Empowering young patients to self-manage cancer treatment through ambulatory care

Summary

Ambulatory care for teenagers and young adults (TYA) was introduced at University College London Hospital as an alternative, mobile approach to the delivery of cancer treatments that would traditionally be undertaken within the inpatient setting, including high dose chemotherapy and stem cell transplantation. This model of care is facilitated by portable infusion pumps and features family self-monitoring facilities alongside overnight stays in a residential setting or a patient’s own home. Ambulatory care in this context aims to normalise daily life during cancer treatment as much as possible and care is shaped around the TYA and their family.

Challenge

An ambulatory care (AC) service for adult cancer patients launched in London 10 years ago. This new initiative, the first of its kind in the UK for young people with cancer, was driven by a commitment to normalise lengthy cancer treatment within a family-centred context. This is the largest teen and young adult (TYA) cancer service in the UK, supported by the Teenage Cancer Trust. 

Prior to AC, TYA patients were treated in an age-appropriate inpatient ward. The idea of AC was to encourage the TYAs to be involved in the decision making about their own treatment, to meet their own health care requirements and receive their treatment in an environment where independence, an essential adolescent development task, is promoted. 

Objectives

The project has three main objectives. 

Firstly, the operational development of the AC model. This was the immediate priority, as the service had to provide safe mobile cancer treatment. The existing adult AC model was therefore adapted to meet the needs of the TYA population, with the input of patients and their families. 

Secondly, the development of a participatory action research group to facilitate the growth and development of the service, to document learning undertaken and generate evidence for practice. 

The final objective was to explore the impact of ambulatory care on the TYA lifestyle and sense of wellbeing, by allowing patients and families to work collaboratively with health professionals to discuss the important aspects of care and treatment.

Solution

A working group known as STEER (Service, Transformation, Evaluation, Research) was set up, to work alongside the operational development of the AC service. STEER is nurse-led and supported by an academic supervisor from London South Bank University.

The STEER group worked with patients, families and clinical staff to provide a model for AC. It identified challenges and considered the implications of the new service. The team conducted ‘concerns, claims and issues’ workshops and a ‘window of opportunity’ activity to encourage open feedback from stakeholders. 

The data collected was analysed and recommendations put in place. It also gave a new insight into the culture of the nursing team and thus informed strategy for practice change. 

The project was approved by the NHS R&D department as service improvement, and permission granted to work with patients and families. This included having parent and patient members of the core STEER group.

Results

The operational change was managed through STEER. The team identified eligibility criteria for AC, risk assessing treatment protocols to transition standard chemotherapy regimes to mobile regimes. Self-management was considered carefully to ensure it promoted independence without creating burdens for patients or families. 

The team devised written information and trained nurses to educate patients and families. They worked with staff at the ‘home from home’ where patients would stay, creating a TYA-appropriate environment. 

The patient and carer STEER group members give insight into the AC experience and facilitate the engagement of other service users in focus groups and video diaries. Success has been measured through patient feedback. 

AC has made inpatient beds available for more complex and high dependency treatments.

Learnings

It was difficult to predict the impact of the AC service on TYA patients, so the STEER group was invaluable. STEER allowed the service to be developed alongside the experiences of the TYA patients and their parents. 

The AC model’s shift towards more young person- and family-orientated care raised significant questions about risk, responsibility and support. 

At times some of the TYA patients were difficult to engage with through focus groups, so multi-modal research methods worked well, with questionnaires and video diaries working better for some patients. Using separate groups for patients and parents helped identify trends, as they spoke more freely without their personal opinions being overheard.

Evaluation

Since it went live in 2012, the service has had over 400 admissions of TYA patients. AC has proved to be cost-effective – the cost per ambulatory patient per day for nursing care is a third of the cost for inpatient nursing. 

TYA patients have expressed how much they value spending time as a family away from the ward environment. AC allows life to continue as normally as possible, while empowering the young person. 

This initiative could be adapted to other services. It currently operates in the adult cancer division and other TYA cancer centres have approached the service with interest. The Teenage Cancer Trust asked for the service to be presented at the International Teenage Cancer Trust conference 2014.
QiC Oncology Highly Commended
Patient involvement
Empowering young patients to self-manage cancer treatment through ambulatory care
by University College London Hospital

Contacts

Laura Brown
Job title: Ward sister
Place of work: University College London Hospital
Email: laura.brown@uclh.nhs.uk
Telephone: 02034471854