How collaboration is making a big impact in the field of pelvic radiotherapy late effects

Figure 1

A key enabler for these connections is using a common language. However, ‘Pelvic Radiation Disease’ is not yet accepted in medical terminology, and even for single-organ effects there is no agreement on naming symptoms and conditions (2).

Set up in 2012 by people affected by PRD, the Pelvic Radiation Disease Association (PRDA) is a small UK patient support charity, unique in being wholly dedicated to late effects of cancer treatment.

PRDA has three main goals – to support people affected by PRD, to raise awareness of PRD and to work with the NHS to improve services.

The charity on its own is too small to instigate service developments but is a powerful platform to both listen to and amplify the patient voice. It is able to influence, encourage and, above all, provide and promote useful resources that facilitate change to happen at an individual, local and national level.

It is now working increasingly closely with professionals, associations and other charities to sustain and expand this important collaborative approach. 

This is possible thanks to the involvement of those who, despite the limited resources of charities and the NHS, are determined to make a difference for people’s quality of life. 

‘Late Effects’ is a field of healthcare that can frequently feel difficult, complex and isolating for patients and professionals alike. However, considerable momentum is building, with PRDA playing a pivotal role alongside major charities such as Macmillan, Jo’s Cervical Cancer Trust and Maggie’s.

This article seeks to illustrate what is being achieved for people affected by PRD drawing on the perspectives of four individuals - a person with PRD, two Therapeutic Radiographers who specialise in late effects management and a trustee of PRDA.

Maria Dullaghan is a kitchen and bathroom designer who lives in Wales. She received radiotherapy and brachytherapy in spring 2011 as part of her treatment for cervical cancer, in addition to chemotherapy and surgery. Since having the all-clear in May 2011, Maria was living a full and active life but in 2013 she started to notice some changes to her body.

‘I wasn’t aware of the impacts’ 

"I was plunged into the menopause after having surgery,” she said, “but I was prepared for this as my doctors had spoken to me extensively and had a plan for hormone replacement therapy ready. What I wasn't made aware of were the impacts of other late effects. It was the time of skinny jeans and I could feel that my right leg felt larger and more solid than my left." 

Lymph nodes removed from Maria’s groin had led to swelling and numb skin in her legs and a diagnosis of lymphoedema is still pending. 

Then, 2017 brought another late effect, this time on her bowel function. Maria added: "This seemed to come on quite suddenly compared to the lymphoedema. My bowel movements became more frequent, much looser, and I realised I wasn't having much warning as to when I needed to go. After a few weeks of this, I went to see my GP who referred me to a dietitian, thinking I was suffering with irritable bowel syndrome." 

During this dietetics appointment, Maria first heard the term Pelvic Radiation Disease. Deciding to do some research of her own, she came across the PRDA website. Here she was able to understand more about PRD and learn more about her current symptoms, as well as being made aware of other potential symptoms of PRD. 

She gained comfort through reading PRDA’s testimonies from other people's experiences of life with PRD: "I felt like I wasn't alone or that I was falling to pieces. Knowing that what I was going through was all linked together made me feel calmer in a way and ready to look out for any other changes in my body that may occur. If I had been informed of PRD either before or during my treatment, I could have prepared myself more effectively in advance.” 

Recently, Maria received a PRDA Out and About Toolkit (3). Co-designed with people affected by PRD, it contains a RADAR key (4), three wallet-sized ‘toilet cards’ explaining that the holder needs urgent access to a bathroom, a sunflower lanyard (denoting hidden disabilities), a small bag for a change of underwear or clothes and useful information from PRDA, such as websites to help locate a public toilet and links to self-care products that may come in handy.

Maria now feels more confident when she ventures out: "I have used my toilet card several times already. Shop staff are so helpful once they see the information on the card and most ask if there is anything else they can help with. I could have had so many free cups of tea!" 

Using the information and links provided by PRDA, Maria has also been able to talk in depth with her GP about PRD, educating each other along the way, and they agree that it is highly likely her symptoms fall under this umbrella term. 

Going forward, Maria is self-managing her bowel issues with dietitian-advised dietary modifications and finds light exercise helps with the swelling in her leg. Having previously been a media volunteer for a cervical cancer charity, Maria is hoping her skills and experience can be of benefit to other people with PRD. 

She would like to help raise as much awareness as possible among patients, their families and health professionals, so that they can be better prepared than she was. 

Maria’s experience demonstrates how important even a small charity such as PRDA can be in providing significant benefits to people whose quality of life is impacted by late effects many years after radiotherapy.

Starting with the dietitian who used the term Pelvic Radiation Disease, and because PRDA understands the importance of information for patients and professionals, and resources to self-manage (plus quick access to toilets), Maria has gained the confidence to be an equal partner with her healthcare team in her journey to better manage her PRD symptoms for years to come.

Samantha Bostock is a radiotherapy late effects radiographer, which means she sees individuals who are living with debilitating symptoms following pelvic radiotherapy.

While most people experience few or no radiotherapy late effects and go on to lead a full life, it is increasingly recognised that some people’s ability to function or carry out their usual activities is severely impacted. Radiotherapy late effects services are gradually being put in place to support these people. 

Within Samantha’s service, the priority is always what matters most to the person – this could be bowel or bladder function, continuing to work, sexual or intimate relationships or a mixture of concerns.

These will require careful clinical management. Signposting people to the PRDA website is an important aspect of late effects care because the information and support can be invaluable to helping people feel more informed, less alone, and more in control of their situation. 

PRDA is constantly looking for ways to improve its support, so when Samantha was approached in 2022 to help with their new ‘Let’s Talk’ course (5), she was keen to be involved.

She found it was useful to have a healthcare professional to field questions and also beneficial for her to hear and witness the impact PRD has had on those people attending. 

“Working in partnership with PRDA gives me the opportunity to see first-hand how their work has a positive impact on both the person and the healthcare professional,” she said.

“I soon saw that the Let’s Talk course allowed people to be open and honest, in an environment where they met others with similar experiences. This can be incredibly empowering to them.” 

Being facilitated by a trusted organisation such as PRDA, and supported by late effects professionals, the course provides people with a positive environment for learning more about PRD symptoms and how to gain help. 

People may go on to be part of the PRDA Online Community (5) where sharing and mutual support is a lifeline to people who have often felt poorly understood by their healthcare team.

Samantha also appreciates how PRDA supports healthcare professionals by publishing guidance on how to practically manage PRD, with the PRD Best Practice Pathway (7) and a guide to managing some PRD symptoms using dietary adjustments (8). 

She said: “Using the Best Practice Pathway enables those of us working in radiotherapy late effects to provide standardised care. I can act with confidence by following the PRDA documents, knowing I am offering the best care and advice. This helps me ensure the right investigations are carried out, which means we can create a joint action plan for reducing the impact of symptoms and discussing management options with other healthcare professionals.”

Lisa Durrant, Macmillan consultant radiographer for late effects and a member of PRDA’s Medical Advisory Panel, was closely involved in the development of the Pelvic Radiation Disease Best Practice Pathway. 

Lisa is highly motivated by the need to raise national standards in management of late effects of radiotherapy: “The gold standard for managing complex health problems such as PRD are clinical guidelines which aim to improve the quality and care of services, reduce variation in practice and inform healthcare providers of a condition and how to manage it (9). Guidelines are often developed by national bodies such as The National Institute for Health and Care Excellence (NICE), by royal colleges or by clinical speciality associations and ideally pull together independent professionals, lay members and stakeholders to derive evidence-based guidance. It’s acknowledged that radiotherapy can cause late effects but there was no indication that these bodies were doing anything on PRD.”

Motivated by the growing number of people living longer after cancer treatment, and the push for action from professionals such as Lisa and Samantha, and people affected by PRD such as Maria, PRDA set out to produce a useful reference tool for clinical decision-making for health services in the UK. 

Despite having very limited resources, PRDA is in a unique cross-cutting position covering different cancer types, professional disciplines, specialties from outside oncology, and perspectives from diverse experts, including experts by experience via its Patient Advisory Group. This enables it to inspire a collaborative approach, meaning the Best Practice Pathway is endorsed by professional associations as well as other cancer charities.

A steering group was convened in 2019 representing professionals working with people with PRD, academics with a publication record in PRD, experts in guideline production and PRDA representatives.

UK experts were identified to develop each section of the Best Practice Pathway, defined as those providing a PRD clinical service, with a relevant research portfolio or with expertise in a symptom of PRD. 

The experts provided up-to-date information on the prevalence and incidence of each aspect of PRD (figure 1), a step-wise approach to assessment, identification and management of PRD and information to refer, escalate or signpost. Lisa was on the Best Practice Pathway Steering Group and was not surprised by the lack of good quality of evidence for management of radiotherapy late effects.

She said: “We found that systems in primary or secondary care rarely records PRD, so the scale and burden of late effects on people and on the NHS remains unquantified.

“We also found that the lack of comprehensive holistic PRD guidance in the past has led to islands of expertise in a few centres where professionals happen to have an interest in PRD but rarely have the opportunity to meet and collaborate on research.” 

The Steering Group was concerned that care for people with PRD is not equitable or evidence-based but they could not do anything about the current lack of good quality evidence. 

PRDA has therefore produced a ‘pathway’ document which is a bridge between formal guidance and expert opinion. 

With PRD still being relatively poorly understood, and patients presenting in any healthcare setting, the document was designed to be accessible to professionals at all levels in all specialisms and settings. 

So, how can the recognition and management of PRD make progress if there are no gold standards, systemic reviews, meta-analyses or robust evidence to develop guidance?

The ‘Practical management of the gastrointestinal (GI) symptoms of Pelvic Radiation Disease’ (10) is the current benchmark for people with PRD with its algorithmic approach, but only covers GI symptoms and is nearly 10 years old. Lisa is determined that the more that can be done to standardise PRD care, terminology and data collection, the more this will open the door to better research evidence being developed to support future gold standard guidance. 

In the meantime, it is becoming clear that the PRD Best Practice Pathway document is being used to build confidence amongst professionals across oncology and beyond to support development of local care pathways and move towards a standardised service model.

Lesley Smith, a PRDA trustee, reflects how the charity draws upon the inspiration and expertise of a diverse range of people who are passionate to see a reduced impact from PRD on quality of life. 

“PRDA’s contribution to the progress in care of radiotherapy late effects in the UK is to facilitate synergy amongst the many dedicated people who want to make a difference,” Lesley said.

“I think above all, PRDA really listens to the needs of people with PRD, but also to what professionals need to help them do the best for their patients. PRDA’s resources such as the Best Practice Pathway, diet guide, Out and About Toolkit and Let’s Talk course are built on that listening. It is very exciting to see the momentum building in the radiotherapy community, supported by the Society of Radiographers’ ever-expanding Special Interest Group on Late Effects (11). As a Best Practice Pathway steering group member stated, the document ‘isn’t one to sit on the shelf, it’s an action document, its intention is to improve patient care, symptoms, quality of life and experiences’. We are truly thankful to everyone who is taking action and making real change happen to the quality of life of people affected by PRD.”

Please download, use and share the PRD Best Practice Pathway (7).

References 

1.  Pelvic Radiation Disease Association.  What is Pelvic Radiation Disease (PRD)? Available at https://www.prda.org.uk/what-is-pelvic-radiation-disease-prd/ (Accessed 12 January 2024) 
2.  Smith, L., Sacks, B., Steele, S., Andreyev, J. What do gastroenterology professionals call gastrointestinal (GI) problems after pelvic radiotherapy? Gut, 2022, 71 (Suppl 1) A170-A171. 
3. Pelvic Radiation Disease Association. Out and About Toolkit. Available at https://www.prda.org.uk/out-and-about-toolkit/ (Accessed 12 January 2024)
4. National Key Scheme. What is the NKS? Available at http://www.nks.co.uk/index.php (Accessed 12 January 2024)
5. Pelvic Radiation Disease Association. Let's Talk. Available at https://www.prda.org.uk/lets-talk/ (Accessed 12 January 2024)
6. HealthUnlocked. Pelvic Radiation Disease Association. Available at https://healthunlocked.com/prda (Accessed 12 January 2024)
7. Pelvic Radiation Disease Association. PRD Best Practice Pathway. Available at https://www.prda.org.uk/prd-best-practice-pathway/  (Accessed 12 January 2024) 
8. Pelvic Radiation Disease Association. Diet, nutrition and PRD. Available at https://www.prda.org.uk/wp-content/uploads/2023/04/Diet-nutrition-and-PRD-PDF.pdf (Accessed 12 January 2024)
9. Andreyev, H.J.N., Muls, A.C., Norton, C., Ralph, C., Watson, L., Shaw, C. and Lindsay, J.O. Guidance: the practical management of the gastrointestinal symptoms of pelvic radiation disease. Frontline Gastroenterology, 2015. 6(1): 53-72. 
10.  Andreyev, H.J.N., Muls, A.C., Norton, C., Ralph, C., Watson, L., Shaw, C. and Lindsay, J.O. Guidance: the practical management of the gastrointestinal symptoms of pelvic radiation disease. Frontline Gastroenterology, 2015. 6(1): 53-72. 
11. Society of Radiographers. Radiotherapy Late Effects Special Interest Group. Available athttps://www.sor.org/about/get-involved/special-interest-groups/radiotherapy-late-effect-sig. (Accessed 12 January 2024)