Integrating electronic patient-reported health data into electronic patient records (EPR) in paediatric rheumatology clinics

The childhood health assessment questionnaire (CHAQ) is a patient-reported outcome measure (PROM). It forms part of the core set criteria for children and young people with juvenile idiopathic arthritis (JIA).

The CHAQ is routinely collected in paediatric rheumatology outpatient clinics.

Situation

Patients and parents completed the CHAQ on paper in the hospital waiting room.

This system frequently failed for administrative reasons. Even when it was completed, it was time-consuming to calculate the score and add to the EPR. This meant valuable PROM details were lost or not effectively acted on to facilitate and improve patient care.

Aspiration

The team at Alder Hey Children’s Hospital wanted a digital solution to enable patients or parents to complete the CHAQ before attending the clinic.

It also wanted the CHAQ data to integrate with the EPR.

Solution and impact

A digital CHAQ has been developed collaboratively by the Alder Hey information technology team and Aire Logic. It uses Aire Logic’s flexible digital forms engine, Forms4Health.

Since the digital CHAQ went live in March 2021, the team sends out approximately 500 text messages every month with a link to the CHAQ.

It receives back approximately 350 CHAQs every month which is a 70% response rate. This exceeds the team’s expectation and far exceeds the paper forms returns, which only had a 32% response rate.

Functionality

• Patients receive a text message with a link to a unique URL to complete the CHAQ on their mobile phone or other digital device.
• It’s a cloud-based service enabling patients to answer health questions which are then imported directly into their health record.
• The digital CHAQ calculates a total score and includes a visual analogue scale of the patient’s wellbeing and pain. These values integrate directly with the EPR for the relevant clinic visit, enabling vital PROM data to be accessible to the consultant before the appointment.
• Importantly, the answers to questions are imported into the patient’s EPR. This is linked to the outpatient appointment and this enables more focussed discussions between patient and consultant.
• This technology can also be used to build other PROMs in the speciality, and all other specialities.

Capabilities

Digital CHAQs allow the team to:

• import PROM data directly into the EPR
• improve patient care and disease outcomes

Digital CHAQs can be incorporated into other paediatric rheumatology sites’ EPR systems.

The next step of development is to enable teams to order the digital CHAQ in the same way they order a blood test. It can then be received and completed by patients as required.

The digital CHAQ will be incorporated into a wider digital dataset, ‘Capture-JIA’. This will collect data across other providers of paediatric rheumatology services around the UK to help improve JIA programmes.

Scope

• Digital CHAQs are used in a hospital clinical setting and to monitor patients at home.
• They are also used to remotely manage patients with JIA.

Key learning points

• Identify and protect time for clinical technology teams to develop digital tools and integrate them within the EPR.
• Technology teams need to work in close collaboration with clinical teams.
• Lessons learned from this work can be shared with other NHS providers across other speciality areas.
• Different PROMs are used in JIA and other diseases managed in paediatric rheumatology. The team hopes to develop and integrate additional PROMs in the future.
• Inequality of access to technology may disadvantage some patients. To reduce the risk of widening the inequality gap, clinicians can see in real-time if a digital CHAQ has been completed and integrated into the EPR. If not, a paper version is given to the patient.
• Regular feedback exercises and monitoring return rates help to understand the experience of patients receiving the digital CHAQ.

Key quotes

Feedback from healthcare professionals, patients and parents has been positive. It highlights that the new development has transformed the value of the digital CHAQ to support consultations.

Key contact

Dr Gavin Cleary, Consultant Paediatric Rheumatologist, Alder Hey Children’s Hospital

gavin.cleary@alderhey.nhs.uk

Cairen Ball, Strategic Account Director, Aire Logic

cairen.ball@airelogic.com