The end of active treatment is known to be a period of high stress in young people’s cancer timeline but little is known about young people’s experiences in this transition phase. This study aimed to understand the experiences and needs of young people at the end of treatment (EoT), how these are currently being met, and how best to provide support to young people.
This was a multi-stage, mixed methods study, conducted from January to December 2018, exploring the EoT experience from the perspectives of young people and healthcare professionals caring for them. This paper reports on the EoT experiences of young people (n = 11), all within 12 months of EoT, who participated in semi-structured telephone or face-to-face interviews. Interviews were transcribed and analysed using thematic analysis.
Three key themes emerged from the data relating to young people’s experience of ending active treatment: 1) Challenges with social reintegration; 2) Expectations versus the reality of ending treatment; 3) Sudden loss of the safe “bubble” of treatment. Some young people reported feeling isolated from their peers after they finished treatment, feeling they no longer belonged to previous peer groups. Young people reported challenges in managing both their own expectations and expectations of others about how they would feel at the end of treatment, versus the reality of how they actually felt both physically and psychosocially. They did not expect to experience onerous ongoing physical issues including pain, nausea and fatigue. Additionally, young people experienced a range of conflicting emotions: excitement, happiness, nerves, fear, shock, surprise and uncertainty. They described realising they were no longer regularly surrounded by healthcare professionals, and feared the loss of the familiar routine of regular hospital visits.
End of treatment is a transition that results in changed relationships, routines, assumptions and roles. Young people often lacked awareness of and were under prepared for this. Having a better understanding of the unpredictable and ongoing nature of both physical and psychosocial issues they may face at the EoT would be beneficial, as would reassurance that challenges during this transition period are both acceptable and expected.
University College London Hospitals NHS Foundation Trust.
Teenage Cancer Trust.
All authors have declared no conflicts of interest.
Patients with metastatic cancer frequently require Peripherally Inserted Central Catheters (PICCs) to deliver chemotherapy in the ambulatory setting. PICCs have a higher incidence of Venous Thrombo-Embolism (VTE), infections, need to be removed when patients have a treatment break and also require weekly flushes. They also interfere with daily activities such as bathing and can preclude patients from swimming or going on long holidays. At the time, TIVAD’s were not available in our trust. To reduce line complications and improve quality of life I was keen to develop a service at my hospital for patients with metastatic cancer. The process took 2 years to develop from initial idea to inserting the first TIVAD, however I am now pleased to report that I have gained competency, inserted over 30 TIVADs in the first 3 months and am now training up another nurse.
I was keen to explore the potential to introduce a nurse-led TIVAD service that wouldn’t need any form of x-ray guidance using ECG and Ultrasound technology. I contacted a vascular access company who were able to supply 1:1 clinical training until competency was achieved. I also contacted a local charity who agreed to raise money for the ultrasound machine; we also used legacies donated by 2 patient’s families who had left donations to be spent on developing the service as they had felt their quality of life had been impacted upon by frequent PICC insertions.
A total of 30 patients have had TIVADs inserted and we are now running independent nurse-led lists every week to ensure that all patients with metastatic cancer can have a TIVAD inserted. Plans are afoot to formally audit the service and patients receiving treatment for metastatic cancer have already been able to swim and benefit from not having to attend for weekly flushes. There has been 1 VTE and no infections in the TIVAD group, compared to the previous 30 PICC insertions where there were 5 episodes of VTE and 3 line infections over the same period of time.
The introduction of a nurse-led TIVAD service is already delivering significant improvements for the quality of life of patients with metastatic cancer. Patients are no longer having multiple PICCs and we have already seen a reduction in VTE and infections.
The author.
Has not received any funding.
The author has declared no conflicts of interest.