Helping optimise primary care support during transition from children’s hospice care
| ISRCTN | ISRCTN75964234 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN75964234 |
| IRAS number | 334486 |
| Secondary identifying numbers | CPMS 58619, NIHR159019 |
- Submission date
- 24/07/2025
- Registration date
- 08/09/2025
- Last edited
- 08/09/2025
- Recruitment status
- Recruiting
- Overall study status
- Ongoing
- Condition category
- Other
Plain English summary of protocol
Background and study aims
There are over 86,000 children and young people in England living with conditions that will shorten their lives. Many of these young people are supported by children’s hospices. In the past, children’s hospices often continued to care for young people into adulthood. But this is no longer possible because more young people are living longer and the number of people needing care is growing. Now, as they become adults, young people must move from children’s hospice care to adult healthcare services. Although access to palliative care is now a human right in the UK, young people often do not receive the same level of care as children or older adults. General Practitioners (GPs) play a key role in providing good care at the end of life, but most are not involved in helping young people move from children’s to adult services. This study aims to develop a set of resources, called a toolbox, to help GPs become more involved in supporting young people with life-limiting conditions during this transition.
Who can participate?
Young people aged 14 years or older with a life-limiting condition who have used children’s hospice services and are approaching, going through, or have recently gone through the move to adult services can take part. Parents or carers of these young people can also take part, including those whose child has died in the last five years. Healthcare professionals, including GPs and hospice staff who support young people during this transition, can also participate.
What does the study involve?
Participants will be invited to take part in interviews to share their experiences and views. These interviews will help the research team understand what information GPs need and how best to support them. Young people, families, GPs, and hospice staff will work together to co-design the toolbox. The toolbox will include resources for patients, GPs, and children’s hospices. The study will also test how well the toolbox works in real-life settings with a group of 24 young people who are currently moving from children’s to adult services.
What are the possible benefits and risks of participating?
There is no payment for taking part. Participation will be a valuable and much appreciated addition to improving care. We hope what we learn will improve the experience of young people and families in the future. Taking part will give participants the opportunity for their views and experiences to be heard. It is possible that talking about experiences may be upsetting. If this happens, we will make some suggestions who the participant might like to talk with about this. If during an interview or workshop a participant tells us about something that makes us think someone is at risk of serious harm, we will contact an appropriate person for support
Where is the study run from?
University of Leeds (UK)
When is the study starting and how long is it expected to run for?
September 2024 to August 2027
Who is funding the study?
National Institute for Health and Care Research (NIHR) (UK).
Who is the main contact?
Prof. Lucy Ziegler, l.e.ziegler@leeds.ac.uk
Dr Emma Chapman, E.J.Chapman@leeds.ac.uk
Contact information
Principal Investigator
Academic Unit of Palliative Care
Leeds Institute of Health Sciences
University of Leeds
Level 10
Worsley Building
Clarendon Way
Leeds
LS2 9NL
United Kingdom
 ORCID ID |
0000-0001-9563-5014 |
|---|---|
| l.e.ziegler@leeds.ac.uk |
Public, Scientific
Academic Unit of Palliative Care
Leeds Institute of Health Sciences
University of Leeds
Level 10
Worsley Building
Clarendon Way
Leeds
LS2 9NL
United Kingdom
| ORCID ID |
0000-0003-2859-2020 |
|---|---|
| Phone | +44 1133430863 |
| e.j.chapman@leeds.ac.uk |
Study information
| Study design | Observational qualitative |
|---|---|
| Primary study design | Observational |
| Secondary study design | Qualitative study |
| Study setting(s) | GP practice, Hospice |
| Study type | Other |
| Participant information sheet | 47726 HOPSCOTCH PIS HCPs V2.0 01.07.25.pdf |
| Scientific title | Helping Optimise Primary Care Support During Transition from Children’s Hospice Care |
| Study acronym | HOPSCOTCH |
| Study objectives | HOPSCOTCH aims to develop a toolbox of resources, with modules for patients, primary care and children’s hospices, to enhance the involvement of GP practices in the care of young people with life-limiting conditions particularly during transition from children's hospice care. |
| Ethics approval(s) |
Approved 02/07/2025, Wales REC 3 (Castlebridge 4, 15-19 Cowbridge Road East, Cardiff, CF14 4XW, United Kingdom; +44 2922 940963; Wales.REC3@wales.nhs.uk), ref: 25/WA/0181 |
| Health condition(s) or problem(s) studied | Primary care support during transition from children’s hospice care |
| Intervention | The HOPSCOTCH study comprises three workstreams (WS), using an adapted Experience-Based Co-Design (EBCD) approach to develop and assess a primary care intervention supporting transitions from children’s to adult hospice services. WS1: Young People and Family Perspectives WS1 explores transition experiences from the viewpoint of young people and their families/carers. Eighteen participants will be recruited from 12 partner children’s hospices, representing three transition stages: pre-, during, and post-transition. Part 1: Participants will engage in in-depth, audio-recorded interviews (up to 90 minutes), conducted in-person or via Microsoft Teams/telephone. Interviews follow a narrative and semi-structured format, focusing on primary care’s role. Demographic data will be collected via anonymised forms. Part 2: Interviewees will be invited to a feedback workshop (online or in-person), using a ‘catalyst film’ derived from interview recordings to prompt emotional mapping discussions. Participants will identify and prioritise 4–5 key areas for improvement. Part 3: Selected participants will join a joint co-design event with healthcare professionals. Part 4: Volunteers may participate in small online co-development sessions to refine intervention components. WS2: Healthcare Professional Perspectives WS2 gathers insights from 18 clinicians: six each from general practice, adult palliative care, and paediatric palliative care. Part 1: Interviews (up to 60 minutes) will explore transition processes, primary care engagement, and training needs. Conducted via Teams, telephone, or in-person, recordings will be transcribed and anonymised. Part 2: A feedback workshop will present findings and the catalyst film from WS1. Documentary analysis of non-identifiable transition documents will support discussion. Participants will prioritise 4–5 feasible improvement areas. Part 3: Professionals will join young people and families in a joint co-design event. Part 4: Clinicians may join small co-development sessions to refine specific intervention elements. WS3: Feasibility Testing WS3 will assess the feasibility of implementing the HOPSCOTCH intervention in clinical practice. Details will be submitted in a future ethics application. Co-Design Event and Outputs: A one-day online co-design event will bring together all stakeholders. The morning session will present findings and facilitate process mapping to develop a logic model. Afternoon sessions will use this model to identify priorities and co-create the HOPSCOTCH toolbox. Key Outputs: 1. Logic Model: Defines optimal primary care support during transition, outlining roles of young people, families, and professionals. 2. HOPSCOTCH Toolbox Modules: -Young Person & Family Module: Guidance on engaging with GP teams. -Primary Care Module: Consultation templates, training links, and engagement strategies. -Specialist Palliative Care Module: Tools to enhance communication and information flow to primary care. |
| Intervention type | Other |
| Primary outcome measure | 1. Semi-structured interviews will be used to understand and explore the experience of transitioning from children’s hospice support, from the perspectives of young people with life limiting conditions and their families. 2. Semi-structured interviews will be used to understand and explore the experience of supporting transition of young people with life limiting conditions and their families, from the perspectives of healthcare professionals working in primary care and adult or children’s hospices. 3. Reflexive thematic analysis will be used to draw out key themes from the data and identify opportunities to enhance engagement of general practice in the coordination and delivery of care to young people as they transition from children’s hospices. 4. Experience-based co-design (EBCD) inspired methodology will be used to co-design a complex intervention (the HOPSCOTCH toolbox) to facilitate this enhanced engagement. |
| Secondary outcome measures | There are no secondary outcome measures |
| Overall study start date | 01/09/2024 |
| Completion date | 31/08/2027 |
Eligibility
| Participant type(s) | Patient, Health professional, Carer, Other |
|---|---|
| Age group | Mixed |
| Lower age limit | 14 Years |
| Sex | Both |
| Target number of participants | 36 |
| Key inclusion criteria | Young people: 1. Young person with a life limiting condition 2. Minimum 14 years of age 3. Previous or current user of children’s hospice services 4. The young person must be approaching transition to adult services, in the process of transitioning to adult services or have transitioned to adult services within the last 5 years 5. Capacity (with support if required) to understand information and consent either in written or verbal form 6. Capacity and willingness to take part in a discussion about their experience Parent or carer: 1. Parent or carer from the same household of a young person with a life limiting condition who is approaching transition to adult services, in the process of transitioning to adult services or has transitioned to adult services within the previous 5 years 2. Minimum 18 years of age 3. Parent or carer of a young person who is a previous or current user of children’s hospice services 4. Family or carers may still participate in the study if their young person has died within the previous 5 years and experienced any of the above stages of transition prior to death 5. Capacity to understand information and consent either in written or verbal form 6. Capacity and willingness to take part in a discussion about their experience Healthcare professional: 1. Minimum 18 years of age 2. Work in primary care, adult hospice or children's hospice 3. Hospice staff has a role or responsibility in supporting transition 4. Capacity to understand information and consent either in written or verbal form 5. Capacity and willingness to take part in a discussion about their experience |
| Key exclusion criteria | Young people: 1. Transition to adult services occurred more than 5 years ago 2. Under 14 years of age 3. Young people who are too unwell (as judged by the healthcare professional making initial contact) will not be approached for interview, but their family members may still participate if they wish to 4. Young people who are unable to participate in a conversational interview for any reason related to their condition will not be approached for interview, but their family members may participate if they wish to Parent or carer: 1. Transition to adult services occurred more than 5 years ago 2. Unable to provide informed consent Healthcare professionals: 1. None |
| Date of first enrolment | 01/09/2025 |
| Date of final enrolment | 31/08/2026 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centres
Barnet
EN5 4NP
United Kingdom
Newcastle upon Tyne
NE3 1EE
United Kingdom
Hampton
TW12 3RA
United Kingdom
Oxford
OX4 1RW
United Kingdom
Milton
Cambridge
CB24 6AB
United Kingdom
Redlands Road
Fremington
Barnstaple
EX31 2PZ
United Kingdom
Grove Road
Clifford
Wetherby
LS23 6TX
United Kingdom
Leeds
LS17 6QD
United Kingdom
Bradford
BD3 9LE
United Kingdom
Worsley Building, Clarendon Way
Leeds
LS2 9NL
United Kingdom
Sponsor information
University/education
Woodhouse Lane
Leeds
LS2 9JT
England
United Kingdom
| Phone | +44 113 3437587 |
|---|---|
| governance-ethics@leeds.ac.uk | |
| Website | https://www.leeds.ac.uk |
"ROR" |
https://ror.org/024mrxd33 |
Funders
Funder type
Government
No information available
Results and Publications
| Intention to publish date | |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Data sharing statement to be made available at a later date |
| Publication and dissemination plan | Planned publication in a peer-reviewed journal |
| IPD sharing plan | The current data sharing plans for this study are unknown and will be available at a later date |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Study website | 24/07/2025 | No | No | ||
| Participant information sheet | Healthcare Professionals version 2.0 |
01/07/2025 | 28/07/2025 | No | Yes |
| Participant information sheet | Patient Carers version 2.0 |
01/07/2025 | 28/07/2025 | No | Yes |
| Participant information sheet | Young persons version 2.0 |
01/07/2025 | 28/07/2025 | No | Yes |
| Participant information sheet | Younger persons version 2.0 |
01/07/2025 | 28/07/2025 | No | Yes |
| Protocol file | version 2.0 | 01/07/2025 | 28/07/2025 | No | No |
Additional files
- 47726 HOPSCOTCH Protocol V2.0 01.07.25.pdf
- 47726 HOPSCOTCH Young person PIS V2.0 01.07.25.pdf
- Young persons
- 47726 HOPSCOTCH PIS Young person (Younger) V2.0 01.07.25.pdf
- Younger persons
- 47726 HOPSCOTCH PIS Parent Carers V2.0 01.07.25.pdf
- Patient Carers
- 47726 HOPSCOTCH PIS HCPs V2.0 01.07.25.pdf
- Healthcare Professionals
Editorial Notes
24/07/2025: Trial's existence confirmed by the National Institute for Health and Care Research (NIHR) (UK).
