Title: Young people's experience of receiving inpatient cancer treatment via an ambulatory pathway: Community-Based Participatory Research to inform the commissioning of services
Funder: Health Education England

Abstract: BackgroundApproximately 2400 teenage and young adult (TYA) patients are diagnosed with cancer annually in the UK. In 2012 a new kind of NHS service for TYA patients was developed at University College London Hospitals called 'ambulatory care' (AC), offering patients the choice to receive cancer treatments that would usually be given on a hospital ward on an outpatient basis. AC aims to support a degree of normality during cancer treatment and reduce the negative psychosocial effects associated with prolonged inpatient stays. There is a discernible gap in our understanding of the projected and actual benefits of AC. In particular it remains unclear the extent to which young people want and are able to engage in the aspects of self-care and self-monitoring required. There are four overarching research questions: What is the rationale that underpins ambulatory care? How do stakeholders: young people, their carers/companions and staff, experience ambulatory care? What are the crucial factors in successful delivery of ambulatory care? Can participatory research methods engage young people and elucidate care needs?This study is decision-orientated; its goal being to inform decisions, identify areas for improvement and support action. It is designed as an action evaluation, to provide evidence for professional and patient audiences and those who commission services.Methods This action evaluation is phased over three years and draws on the related field of action research. It prioritises Community-Based Participatory Research (CBPR) to iteratively describe, explain and build understanding of AC experiences from the perspectives of multiple stakeholders: staff (n=10-15), young people (n=15-20) and companions (n=10-15). The study design employs qualitative research methods (documentary analysis, semi-structured and walking interviews, and video diaries). CBPR engages stakeholders as partners in all stages of inquiry; young people (n=4), companions (n=2) and staff (n=4) will be recruited to a 'Community-of-Practice', and will meet 6 times to help contribute to data collection, analysis, build explanatory frameworks and inform dissemination. Patient and public involvement An award from the Research Design Service London enabled me to interact with 7 patients and 3 parents about this research idea during August 2017. Young people said research was needed, especially into the experiences of families to more fully understand actual benefits, particularly when considered alongside potential burden on young people, their carers/companions. These conversations helped inform the research questions and study design, including its participatory and qualitative nature.Impact, dissemination and outputs This study will have a tangible impact on patients by: providing evidence to support the commissioning and development of AC services based on patient-defined needs; defining the key elements required of TYA AC care in order to deliver age-appropriate care; the development of a best practice guideline and resources to guide commissioners, TYAs and professionals.Consideration has also been given to mobilising knowledge during and after the study. A substantial contribution to knowledge in the field of both AC and TYA cancer care is anticipated. The research findings may also be transferable internationally to other areas of young people's healthcare.

Lay abstract: About 2400 teenagers and young adults (TYAs) are diagnosed with cancer every year in the UK. In 2012 a new kind of NHS service was developed at University College London Hospitals (UCLH) for TYA patients called 'ambulatory care' (AC). It offers the choice to receive cancer treatments that would usually be given on a hospital ward as an outpatient. AC is made possible with portable infusion pumps and through teaching young people to undertake parts of their care themselves. They stay close to the hospital, often in a hotel with a parent/companion and visit the AC unit each day to be seen by a nurse or doctor and to receive treatment. What is the aim of this study?This three-year study seeks to understand the first-hand experience of receiving ambulatory care. It seeks to find out if adaptations or changes are needed to meet the support needs of young people (aged 16-24) and their families. Doing this now is important, as AC may be soon adopted by other young people's cancer services in the UK. We already know that the service is safe. We also know that young people like receiving care away from the hospital because they can eat, rest and spend time as they choose. Health professionals think AC helps young people feel more independent and live a more normal life during treatment, something known to be a characteristic of good cancer care. We do not know enough about AC however to know or be confident of the actual benefits, particularly when considered alongside potential burden on young people, their carers/companions. Young people have helped design this study; they told us what is realistic for someone taking part. Some of those consulted mentioned feeling too tired to take care of themselves when in AC, and that it was their parent staying with them who did the care. While they would choose AC again they said that more research was needed, especially to understand the full impact on their family. How will this be undertaken? One of the key objectives is to understand how far we are delivering what is intended of AC. The first step is to review academic literature on the subject. The next involves scrutinising policies and documents to describe how the service came into being. We will then ask 10-15 UCLH cancer staff what they think are the reasons for AC, and what it achieves. Next, around 15-20 young people and 10-15 family/friend/companions will be interviewed about their experiences. Walking interviews, audio/video diaries and focus groups are included to help do this. The aim is to understand the theory and reality of ambulatory care, and to make changes or suggest solutions to improve the AC experience where it is needed. The design of this study incorporates what is in academic terms called 'action research'; specifically, an approach called Community-Based Participatory Research (CBPR). The intention is it will lead to an improvement in the way AC is delivered during the study itself. The aim of CBPR is to take patient involvement to the next level by including young people at each stage of the research and this means as well as being participants, some young people alongside carers and staff will be part of a group who meet at set intervals to help interview, analyse data and make sense of the findings. Study outputs In depth knowledge of AC will be generated that can be accessed by the public and professionals. Its main output is a) development of AC at UCLH; b) a best practice guideline to inform how services are developed nationally.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: CANCER AND NEOPLASMS