Abstract
Background In many countries, children under the age of 16 are seen in both primary and secondary care. In the UK and Ireland however, there’s a network of tertiary specialist centres known as Principal Treatment Centres (PTCs). These are very important as they coordinate and designate the most qualified hospital for children and young people (CYP) with cancer, making sure they are given the best treatment possible.
Each PTCs share care with local hospitals through Paediatric Oncology Shared Care Units (POSCU), enabling children to be supported and treated closer to home. Furthermore, every CYP with cancer are offered a Key Worker, their main point of contact who provides support throughout their convalescence and ensures the appropriate co-ordination of care.
An oncology lead specialist nurse and her team provide different types of services, such as central lines care at home, taking blood, educating schools and reducing any barriers or concerns, to social work like providing support for daily living, giving advice on housing or financial issues.
Objectives Our aim is to demonstrate the beneficial impact of these services on patients and their families by analysing the satisfaction and support provided to them.
Methods Two surveys on patient and parent’s satisfaction in paediatric oncology services at local POSCU were conducted, with questionnaires given to all families on active treatment during these periods. The first survey was done in 2016 with 55% responses and results were compared with two national and regional existing surveys. The second survey was done in 2020 with 54% responses.
Results The importance of POSCU is evidenced in both surveys. In the 2020 survey, all participants felt a sense of trust/confidence with the paediatric community nurses/consultants; and in the 2016 survey, all participants believed the care of the CCN was very satisfactory. Both survey results show the significance of a shared care plan and the effect it has on patient satisfaction.
A negative feature of any shared care plan is miscommunication between the PTC and local hospital; however, the survey responses in 2020 showed that no one felt the communication between the local and PTC was below satisfactory (with 71% definitely satisfied). This was also supported in the 2016 survey where 91% felt communication between the POSCU and PTC was well/very well. In the 2020 survey a patient explained that ‘communications between local & PTC […] have been excellent’, further emphasising good communication between the two centres. Additionally, POSCU is valued by patients’ families, being described in the 2020 survey as ‘the best treatment from […] extraordinary Paediatric Consultant, and from all the Community Nurses’.
Conclusions To conclude, both these surveys showed the beneficial impact of POSCU in the care of CYP with cancer and their families but also the satisfaction of the support brought by these services. This study shows the importance of having these services in place to help reduce these miscommunications and support locally.
Based on these results, POSCU services should be further analysed and considered in other areas and countries, promising a great beneficial impact on children and their families.
