EQ-5D-Y-5L and PedsQL CEW Digital Patient Engagement

In partnership with NIHR, ENHANCE, NHS England

PRO-FORMA

Overview
Prescribing Services Ltd (PSL) have been centrally contracted by NHSE to support the CEW patient dashboard. As part of this arrangement, PSL is working with the ENHANCE research team (funded by NIHR) to support the distribution of two assessments which will provide valuable information about patient-reported outcomes.. 

About EQ-5D-Y-5L

EQ-5D-Y-5L is a questionnaire with five questions that is designed to allow children and adolescents to better communicate about their health-related quality of life.

EQ-5D-Y-5L covers the following topics:

  • Mobility

  • Looking after myself

  • Doing usual activities

  • Having pain or discomfort

  • Feeling worried, sad or unhappy.

Each question offers the option to give numeric responses ranging from 1 (no problems) to 5 (extreme problems, or cannot do). The combined digits will form a 5-digit number, or profile, that describes the patient’s health state.

About PedsQL

PedsQL is another health assessment that children and adolescents can complete to report on their health-related quality of life. The assessment contains 23 questions surrounding the following areas:

  • Physical functioning

  • Emotional functioning

  • Social functioning

  • School functioning

Each question can be answered with a numeric response ranging from 0 (never) to 4 (almost always). A score will be assigned based on these responses, with a higher score indicating a better quality of life.

Patient Engagement
Patients and their families will be able to complete this assessment through a digital support service. Prescribing Services Ltd is an accredited NHS service for digital patient engagement and has already received IG sign off for data integration with your NHS Trust.

If you choose ‘total digital engagement’ in the options below: Three weeks after their initial appointment, the patients and their families will receive a text that enables them to access an accredited secure online patient portal where they can consent to answering EQ-5D-Y-5L and PedsQL assessments in the form of questionnaires. Participating clinics should aim to upload all new patients within 3 weeks of their initial consultation. The questionnaires will be sent out to patients and their families upon their consent at the start of the programme, and then again 6 and 12 months afterwards. Patients and their families will also receive timely reminders to fill out the questionnaires if left unanswered. It is requested that both assessments are completed as this will provide important information about how the clinics are working for different families.

Data Collection
This platform is fully integrated into the CEW dashboard, which will display their questionnaire scores and answers. The data collected from the responses for these assessment tools will be used to support NIHR research.

A user guide on how to implement this service is available and additional online training can be offered where preferred.


If you would like your practice to participate, please complete the following form: