeting between children’s and adult services with the young adult before the transfer (Crowley et al 2011). This meeting is often referred to as a transition or graduation clinic and can bridge any potential gap between children’s and adult services for young adults with a range of chronic conditions (Menon et al 2020). The transition clinic can also act as an introduction to staff in adult services in advance of the transfer. A phased approach to the transition plan will provide time for young adults and their parents and/or carers to adjust to the changes.
The main support for young adults who had childhood cancer is often their parents and/or carers, so an assessment of their needs should be completed during the transition process (Kerr et al 2018). This reflects the fourth statement of the NICE (2014) quality standard, which states that they, and their families and carers, should have their psychological and social needs assessed at important points on their care pathway and receive support based on their identified needs. Nurses are in an ideal position to assess and provide this support.
Shea et al (2019) reported that parents of young adults who had childhood cancer have knowledge gaps, which identifies the need to assess their information requirements to support informed decision-making. Increasing young adults’ autonomy is one of the interventions that can support a successful transition to adult services, beginning in children’s services. Therefore, parents should be guided to support young adults to increase their autonomy (CQC 2014), while recognising that some parents may find it challenging to move aside to support the development of young adults’ autonomy (Kerr et al 2020b).
Discuss with your colleagues how you currently prepare young adults who had childhood cancer for the transition to adult services, considering the interventions outlined in the PREPARATION acronym (Box 1). What three actions could you apply to your practice based on the information in this article?
Due to the growing cohort of young adults who had childhood cancer, there is an increased need for knowledge regarding the risk of adverse long-term health consequences of treatment and provision of adequate interventions (Winther et al 2015). The transition principles outlined in this article aim to contribute to the discussion about the interventions related to a successful transition to adult services for young adults who had childhood cancer. An early commencement to a well-organised transition plan, which adopts a person-centred, individualised and holistic approach, will contribute to a successful transition to adult services. The outcome of a successful transition to adult services is an autonomous young adult feeling supported to engage in adult services.
Nurses have a central role in preparing young adults and their parents and/or carers for the transition to adult services. This role may involve identifying what support is currently available and using the PREPARATION acronym to determine what interventions should be introduced. Since nurses are often the key worker for young adults who had childhood cancer and form strong bonds with them over many years, they are ideally placed to introduce such interventions and support the young adult to successfully transition to adult services.
Consider how best practice in the transition to adult services for young adults who had childhood cancer relates to The Code: Professional Standards of Practice and Behaviour for Nurses, Midwives and Nursing Associates (Nursing and Midwifery Council 2018) or, for non-UK readers, the requirements of your regulatory body
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