HOPSCOTCH Helping Optimise Primary Care Support During Transition From Children’s Hospice Care

Research Questions

What do young people with life limiting conditions and health care professionals think are the key components of an intervention to support primary care involvement in transition to adult services and how feasible is the intervention in practice? Background

There are more than 86000 children and young people living with a condition that will shorten their life in England. [1] . Until recently the care provided by children’s hospices often started in infancy and extended into adulthood. This model of care is no longer possible due to the rapidly growing population of young people with life limiting conditions and their increased life expectancy. [2,3] As young people approach adulthood they are required to leave children’s hospices and move into the care of adult healthcare services.

In 2022 an amendment to the human rights bill made access to palliative care a human right. Despite this young people with life limiting conditions are facing increasing inequities in access to palliative care and do not have the same access as children or older adults with life limiting conditions.[4] The role of the General Practitioner (GP) is critical to providing quality end of life care for this population [5-9] their involvement reduces emergency hospital admissions and enables person centred care.[6] Despite this, most GPs are not involved in any aspect of transition planning [5] Barriers to involvement include GP's lack knowledge, time and poor interprofessional communication. [5-11]

Aims and Objectives

Aim: To develop and feasibility test a complex intervention to facilitate engagement of general practitioners in the coordination and delivery of care to young people with life limiting conditions and their families. Objectives:

1. Identify opportunities to enhance engagement between children’s hospices and GPs. We will do this through reviewing information currently shared between hospices and GPs and by undertaking interviews with GPs, hospice staff and young people with LLC and their families to understand what GPs really want/need to know and in what format.

2. Identify opportunities for GPs to engage with YP with LLC and their family that is feasible and fits within service constraints. Utilising opportunities related to existing service requirements for PCNs (‘identify patients with complex and problematic polypharmacy for medication review’) may be one such approach.

3. Using an experience-based co-design with young people with LLC and their families alongside GPs and hospice care staff we will develop a ‘toolbox’ of resources to support effective engagement of Primary Care services in the care of young people with LLC.

4. Explore the feasibility of the toolbox in clinical practice in a prospective cohort of young people transitioning from children’s hospice services. Methods:

The study design has been guided by the UK Medical Research Council (MRC) complex intervention framework. The intervention development is theoretically driven by Experience Based Co-Design (EBCD) and the Behaviour Change Wheel (BCW). Timelines for delivery

This 3-year study includes ongoing dissemination to key audiences (young people, parents, service providers, commissioners) via knowledge exchange events, web-based platforms, social media and clinical/academic forums. Anticipated impact and dissemination

The results will inform service delivery to reduce inequalities and optimise the use of finite resources to maximise impact.