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Who is involved?

Theme: CLAHRC - Person-Centred Care
Status: Live

Why did we do this review?

Patient Reported Outcome Measures (PROMs) are used to assess health and changes in health in the NHS. Bringing together PROM scores for groups of patients provides a way of seeing whether services, treatments and therapies are improving health outcomes over time. It is vital therefore that PROMs are tested well and are an accurate way of measuring health outcomes. We wanted to  find all the  studies that tested  the use of PROMs in children, and identify which  PROMs work best for children with neurodisability.


How did we do this review?

The research was a systematic review. This brings together the results of all studies addressing the same research question. First we identified all the currently available PROMs that could be used to measure child health and wellbeing. Then we reviewed all the studies that tested the PROMs in children. Next we looked at the evidence from studies that tested these PROMs specifically in groups of children with neurodisability conditions.


What did we find?

  • We found 35 PROMs that aim to measure health or health related quality of life in children. 12 of these PROMs were tested  in children with neurodisability.

  • The most common conditions in which these 12 PROMs were tested were cerebral palsy, epilepsy, ADHD, autism and traumatic brain injury.

  • The Pediatric Quality of Life (PedsQL) and Child Health Questionnaire (CHQ) were tested more than any other  PROM but evidence from studies suggests that neither are strong measures.

  • We found that the PROM with the most evidence for being a good measure of health in children with neurodisability was one called DISABKIDS.

  • KIDSCREEN and Child Health Utility (CHU-9D) were also found to be better than others however they had not been tested enough in children with neurodisability.

  • There was not enough evidence to  find out overall how well PROMs work in children with neurodisability, especially for assessing meaningful changes in health.

Quality of the research and cautionary notes

The studies we found varied in quality, with newer studies reported more completely and of better quality than older studies. Overall, there was not enough evidence to  find out how well PROMs work in children with neurodisability especially in assessing meaningful changes in health. Even the questionnaires that were found to work best in groups of children with neurodisability - DISABKIDS, KIDSCREEN and Child Health Utility (CHU-9D) - have not been tested thoroughly enough.

None of the existing PROMs assess all the key areas of health identified by young people with neurodisability, parents and clinicians. These key areas include communication, emotional wellbeing, pain, sleep, mobility, self-care, independence, mental health,  community and social life, behaviour, toileting and safety.


What next?

This work shows that the PROMs we found need to be tested more in children with neurodisability, particularly to find out what changes in the scores from the PROMs means about changes to their health.

The fact that none of the existing PROMs assess all of the key areas of health as identified by the children, parents and clinicians means that a new questionnaire could be warranted. However, it would be useful to research whether PROMs that only measure one or two outcomes (e.g. pain or sleep) are acceptable to children with neurodisability and their parents before starting the development of a new PROM.


Futher Information

This project was completed in summer 2013. The full report was made available in the NHS Library in June 2014.

A paper describing the development of a definition of neurodisability has been published. You can find the link to the academic paper here; a plain language summary is available here.

A paper reporting on the qualitative work with children and young people with neurodisability and parents has been published by BMJ Open and is available here. A plain language summary is also available here.

A paper describing the series of surveys to identify which aspects of health professionals target in terms of improving outcomes for children and young people with neurodisabiity has been published by Archives of Disease in Childhood and is available here. The plain language summary of this report is available here.

The findings of this study were presented at the SW regional meeting of the British Academy of Childhood Disability (BACD) & British Association of Community Child Health (BACCH) in October 2013, at a paediatric departmental meeting at the Royal Devon & Exeter Hospital in February 2014, at the BACD Annual Scientific Meeting in Birmingham in April 2014, and have been invited to present at the BACCH annual conference in Cardiff in September 2014.

This project was funded by the National Institute for Health Research Health Services and Delivery Research (NIHR HS&DR) programme (project number 10/2002/16). For more information click here. The views and opinions expressed are those of the authors and do not necessarily reflect those of the HS&DR programme, NIHR, NHS or the Department of Health.

Read more on the Peninsula Cerebra Research Unit (PenCRU) website.

Read a printable version of this summary here.


Others Involved

Dr Astrid Janssens, Dr Val Shilling, Prof. Colin Green, Dr Jo Thompson-Coon, Morwenna Rogers