ImProving Persistent Pain for youth in Queensland (PIPPY)

Aim

The purpose of the project is to implement knowledge, education and standardisation activities for what services are available in Queensland to increase the capability and quality of care for CAYA living with persistent pain.

Benefits

• increase consumer awareness, understanding and knowledge of how pain is produced, persists and is managed, what services and resources are available and how to access, navigate and transition CAYA to services in a timely manner
• increase clinicians’ knowledge, skills, confidence and experience in providing best practice CAYA care to youth with persist pain
• increase connection to and support from a network of clinicians who provide clinical care to youth with pain, and improve the experience of coordinated care across specialties and sectors
• establish and embed CAYA persistent pain best practice care guidelines and principles in service and organisation planning and policy; fostering local CAYA champions to facilitate change
• increase healthcare professionals' knowledge and awareness of available services and resources for referrals and increase knowledge, skills and confidence to manage youth with persistent pain within their own services and disciplines
• highlight the impacts on patient outcomes and healthcare utilisation of engagement with a multidisciplinary pain management service for youth to inform broader health planning and budgetary decision.

Background

Children, adolescents and young adults (CAYA) are at greater risk of receiving inadequate and inappropriate care for their persistent pain because of limited access to public health services for youth requiring multidisciplinary approaches.  

The need to improve persistent pain service delivery to CAYA through standardisation of quality care, clearer referral pathways, the implementation of transition guidelines and enabling best practice principles into existing services that treat CAYA with persistent pain were identified in Queensland’s Persistent Pain Statewide Network  ‘Best Care Close to Home - Statewide Child and Youth Persistent Pain Strategy (2021)’.It also aligns with the recent focus on Adolescent and Young Adult (AYA) healthcare observed in Queensland.

Persistent pain in children, adolescents and young adults is a serious global health and economic problem, with care fragmented across and between primary, secondary and tertiary healthcare providers. Australian epidemiological data suggests 13% of 0-24year olds live with persistent pain, with at least 3% of the CAYA population experiencing moderate-severe and disabling pain. There is evidence that for up to 75% of youth living with persistent pain, pain and psychological disorders continue into adulthood with long-term consequences and costs for individual and the broader societal community. In 2020, the Statewide Persistent Pain Clinical Network identified that there was a need for more intensive multidisciplinary rehabilitation-oriented pain management services for CAYA,  with close to 50,000 young people in 2018 experiencing moderate-severe disabling pain in Queensland.

The current evidence base also makes it clear that in Australia and internationally there are insufficient services and trained providers to manage the demand. There is one paediatric persistent pain management service in the state, treating approximately 200 of the most complex pain patients per year from the paediatric and adolescent age groups. 'Adult' pain management services who see adolescents and young adults have treating healthcare professionals who do not usually have formal training in working with youth from a developmental and family systems based perspective, are low confidence with limited resources to manage the complex biopsychosocial issues with which these young people present. In addition, it has been identified nationally, and most recently in Queensland Health, that adolescent and young adult-focused healthcare is very limited for many youth and families with complex and chronic conditions (Clinical Senate, 2021), and time and resources is required to build effective Adolescent and Young Adult (AYA) care within the organisation in conjunction with youth consumers.

Outcomes

This project has achieved most deliverables over eight months and will continue to complete remaining deliverables of economic and outcomes evaluation at the end of 2022 and early 2023 to inform future capabilities.

Discussion

The success of the project will be determined by the production of the deliverables:

• production of referral and service navigation guidelines hosted online; with initial success evaluated through data analytics of usage and stakeholder surveys
• AYA care position statement and transition guidelines endorsed at the five Queensland Health adult teams providing specialist pain management care; evidence of implementation collated through stakeholder survey of agreed standardised implementation activities e.g., ‘AYA friendly environment’ marketing material, localised service planning sessions in the identified services
• outcomes report analysing participating services’ CAYA patient reported clinical outcomes and collated healthcare utilisation data through electronic persistent pain outcomes collaboration reporting and medical record review. Includes all six Queensland Health Persistent Pain Services and Gold Coast Paediatric Specialist Outpatient Service (Horizons)
• production of a website for healthcare professionals and consumers and associated awareness raising campaign (including six youth consumer videos and social media utilisation), evaluated via stakeholder survey and data analytics of early usage and engagement
• creation of an online youth persistent pain health provider directory to assist GPs, health practitioners, families and young consumers locate relevant service providers close to home
• delivery of in-reach education events and surveyed impact on knowledge, skills and confidence
• stakeholder surveys, pre and post education where possible, to evaluate the education initiatives – YiPPEE Youth Persistent Pain Education Day and Clinical Skills Paediatric Pain Workshop (Boston Children’s Hospital, Comfort Ability)  and in-reach education events
• a mixed methods approach will be undertaken to evaluate the project outcomes, utilising both quantitative and qualitative data sources.

Lessons learnt

All three initiation and planning milestones were met within the first two months of the project to the expected standard. Project deliverables were modified in month three of the project due to the sudden and emergent risk of COVID-19 on the project team, working group and key stakeholders’ ability to participate in project outputs. These modifications meant that several deliverables were scaled back, and timelines stretched to the end of the project, and into the second half of 2022 for several of the deliverables requiring outcome reports. There were no original project deliverables removed from the plan.

References

Agency of Clinical Innovation and Trapeze, Sydney Children’s Hospital Network (2014). Key principles for transition of young people from paediatric to adult healthcare. http://www.trapeze.org.au/sites/default/files/Transitional_Principles_Document.pdf

Children’s Health Queensland Hospital and Health Service (2018). Readiness to Transfer Checklist. https://www.childrens.health.qld.gov.au/wp-content/uploads/PDF/forms/readiness-to-transfer-checklist.pdf​

NSW Government (2014). Youth Friendly Checklist for Health Services.  https://www.health.nsw.gov.au/kidsfamilies/youth/Pages/youth-health-resource-kit.aspx​

Queensland Health (2021). Adolescent and Young Adult Care Position Statement. https://www.childrens.health.qld.gov.au/wp-content/uploads/PDF/qcycn/AYA-quality-care-position-statement.pdf

Queensland Health (2021). Best Care, Close to Home: Statewide Child and Youth Persistent Pain Strategy. Contact Queensland Persistent Pain Clinical Network

Queensland Health (2022). Optimising adolescent and young adult care in Queensland: A statewide strategy 2022-2027. https://www.childrens.health.qld.gov.au/wp-content/uploads/QCYCN-AYA-Strategy-Optimising-Adolescent-and-Young-Adult-Care.pdf

Queensland Health (2021). Queensland Clinical Senate Adolescent to young adult care: Doing better meeting report 2020. https://clinicalexcellence.qld.gov.au/sites/default/files/docs/clinical-senate/senate-meeting-report-Dec-2020.pdf

World Health Organisation and UNAID (2015). Global standards for quality health-care services for adolescents: A guide to implement a standards-driven approach to improve the quality of health care services for adolescents. https://apps.who.int/iris/handle/10665/183935

Further Reading

Persistent pain resources – for health professionals

Persistent pain management – for consumers

Persistent pain management services