Pelvic Radiation Disease – introducing a unique Best Practice Pathway
Lisa Durrant,
United Kingdom
PD-0079
Abstract
Pelvic Radiation Disease – introducing a unique Best Practice Pathway
Authors: Lisa Durrant1, Emma Hallam2, Ben Sacks3, Sara Faithfull4, Lesley Smith3
1Somerset NHS Foundation Trust, Beacon Radiotherapy, Taunton, United Kingdom; 2Nottingham University Hospitals NHS Trust, Radiotherapy Depatment, Nottingham, United Kingdom; 3Pelvic Radiation Disease Association, Trustee, London, United Kingdom; 4Pelvic Radiation Disease Association, Medical Advisory Panel, London, United Kingdom
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Purpose or Objective
Pelvic radiation disease (PRD) is one or more chronic symptoms that can affect people who have previously had pelvic radiotherapy. Complex issues can occur from 3 months to years after treatment. PRD continues to be a problem despite refinements in radiotherapy technique and delivery. An estimated 100,000 people in the UK are living with PRD [1].
Any pelvic organ or system can develop PRD (Fig 1), impacting on psychological and sexual wellbeing [2]. People seek help for PRD but fail to get support due to a lack of services and knowledge by health care professionals (HCPs)[3]. Gastrointestinal PRD researchers advocate systematic investigation and management [4], but guidance for other pelvic anatomy is lacking. Information and pathways are required to improve all aspects of PRD.
Material and Methods
A PRD charity (PRDA) steering group identified UK experts, defined as a having a clinical specialism or published academic background relating to PRD. Evidence was gathered for PRD symptoms, prevalence and current evidence-based practice. Consensus was gained for symptom assessment, guidance was collated for self-management or treatments. Information on service models, quality standards, auditing and education were added to guide HCPs and policy makers. The document was peer-reviewed by professional societies, charities and patient volunteers with PRD for endorsement.
Results
The PRD Best Practice Pathway (BPP) launched online at the PRDA Conference (1/10/22) with 340 registrants (Pelvic Radiation Disease Association - YouTube). It was commended as an “ambitious multi-disciplinary document that distils a huge amount of expertise into a concise readable format.” Each section describes a scale of symptoms from those managed with lifestyle changes or common medicines (eg. urinary frequency, mild pain, constipation) to complex problems requiring specialist care (rectal bleeding, urinary strictures, complex pain, bone fractures and atherosclerosis).
Early feedback from clinicians was positive, “It really does cover everything you need to help validate and manage pelvic late effects. I just wish this had been available when I started managing late effects in 2013”.
From a patient reviewer, PRD 14+ years, “it has provided new knowledge and confidence for me to better express my problems…It will give me and others confidence to seek help and hopefully be understood”.
The reach and impact of the pathway requires evaluation, the PRDA welcomes feedback www.prda.org.uk/contact
Conclusion
The BPP is a unique document for anyone involved with or affected by PRD. It also highlights further research is needed to define the true scale of PRD and to improve care and education.
The BPP aims to raise the profile of PRD. A steering group member stated, “The PRD BPP document isn’t one to sit on the shelf, it’s an action document, it’s intention is to improve patient care, symptoms, quality of life and experiences”.
Please download, use and share the PRD BPP. PRD Best Practice Pathway - PRDA