Survival rates of children and young people diagnosed with cancer in the UK have more than doubled in the past 50 years, with 84% surviving at least 5 years (Cancer Research UK (CRUK), 2023). However, survival comes at a cost, with at least two thirds of childhood cancer survivors experiencing adverse late effects, which include poor health status, and earlier death compared with sibling and population comparison groups (Fidler and Hawkins, 2017; Chang et al, 2022). To support their future health and wellbeing young people diagnosed with cancer require transition into adult services for ongoing treatment, follow-up surveillance and management of possible long-term impacts of their cancer and its treatment (World Health Organization (WHO), 2021). It is essential that health professionals caring for this patient group take a proactive approach to this transition to ensure young people continue to access appropriate, ongoing care and surveillance into adulthood.
This article describes a two-year quality improvement (QI) project that developed pathways for healthcare transition (hereafter referred to as transition) for young people diagnosed with cancer before the age of 18 years in the South Thames region of England.
There is significant impetus to improve transition within the NHS, however studies show that these processes remain inconsistent, both in terms of service provision and what has been experienced by young people themselves (Colver et al, 2018; National Confidential Enquiry into Patient Outcome and Death (NCEPOD), 2023). Young people's transition into adult services requires a person-centred, developmentally appropriate, purposeful and planned approach before, during and after the transfer of care (Blum et al, 1993; National Institute for Health and Care Excellence (NICE), 2016). The transition process aims to empower and equip young people with the skills and knowledge they require to manage their own health and wellbeing (Nagra et al, 2015). Inadequate transition preparation risks young people feeling unsatisfied, disengaged from services, and unprepared to take increased responsibility for their health, resulting in poorer health outcomes (NHS England/NHS Improvement, 2019).
Cancer service specifications (NHS England, 2021) require that young people with a suspected cancer diagnosis are referred to one of 19 tertiary specialist centres, known as principal treatment centres (PTC). In the South Thames region, the PTC is responsible for co-ordinating shared care with 16 paediatric oncology shared care units. The Children's, Teenagers' and Young Adults' (CTYA) Cancer Operational Delivery Network oversees all aspects of service delivery and region-wide transformational service improvements. In response to ambiguity surrounding young people's transition, and reports of poor patient experience, the network commissioned a two-year nurse practitioner post to improve transition pathways. Organisational issues have been cited as the main barrier hindering improvement initiatives in the NHS (Health Foundation, 2015), and most young people with cancer receive care across two or more NHS trusts. Therefore, a cross-organisational approach to transition process improvement and the involvement of multiple, diverse stakeholders was essential to ensuring the success of this transition QI project.
Aim
The QI project aimed to establish pathways and processes that facilitated the successful transition of young people with cancer from children's into adults' healthcare services, thereby promoting their health and wellbeing.
Project design and methodology
The QI project consisted of four overlapping phases, based on the NHS Education for Scotland's (2023) QI journey (Figure 1).
The Point of Care Foundation (2013) experience-based co-design toolkit was used to guide stakeholder involvement. Mentoring and support was provided by the Burdett National Transition Nursing Network's regional nurse advisers, and the hospital's patient and public involvement (PPI) lead. Internal governance approval was granted through the hospital QI committee.
Phase 1. Scoping stakeholders and developing understanding
Phase 1 involved building networks of support for change, and developing understanding of current practices in transition locally, nationally and internationally. Collaborations were built with experts in young people's transition, and in QI, within and external to the cancer specialty. The data collection methods used to develop an understanding within the network included:
Patient and public involvement: capturing patient and parent/carer experiences
Efforts to involve young people and parents/carers began in the first weeks of the project, and continued throughout the design and implementation phases. Project information sheets were emailed to all those who expressed an interest in the project, and funding was secured to enable thank you vouchers to be sent to PPI participants.
Young people and parents contributed via The Royal Marsden Cancer Patient Voice online platform (https://patients-voice.cancerbrc.org/the-transition-project-improving-the-experience-of-moving-to-adult-healthcare-update), via one-to-one telephone discussions and online focus group discussions. As more patient stories were added, key touch points were identified and agreed upon by participants. An impactful video was made to capture these key touch points, for use in the later phases of the project.
Pathway mapping: capturing health professionals' experiences
Online PPI workshops were held to explore health professionals' experiences of providing young people's transitional care in order to map current pathways and processes. Health professionals from both adolescents' and adults' services within the PTC, and across the region, were invited to attend. A virtual whiteboard was used to record the patient pathways and processes, with participants encouraged to focus on their individual experiences, roles and responsibilities (Figure 2).
Phase 2. Establishing the working group: developing aims
In Phase 2, the Operational Delivery Network transition working group was established to oversee and co-design the QI project. The working group consisted of 22 key stakeholders, including 3 young people, 3 parents/carers; 12 health professionals from children's and adults' cancer services, and 4 individuals with expertise in healthcare transition/QI methods.
The working group members watched the PPI video and reviewed information from Phase 1, before moving into three facilitated breakout rooms. Each room had a mixture of health professionals and PPI participants. Cause and effect (fish bone) analysis was used to identify underlying barriers to transition, and to decide on objectives for the project (East London NHS Foundation Trust, 2023). Following a full group discussion, eight objectives (Table 1) were agreed and used to underpin three ‘Task and Finish’ working groups (Table 2).
| Objective 1 | Provide colleagues and patients/parents/carers with guidance on the age that transition should commence. Suggest that initial conversations should start around 14 years of age |
| Objective 2 | Standardise transition pathways across the network and tumour groups. Specify when the transition pathway commences, when the transfer occurs and what happens before, during and after transfer into adult services |
| Objective 3 | Information hub: offer a standardised approach to information, which should be given at key touch points, eg at diagnosis, including information about ‘Ready, Steady, Go’, the Network approach to transition, changes to out-of-hours advice and urgent care pathways at 18 years of age. This should be available to health professionals, young people and parents/carers |
| Objective 4 | Shared expectation of what transition is: this is not just the transfer of care. Transition care is required before, during and after transfer into adult services |
| Objective 5 | There must be a dedicated, named health professional for transition, who is aware of what is happening, when it is happening and who will co-ordinate the young person's transition |
| Objective 6 | A directory of adult/teenager and young adult services that young people can refer to. This should include what is offered at each hospital, information on primary care, helpline/contact information, and top tips to aid the transition process. A who, what, where, how guide |
| Objective 7 | There must be allocated time and designated age-appropriate space for transition discussions |
| Objective 8 | Treatment summaries should be accurate and updated, as required |
| Task and Finish Group 1. Benchmarking transition care |
Objective: Establish a shared understanding across the South Thames Child, Teenager and Young Adult Cancer Operational Delivery Network of what best practice in cancer transition should look like: standardised, guided by best practice |
| Task and Finish Group 2. Initiating transition |
Objective: Identification of young people aged 14 years old so that an initial discussion about transition can take place → timely identification to enable early initiation of transition, and facilitation of a purposeful and planned transition |
| Task and Finish Group 3. Information hub |
Objective: To ensure information about transition is accessible to young people, parents/carers, health professionals, and members of the public: a standardised, network-wide approach to information provision across the South Thames Children's, Teenagers' and Young Adults' Cancer Operational Delivery Network |
Phase 3. Testing and implementing: Task and Finish groups
Membership of each Task and Finish group was decided according to the nature of the task. Each group worked together to develop a specific aim with clear, measurable targets.
Phase 4: Spread and sustainability
Learning and resources from this QI project were shared across the Operational Delivery Network, and at national and international meetings. The Network has committed to ongoing support for transition. A part-time transition nurse practitioner will continue the benchmarking roll-out and provide strategic leadership.
Results
Medical records audit
The audit to compare medical records (n=25) against the NICE (2016) quality standard for transition found minimal evidence of young people's transition care documented in patients' notes (Box 1). All 25 medical records were from patients aged 16 years or older at the time of the audit. Despite this, the process of transition or transfer into adult services was mentioned in only eight of the 25 records. Six of the mentions occurred after the young person's 18th birthday, suggesting the action had been triggered by the patient's birthday rather than a planned approach to transition. Overall, the audit confirmed that national recommendations for transition were not consistently met.
Medical records audit results
Medical records audit (n=25): acute lymphoblastic leukaemia patients, aged 16 years or older, attending the paediatric haematology clinic over a 3-month period (1.05.21 to 31.07.21)
Experience-based-co-design outcomes
Young people (n=16), parents (n=29) and children's/adults' health professionals (n=44) working in the PTC (tumour groups, leukaemia and central nervous system cancers) and five paediatric oncology shared care units (within West Kent and Surrey) engaged with this QI project. Six young people and 6 parents remained involved throughout all stages of the project.
Project participants were instrumental in co-designing the project, prioritising the project objectives, deciding on the task/finish groups, co-producing the Operational Delivery Network's six shared principles for developmentally appropriate cancer transition, and developing and testing the benchmark tool (available online for healthcare providers). Within the Task and Finish groups, PPI participants worked to ensure that young people's needs were central to the transition process, and advocated for open access for young people and parents/carers to all transition-related information that resulted from this QI project.
Nine process and pathway mapping workshops were held with health professionals, which each produced similar transition pathways (Figure 2). It was only when delving deeper, seeking detail on what happens, when and how it happens, and who might be responsible, that problems emerged. No teams had clear pathways for when to commence the transition process or who was to take responsibility for this, and there was little understanding of the roles of different health professionals or the oncology shared care units and PTC in initiating and supporting transition. Health professionals reported their desire and efforts to prepare and support young people during their transition into adult services; however, much of the work was carried out on an ad hoc basis, with established transition assessment tools such as ‘Ready, Steady, Go’ rarely being used (Nagra et al, 2015).
The project working group used information from the scoping work to co-produce eight objectives (Table 1). Objectives 1, 2, 4, 6 and 7 demonstrated the need to establish a network-wide understanding of what cancer transition should look like, enabling the group to draft six shared principles for cancer transition, which were later agreed and adopted by the South Thames CTYA Cancer network (Table 3).
| Principle 1 | Timely identification of young people requiring transition, and provision of a transition plan |
| Principle 2 | Provision of developmentally appropriate care that empowers young people and supports their families |
| Principle 3 | Identification of a transition keyworker for all young people who require transition |
| Principle 4 | Effective communication, shared responsibility, and joint working |
| Principle 5 | Provision of support for transition before, during and after the transfer to adult services |
| Principle 6 | A planned route for the young adult to access urgent advice and/or emergency care, agreed by and communicated to all involved parties |
The objectives (Table 1) and principles (Table 3) were used by the working group to establish the three Task and Finish groups. The objectives and proposed outcomes are presented in Table 2.
At the time of writing, four tumour groups and three shared care units have undertaken the benchmarking exercise and created action plans. Quarterly Community of Practice events are held to provide peer support for the teams undertaking benchmarking. The online Information Hub is live, accessible to patients, families, the public and health professionals, with further information and resources being added as they become available. A ‘healthcare transition’ tab has been incorporated in the PTC electronic patient record system, enabling the identification of patients requiring transition, which facilitates the sharing of the ‘Ready, Steady, Go’ assessment tool with patients, and transition record-keeping.
Discussion
The medical records audit provided evidence that services were not effectively meeting NICE (2016) quality standards for transition. However, the audit did not establish why the quality standards were not being met, or potential mechanisms that might help us to meet them. Health care is about more than job roles, patient numbers or the set of tasks to be completed; it is intimately entwined with human thoughts, relationships, feelings and culture, and how they interact (Martin, 2021). To make meaningful sustained change we need to acknowledge and understand not only the structure of the organisation, but also the culture within (Bate and Robert, 2006). To develop our understanding qualitative data were required to supplement the audit findings.
Greenhalgh et al (2005) described stories as having the ability to convey multiple and complex truths, depicting the interplay of actions, people and environments, bridging the gap between the formal space of an organisation and informal space of relationships, feelings, ‘unwritten rules’ and subcultures. Listening to the stories and experiences of those with direct experience of transition or transition care delivery enabled a deeper understanding of current practices, what was working well and not so well, and what actions might be helpful to bring about change.
Involving young people, parents/carers
Experience is a form of expert knowledge. The unique and expert knowledge held by patients and their parents/carers, along with their goals for service improvement, should be placed at the centre of the design process (Bate and Robert, 2006). Incorporating patient experience into designing and implementing service change positively influences outcomes for both patients and the organisation (Doyle et al, 2013; Palmer et al, 2019). However, gaining, maintaining and incorporating patient experience into QI is not always straightforward, and requires planning and resources.
Key challenges when conducting PPI is ensuring that a diverse range of participants is invited to share their experiences, including underserved populations, and that enough people participate to achieve exposure to contrasting thoughts and experiences (Martin, 2021). The use of a variety of methods, including telephone calls, focus groups and online platforms enabled participants to share their experiences – they may not have chosen to do so had this been limited to a single method of eliciting their views.
To avoid tokenism of participation, PPI work must move beyond simply collecting patient experiences towards full partnership working (Ocloo and Matthews, 2016). Therefore, planning for involvement began at the project's inception, with PPI actively supported throughout the QI process (Armstrong et al, 2013; Robert et al, 2015). With early and regular involvement and encouragement, participants' confidence and expertise grew over the course of the project, resulting in a strong PPI voice in the development of the project's objectives and decision-making regarding the improvement strategies used.
Involving health professionals
It is essential that stakeholder involvement also includes those who directly provide care to young people. Young people's cancer care is built on a complex network of care processes and pathways, with the quality of the care delivered often being determined by how well care providers work together (Jones et al, 2021). Quality improvement projects are more likely to succeed when they are driven by those working within the system and when collaborations cross professional and organisational boundaries (Wright et al, 2022). Bringing together health professionals from across the entire patient pathway in the workshops and working groups helped individuals to develop a shared understanding of problems, and initiated the process of working together to bring about change.
Experience-based codesign
Quality improvement in health care at its best is built on strong partnerships between staff, patients and parents/carers (Jones et al, 2021). In this project, experience-based co-design methodology facilitated the integration of service-user experience and health professional experience to stimulate co-design and co-production. Collaboration between all stakeholders is key (Jones et al, 2021): to ensure that it is successful requires a political and sociocultural mindset shift from the ‘experts know and decide everything’ to ‘we need to decide things together’ and the adoption of a blame-free, nurturing and open environment (Palmer et al, 2019; Wright et al, 2022). It was essential to facilitate ‘safe spaces’ during the project so that all participants felt able to contribute.
The use of experienced facilitators during the objective-setting workshops helped negate any oppositional dynamics between health professionals and address the power imbalances that can be experienced between patients/parents and health professionals (Green et al, 2020). Sharing stories helped participants to see that they were not alone in their experiences and in their desire to see improvement. This fostered the development of a shared sense of purpose for the group, which contributed to the project's success. (Palmer et al, 2019; Jones et al, 2021). The stories captured in the PPI video ensured that significant experiences – known as touch points – were heard by all members of the working group. Identifying key touch points is a critical step when designing changes aimed at improving the patient experience (Palmer et al, 2019). Valuing the contributions of all participants and reflecting on shared experiences helped to ensure that the project objectives and resulting outcomes were relevant and appropriate for all (Robert et al, 2015; Green et al, 2018).
A systematic review on experience-based co-design by Green et al (2020) found that maintaining and carrying forward the involvement of the participant cohort from the experience gathering phase to the co-design phase was a commonly reported problem. This was not a difficulty that was encountered in the case of this QI project. The majority of the project's groupwork was carried out using virtual methods. There are disadvantages associated with not meeting face to face due to the loss of informal chat and incidental learning in the tea break (Hargreaves et al, 2022). However, for this project, meeting virtually promoted inclusion by facilitating the participation of a range of people from across a large geographical area, with some young people even attending between university lectures. This enabled some participants to remain involved even when their personal circumstances had changed.
The transition nurse practitioner
This QI project was made possible through the funding of a network-wide transition nurse practitioner post. Nurses on the front line of health care are ideally placed to ensure that the philosophy of ‘nothing about us without us’ is upheld when changes to health services are being contemplated, by spearheading meaningful engagement with those most affected (Jackson and Moorley, 2022:75).
Initially, there was some confusion regarding the role of the transition nurse practitioner, with some health professionals thinking that the post holder was responsible for implementing transition of all patients. Providing regular information about the project and its progress helped to clarify expectations and promote harmony.
Safe, effective transition requires collective responsibility between all health professionals working with young people. Understanding what transition is, the processes that facilitate it, and their role in supporting young people to ensure transition proceeds at the time and pace appropriate to individual need, is crucial (NCEPOD, 2023). During the scoping work, it was clear that some health professionals had a good understanding of transition; however, many expressed uncertainty regarding their role and the role of others. A cornerstone of QI work is ensuring that the people closest to issues affecting care quality have the time, permission, skills and resources they need to understand and address them (Jones et al, 2021). In this project, the transition nurse practitioner was able to initiate and facilitate collaborative working between health professionals, young people, and parents/carers that was outside traditional organisational boundaries. This created a shared understanding of transition, and to design and implement practices to improve the experience of transition for all involved.
Colver et al (2019) found that good practice in transition care led by individual enthusiasts rarely generalises to other areas or into adult services. Individuals often work in isolation when undertaking QI projects, unaware of what is happening in other teams or organisations, risking duplication (Jones et al, 2021). The transition nurse practitioner used the expert knowledge of the Burdett National Transition Nursing Network's regional nurse advisers to drive the project forward. Regular attendance at national and regional online Burdett National Transition Nursing Network Community of Practice events facilitated sharing of information about how other organisations addressed transition, what worked, what didn't work, examples of good practice and sharing of resources, thus reducing silo working and duplication.
Dedicated time for the transition nurse practitioner role was essential for contacting and bringing together key individuals, drafting documents, driving forward the Task and Finish groups' ideas, and recording and reporting the QI process and project outcomes. The success of this project supports the findings by Colver et al (2019), who reported that employing a transition nurse practitioner and engaging a network-wide working group is an effective method of achieving organisation-wide commitment to improving transition.
Using QI methodology
An important consideration of this work was that this was a QI project, rather than a research study. Quality improvement has elements in common with research, in that both seek to use systematic methods with the ultimate aim of improving practice in health care, but there are important differences (Backhouse and Ogunlayi, 2020). Research aims to create new knowledge that is generalisable outside the research setting, while QI seeks to understand what works best within a specific setting and how available evidence can be translated into practice in the context of the local environment (Hain, 2017; Oliver-McNeil, 2019; Backhouse and Ogunlayi, 2020; NHS Health Research Authority, 2023). This QI project provides an example of how QI methodology, the NHS Education for Scotland QI journey (2023) and experience-based co-design (Point of Care Foundation, 2013) were used to support the development and adoption of practices aimed at improving healthcare transition pathways for young people diagnosed with cancer within the South Thames region.
Limitations
Although this project strived to include diverse views, professionals who volunteered to participate may have had an existing interest in young people's healthcare transition, potentially creating bias. In addition, all participants were fluent in English and had access to technology, with the ability to support their virtual participation in the project. The limitations of excluding non-English speakers and those without access to a digital device or the internet are acknowledged. For future projects it would be advantageous to ensure that resources are committed to supporting the engagement and participation of a broader range of service users.
Conclusion
The findings of the QI project described in this article demonstrate that, for the transition of young people with cancer into adult services to be successful, a planned and co-ordinated approach is required across the entire patient pathway, spanning multiple NHS trusts and children's and adults' services. Capturing and engaging diverse stakeholder experience – in this case, the experience of young people, parents/carers and health professionals using experience-based co-design – provided unique and shared insights into the experience of all relevant stakeholders.
This project provides a framework for other organisations caring for young people requiring healthcare transition to facilitate change. Resources and innovations developed during this QI project, including the webpage and benchmarking tool, continue to be disseminated across the region and within national cancer networks, demonstrating the wide impact of the project. The success of the project contributes to the growing evidence of the value of nurse-led QI and collaboration between health professionals and patients when developing interventions for health improvement.