Internationally, there has been increased recognition for specialist services for teenagers and young adults (TYA) with cancer, reinforced by key documents, such as the TYA cancer service guideline (CSG7) from the National Institute for Health and Care Excellence (NICE) (2005) and the Blueprint of Care for Teenagers & Young Adults with Cancer (Smith et al, 2016). Despite this, there is a paucity of guidance and a sparse evidence base as to how service provision should evolve to address the need for such specialist services. Consequently, there is a need to devise creative approaches to service provision, including the development of new roles. An additional challenge in providing adequate care to TYAs with cancer is complicated by the heterogenous nature of this patient group (Smith et al, 2016), consequently it is arguable that a holistic approach tailored to the individual should be paramount.
The author works in a principal treatment centre (PTC) for TYAs with cancer, which also serves as a transplant centre. Within the author's Trust, the number of stem-cell transplants performed has continued to increase annually, with a year on year increase over the past 5 years. In 2021, 156 autologous and 69 allogeneic stem cell transplants were performed, or an average of 18 transplants each month. Of these, each month two procedures were carried out in TYA patients, adding to the existing workload consisting of 60 TYA patients in long-term follow-up. (TYA at the author's Trust includes those aged 16-24 years, as the aim is to transition these patients to adult services by their 25th birthday.) Historically, patients were treated either under the paediatric or the adult transplant team. Transition to the adult team meant that TYA patients were no longer seen in an age-appropriate environment in outpatients, or cared for by health professionals with specialist knowledge, counter to the recommendation of CSG7 (NICE, 2005).
The service gap in terms of lack of provision of age-appropriate outpatient care offered a unique opportunity to restructure services as part of a quality improvement initiative, to ensure that TYA transplant patients received age-appropriate care. This gave the author the opportunity to implement this initiative, enabling her to combine her clinical experience as a stem-cell transplant clinical nurse specialist (CNS) and her previous work in a TYA cancer unit, as well as applying educational knowledge obtained from completion of the postgraduate certificate in TYA cancer care.
Role development
The author experienced numerous challenges in establishing this role. This was not only because this was a new role in the author's workplace, but also because there were no other practitioners in such a role locally or nationally on whose experience to draw or whose guidance could be sought. Initially, the process required raising awareness about the role and educating colleagues. Numerous stakeholder meetings were held in order to improve the patient journey for the TYA transplant patient, and this continues to evolve. Issues that arose included a lack of awareness of the TYA specification in terms of recommendations for service provision as a PTC, and therefore the requirement to provide care in an age-appropriate environment.
Consequently, the role itself was integral to educating other staff about the requirements and the underpinning rationale for its implementation. Other issues included space and funding issues, which required collation of statistics to identify the additional workload in establishing a dedicated TYA transplant clinic in the children and young people's centre. A primary concern raised by senior staff on the day unit was difficulty in obtaining a timely review of the unwell patient. In order to address this, the author obtained the clinical assessment and non-medical prescribing competency, enabling her to review patients independently.
Feedback on the new designated TYA transplant clinic was obtained through patient experience questionnaires 18 months after the service had been launched. The author had also obtained additional clinical skills within 12 months of the launch. Questionnaires were distributed to a total of 20 patients and there was a 100% response rate (Box 1). All participants rated the role of the TYA transplant CNS as beneficial to their patient experience, for the following reasons:
- They now had a single point of contact
- They had access to their CNS in both inpatient and outpatient care
- The improved communication skills of the trained practitioner meant information was better conveyed
- The role provided consistency, facilitating rapport building and trust in their clinical team.
Box 1.Patient experience questionnaire used to evaluate role of TYA transplant clinical nurse specialistThank you for taking the time to complete this survey. Please note that your answers will be confidential and used only to develop and optimise the service provided for teenagers and young adults undergoing a stem cell transplant. In particular, we are looking at the role of the designated key worker/clinical nurse specialist for this patient group, and whether or not this has been beneficial to patient care.
- Do you think it is beneficial to have a transplant clinical nurse specialist designated specifically for teenagers and young adults? Yes/No
- If yes, what are the benefits that you have noticed?
- If no, why not?
- Do you think it is helpful to have the same clinical nurse specialist/key worker both pre- and post-transplant? Yes/No
- Are there any improvements that you think would be beneficial for outpatient care of teenagers and young adults undergoing stem cell transplants?
Thank you for participating in this survey, and if there is anything else you would like to add please write in the free space below ……………………………………………………….
However, it is acknowledged that there was potential for response bias because the surveys were distributed by the author. It was evident from the feedback that patients valued having a single point of access via the TYA transplant CNS. However, as the role has evolved, it has highlighted the need to consider the workforce structure further in order to ensure adequate cover during annual leave and sickness.
The Trust Youth Forum was set up with a colleague to raise the profile of young people's voices within Patient and Public Involvement and Engagement in the Trust, and to involve the young patients in service development, including improving the quality of the patient literature available (Figure 1). This involved liaising with youth forums at other NHS trusts and the NHS National Youth Forum to share guidance on how to set up and run such a group. Monthly virtual meetings of the forum are now held to discuss ongoing projects and for clinicians to present any projects/research designs for feedback from the young people. Recent completed projects have included the design of an LGBTQ+ mural for the Trust, writing patient information literature for TYA, including a leaflet on sexual health, and updating/redesigning the Trust's TYA web page.
Multidisciplinary support
As a result of this work, there is now a dedicated TYA transplant clinic run by haematology transplant consultants and the TYA stem-cell transplant CNS, to provide both acute transplant follow-up and late effects care. The clinic also has the support of allied health professionals, where clinically appropriate, including from colleagues from dietetics, physiotherapy and occupational therapy.
It became increasingly clear that the complexity of this patient group, especially with regard to late-effects care post-haematopoietic stem cell transplant (HSCT), required a multidisciplinary team (MDT) approach as per the international standards for haematopoietic cellular therapy (Foundation for the Accreditation of Cellular Therapy and Joint Accreditation Committee ISCT and EBMT, 2021), with clear treatment pathways to guide management. This led to the implementation of a two-monthly cardiorespiratory MDT with specialist input, a quarterly TYA transplant allied healthcare professional MDT, including the youth support worker and representation from the charity Young Lives vs Cancer, and completion of a late-effects summary and care plan for each young person. The purpose of this document is to not only empower the young person, but also to educate and inform their primary care providers, including their GP. The benefits of these changes has been to streamline patient management, and to ensure that all the healthcare needs of the TYA patients are addressed.
As identified in the Blueprint of Care (Smith et al, 2016), good outcomes for an individual patient should not focus solely on improving mortality and morbidity, but also on improving the young person's quality of life and their ability to progress through the developmental milestones towards adulthood. This is especially important in the context of increasing survival rates post-haematopoietic stem-cell transplant, with an increasing focus now placed on survivorship and quality of life. It is therefore vital to consider the young person's holistic wellbeing, particularly since over the past couple of years our patients have faced the dual impact of a cancer diagnosis and living through a pandemic, placing additional stressors on their mental health. The initial focus has been on establishing the cardiorespiratory MDT, due to the significant cardiorespiratory toxicities experienced by patients (which include anthracycline-induced cardiotoxicity, pneumonitis due to total body irradiation used in transplant conditioning and lung graft versus host disease). However, the aim is to expand and build relationships with other key specialties, including gastroenterology and endocrinology. A recent service evaluation highlighted that, although 100% of the 20 patients polled reported experiencing psychosexual problems post-transplant, only two or three said that they had been offered an opportunity to explore this with clinicians. The findings of this evaluation led to the current pilot of a drop-in clinic with the Trust sexual therapist, alongside the TYA transplant clinic. Initial response to the drop-in clinic has been very positive and the next steps include building a business case to support funding of the role of sexual therapist.
Patient pathways
Once in the role, the author realised that further training was required to optimise the value of the role to the TYA transplant patient and their experience of care. This prompted the author to complete the advanced clinical assessment and prescribing competency, as already mentioned. Although not a prerequisite for the CNS role, this has enabled further streamlining of the patient pathway, such that patients within the TYA transplant clinic are stratified into either nurse-led or consultant-led care. The benefit of this approach has been a significant reduction in waiting times for patients, and increased capacity for consultants to oversee the care of more complex patients. Dedicated clinic codes for the nurse-led and consultant-led appointments have ensured appropriate costing of care, thus demonstrating financial sustainability of the changes implemented, and enabled audit of the clinic in terms of numbers of patients reviewed by the consultant or CNS, and the time of appointments.
The focus of this article has been primarily on outpatient care. However, an integral part of the author's role is also to support inpatient care by attending ward rounds and providing support to junior medical staff, in addition to providing as psychosocial support for patients and their relatives, and delivering teaching sessions to clinicians.
Conclusion
Effective workforce planning in the NHS should ensure that appropriate staff with the relevant skills are in place in order to ensure delivery of high-quality care, which should also apply to TYA service provision. The role of the TYA stem-cell transplant CNS arguably addresses this need. In addition, addressing inequalities in service provision across the UK is one of the key findings of the Young Voices report from the Teenage Cancer Trust (2019), which emphasises the need to duplicate effective service models across different settings.
The author now plans to conduct a service evaluation of the role of the TYA stem-cell transplant CNS in order to provide an evidence base that can be shared with other transplant centres, and used to present a business case for role continuity, given that historically specialist services have often been funded by the charitable sector as is the case in the author's Trust. A current gap in service provision includes support for young related donors of TYA patients as for most, although an opportunity to help a loved one, it can create complex emotions including guilt and anxiety, and provision of a donor advocate for allograft donors who are minors is a FACT-JACIE (2021) standard. In addition, as demonstrated through completion of the patient experience questionnaires, increased access to a TYA CNS benefited patient care in terms of increased CNS availability, provision of care in an age-appropriate environment and reduction in the burden of hospital appointments by 50% through provision of late effects care within the transplant clinic. In order to ensure equity of service provision across TYA cancer patients, there is arguably a case for a dedicated TYA CNS for the different specialties as is the case for TYA stem cell transplant patients. However, as discussed in this article whereas benefits of the role have been demonstrated, future workforce planning needs to demonstrate sustainability and consider cross-cover/additional support roles for periods of leave and/or sickness, to ensure role continuity.
KEY POINTS
- Delivery of age-appropriate care requires a holistic approach flexible to the needs of the individual
- Increased youth representation in service development adds value to successful provision of quality care within teenage and young adult cancer care
- Upskilling of the specialist cancer nurse workforce can lead to stratified care that improves the patient pathway
- Further research is required to address the paucity of evidence to guide optimal service provision for teenagers and young adults with cancer
CPD reflective questions
- Is enhancing skills of the clinical nurse specialist workforce within your department a potential option to improve the patient pathway?
- How are the needs of teenage and young adult cancer patients met within your department and is there any scope for improvement?
- How can young peoples' voices have increased representation within the patient and public involvement initiatives within your workplace?