CompletedInterventional

How does patient-initiated follow-up compare to standard care follow-up for people living with inflammatory arthritis?

Living with inflammatory arthritis often involves attending hospital check-ups every 6 to 12 months, even when you feel completely well. Many people find these routine trips inconvenient, and they can place extra pressure on NHS clinics. The NHS is testing a system called Patient-Initiated Follow-Up (PIFU). Under this plan, you do not have pre-set appointments. Instead, you contact your rheumatology team directly to book a visit if you have a flare-up or need advice. This study compares PIFU with standard routine care across the UK. Half of the participants will keep their regular scheduled check-ups, while the other half will move to PIFU. Over two years, researchers will track participants' health, wellbeing, and hospital costs. Everyone will have clinic visits at the start and end of the study, alongside regular surveys to complete from home.

At a glance

Status

Completed

Sponsor

University of Oxford

Enrolment target

438

Start

21 Mar 2025

Estimated completion

31 Jan 2026

Inflammatory arthritis

What is this study about?

Living with inflammatory arthritis—such as rheumatoid arthritis, psoriatic arthritis, or axial spondyloarthritis—usually requires long-term care. For years, the standard approach has been attending routine clinic reviews every 6 to 12 months. However, when your condition is settled, travelling to the hospital for a check-up can feel unnecessary and disruptive to your day.

To address this, the NHS is introducing Patient-Initiated Follow-Up, or PIFU. With PIFU, you are not given fixed routine dates. Instead, you are given direct instructions on how to contact your specialist team whenever you experience a flare-up, notice new symptoms, or need advice on your medication. This aims to ensure you get care exactly when you need it.

Although PIFU is designed to be more flexible, doctors need solid evidence to know if it is just as safe and effective as traditional check-ups. Coordinated by the University of Oxford, this study aims to see whether PIFU protects your quality of life, keeps your joints healthy, and helps the NHS make the best use of its time and resources.

Key takeaways

The study compares routine hospital check-ups with patient-requested appointments (PIFU).
Open to adults with stable inflammatory arthritis diagnosed at least two years ago.
Participants are randomly chosen to either keep routine visits or move to PIFU.
Your regular arthritis medicines will not be changed by taking part.
The trial lasts two years and includes completing surveys about your health and wellbeing.

Who may be eligible?

This trial is open to adults aged 18 and older who have been diagnosed with inflammatory arthritis for at least two years. Your condition must be stable, meaning your symptoms have been well-managed on your current arthritis medicine—or without medicine—for at least the past three months, with no plans to change your treatment.

You must feel able to contact your rheumatology clinic if your symptoms worsen, and your hospital consultant must agree that this style of care is safe for you. You cannot take part if you have ever used a patient-initiated follow-up system for your arthritis before.

Additionally, you cannot join if you are pregnant, planning to start a family soon, currently receiving active cancer therapy (such as chemotherapy or radiotherapy), or receiving end-of-life care.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I am aged 18 or older and live in the UK.
I have had inflammatory arthritis for at least two years.
My arthritis has been stable on the same treatment (or no treatment) for the last three months.
I have never used a Patient-Initiated Follow-Up (PIFU) service before.
I feel comfortable contacting my rheumatology team if I need advice or an appointment.
I am not pregnant, planning a pregnancy, or receiving active cancer treatment.

Answer every question to see your result.

What does participation involve?

If you take part, you will be put into one of two groups by random chance. One group will continue with standard care, attending routine appointments every 6 to 12 months. The other group will switch to PIFU, where you will not have scheduled visits but will be shown how to book an appointment whenever you need support. Your existing arthritis medications will remain the same.

Regardless of your group, you will visit the hospital clinic at the beginning of the study and again after 24 months for a routine joint assessment and surveys. You will also be sent short questionnaires to complete at home at 1 week, and then at 6, 12, and 18 months. Some participants may be invited to take part in an interview to share their views on PIFU. In total, your participation will last for two years.

Potential risks and benefits

Taking part may not directly benefit your health, but you will help researchers understand the best way to run arthritis services across the NHS. If you are placed in the PIFU group, you may save time by avoiding unnecessary hospital visits, though you will need to keep track of your own symptoms and get in touch if you feel worse. Your rheumatology team will always remain available to support you if you experience a flare-up. Joining is entirely voluntary, and you can leave the study at any point without it affecting your usual NHS treatment.

Locations (30)

John Radcliffe Hospital
Approximate
Oxford, England
Queens Medical Centre
Approximate
Nottingham, England
Lancashire & South Cumbria NHS Foundation Trust
City only
Preston, England
Derriford Hospital
Approximate
Plymouth, England
Belfast City Hospital
Approximate
Belfast, Northern Ireland
Royal Berkshire Hospital
Unverified
Reading, England
City Hospital
Unverified
Birmingham, England
York Hospital
Unverified
York, England
The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust
Unverified
Oswestry, England
Royal Devon University Healthcare NHS Foundation Trust
Unverified
Exeter, England
Royal United Hospitals Bath NHS Foundation Trust
Unverified
Bath, England
Kings College Hospital
Unverified
London, England

Common questions

What does PIFU mean?

PIFU stands for Patient-Initiated Follow-Up. It means you contact your clinic to arrange an appointment when you need one, rather than having regular pre-booked check-ups.

Will my arthritis medications be stopped or changed?

No. The study is only looking at how appointments are scheduled. Your doctor will continue to prescribe and review your usual medications.

What should I do if my joints flare up during the study?

If you are in the PIFU group, you will have a clear guide and direct contact details to reach your rheumatology team quickly for advice or an urgent appointment.

Can I pick which group I join?

No. A computer programme assigns participants to either standard care or PIFU by chance. This makes sure the study results are fair and reliable.

How long will I be involved in the study?

Your participation will last for 24 months (two years), including clinic checks at the start and finish, and regular home questionnaires.

How to find out more

Laura Coates

tailor@ndorms.ox.ac.uk +44 (0)1865 613739 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.