Chronic and Recurrent Urinary Tract Infection Priority Setting Partnership

Urinary tract infections (UTIs) are among the most common infections treated in primary care in the UK, affecting millions of people annually. UTIs can be experienced by anyone at any life stage.  UTIs can be recurrent, which is classed as two UTIs within 6 months in the UK, or another definition is three UTIs in one year. UTIs can also become chronic, with daily debilitating symptoms causing a high physical and emotional toll. UTIs are also one of the most common causes of sepsis, which can be fatal.

See FAQs below for more information on the definitions.

Background and Aims

The overall aim of the project is to identify the unanswered questions about chronic and recurrent UTIs from patient, carer and clinical perspectives and then prioritise those that patients, carers and clinicians agree are the most important for research to address. To do this, we are working with AMR Action UK who have partnered with the James Lind Alliance (JLA), a respected organisation that facilitates patient and clinician collaboration to guide research priorities, to complete a Priority Setting Partnership (PSP). This partnership brings together people who live, or have lived, with a chronic or recurrent UTI, and healthcare professionals who care for them to contribute their ideas to shape the direction of future research.

The scope of the chronic and recurrent UTI PSP is:

• Children and adults affected by recurrent or chronic urinary tract infection
• Diagnosis of recurrent and chronic UTI
• Treatments for recurrent and chronic for UTI

The Priority Setting Partnership

The partnership was initiated and is funded by AMR Action UK. We are working with AMR Action UK and Bladder Health UK to deliver this important project.

The partnership focuses on bringing together people who live with, or have lived with, chronic and recurrent UTIs, their families and those who care for them. The project is overseen by a steering group of people with lived experience and healthcare professionals who are committed to treating each other as equals in the process and being inclusive throughout.

The priorities identified by the PSP will shape the future research agenda for chronic and recurrent UTIs, addressing the critical questions that matter most to patients, carers, and clinicians, and improving care and outcomes for those affected.

The James Lind Alliance

The James Lind Alliance (JLA) believes that research on the effects of treatments often overlooks the shared interests of patients, carers and clinicians. As a result, questions that they all consider important are not addressed and many areas of potentially important research are therefore neglected.

The JLA method, described in the JLA Guidebook, and the short animation below, is designed to change the way research funding is granted, and to raise awareness of research questions (or evidence uncertainties) which are of direct relevance and potential benefit to patients and the clinicians who treat them.

Administration and Partners

This project is being led by Emma Dennett, PSP Lead, and PSP Information Specialist Kristina Staley at AMR Action UK. The project is supported by Capres Turner, PSP Coordinator at AMR Action UK and guided by Jo Watson, Adviser for the James Lind Alliance.

How to get involved

To be notified of when the survey launches, please email psp@AMR-Action-UK.org. We will also announce the survey launch on social media.

FAQs

The steering group felt it was important to agree some definitions to use when talking about chronic and recurrent UTIs.

What is a urinary tract infection?

Urinary tract infections (UTI), are infections in the tubes that allow urine to pass out of the body after being produced in the kidneys. UTIs can occur in the bladder (known as cystitis, lower UTI), urethra (known as urethritis, lower UTI) or kidneys (known as kidney infection, or upper urinary tract infection or pyelonephritis).

Symptoms of a UTI may include pain or a burning sensation when peeing (dysuria), constant pain in the tummy or lower back, needing to pee more often than usual (day or night or both) and/or more urgently, cloudy urine, blood in urine, high or low temperature. It may also be difficult to start peeing (voiding)–particularly in recurrent and chronic UTI.

Children with UTI may appear generally unwell, have pain in their tummy, lower back and legs, and those who are toilet trained may become incontinent. Children may also develop behavioural and emotional symptoms due to the pain. In older, frail people or those with a urinary catheter, symptoms may also include changes in behaviours, including confusion or falls, incontinence and shaking or shivering.

What is a recurrent UTI?

Recurrent UTIs occur when a person recovers from a UTI but experiences repeated episodes over time, disrupting their quality of life. People experiencing two or more UTIs in six months, or three or more in a year, are considered to have recurrent UTI.

What is a chronic UTI?

Chronic UTIs occur when a person experiences persistent, daily, symptoms, including pain, lasting longer than 6 months, although chronic UTI often persist for many years. People with chronic UTI may experience acute exacerbations on top of daily symptoms. People may have a chronic UTI because their infection has not been properly diagnosed and treated, or their infection may have become treatment resistant. One of the big issues is that people with a chronic UTI can test negative for infection and be dismissed by the health service.

How are UTIs diagnosed?

UTIs are diagnosed by understanding a person’s symptoms, taking a history and completing a physical examination (to inform diagnosis and exclude other diseases). Urine tests are often used by GPs, but they are not always reliable.

Complicated UTI

People can experience one-off UTIs because of several complicating factors. There are various complicating risk factors for UTI including:

• Device-related (e.g. catheter, urostomy)
• Following surgery (e.g. gender affirming surgery, prostatectomy, any surgery on urinary tract)
• Infections due to an immune-compromised state (e.g. steroid use, post-chemotherapy, diabetes, elderly population, HIV)
• Infections in patients with impaired renal function, dialysis or anuria.
• Structural or functional problem with the genitourinary tract, e.g. obstruction, hydronephrosis, renal tract calculi, colovesical fistula.
• Presence of an underlying disease
• Pregnancy
• Prostatitis

Please note that complicated UTI is not the focus on this priority setting project, but people with chronic or recurrent UTI may experience UTI related to these.

Treatment failure

Treatment failure occurs when UTIs do not respond to treatment – either during treatment (recrudescence), relapse (when a treatment is initially successful but comes back after a period of time), or due to antimicrobial resistance (either the bacteria acquires resistance, or the microbe cannot be killed due to a physical reason such as cell wall impermeability).

Who is affected by UTI?

Anyone can be affected by a UTI, and we want this PSP to be broad and inclusive of everyone who experiences chronic or recurrent UTI. UTI is most common in children and adults with female anatomy because it is easier for bacteria to transfer from the anus to the urinary tract which is a common way that UTIs begin. Chronic and recurrent UTIs can be equally debilitating for children, men, or anyone who experiences them. People who live in care homes who experience UTI may be misdiagnosed if their symptoms are incorrectly attributed to mental decline.