Children's Health oUtcome Measurement Study (CHUMS)

Patient-reported outcome measures (PROMs) are standard questionnaires that assess health at a single point in time. The NHS uses PROMs to see if it is working effectively. PROMs are also used in research and clinical audits. This research sought to identify which PROMs would be most appropriate to assess the effectiveness of NHS care for children affected by neurodisability.

We conducted a systematic review to identify and critically appraise the evidence regarding PROMs for measuring children's health. Parents and children from the Council for Disabled Children's networks participated in focus groups and interviews around the country. Hundreds of health professionals working with children with neurodisability in different parts of the country participated in an online survey.

The information that was collected from these three streams of research was then used to consider whether any existing PROMs assessed the core outcomes valued by families and targeted by health professionals.

This project was completed in summer 2013. We presented the findings at meetings of the British Academy of Childhood Disability and the British Association of Community Child Health. The project was funded by the National Institute for Health Research Health Services and Delivery Research programme (10/2002/16). The full final report was published in the NIHR Library in 2014. 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.

Outputs

Janssens, A., Rogers, M., Gumm, R., Jenkinson, C., Tennant, A., Logan, S. and Morris, C. (2015). Measurement properties of multidimensional patient-reported outcome measures in neurodisability: a systematic review of evaluation studies. Developmental Medicine & Child Neurology. doi: 10.1111/dmcn.12982 

Janssens, A., Thompson-Coon, J., Rogers, M., Allen, K., Green, C., Jenkinson, C., Tennant, A., Logan, S., Morris, C. (2015). A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part I: Descriptive Characteristics. Value in Health, 18(2), 315-333.

Janssens, A., Rogers, M., Thompson Coon, J., Allen, K., Green, C., Jenkinson, C., Tennant, A., Logan, S., Morris, C. (2015). A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part II: Evaluation of Psychometric Performance of English-Language Versions in a General Population. Value in Health, 18(2), 334-345.

Morris, C., Janssens, A., Shilling, V., Allard, A., Fellows, A., Tomlinson, R., William, J., Thompson Coon, J., Rogers, M., Beresford, B., Green, C., Jenkinson, C., Tennant, A., Logan, S. (2015). Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures. Health and Quality of Life Outcomes 2015; 13:87  doi:10.1186/s12955-015-0284-7

Morris C, Janssens A, Allard A, Thompson-Coon J, Shillling V, Tomlinson R, et al. Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting. Health Serv Deliv Res 2014;2(15)

Janssens, A., Williams, J., Tomlinson, R., Logan, S., Morris, C.(2014). Health outcomes for children with neurodisability: what do professionals regard as primary targets?. Arch Dis Child. doi: 10.1136/archdischild-2013-305803.

Allard A, Fellowes A, Shilling V, Janssens A, Beresford B, Morris C. (2014). Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents. Bmj Open 4:e004611.

Morris C, Janssens A, Tomlinson R, Williams J, Logan S. (2013) Towards a definition of neurodisability: a Delphi survey. Developmental Medicine and Child Neurology, 55(12), 1103-1108.

We have also produced plain language summaries for each paper.

If you have any questions on the project, please get in touch.

Stages of Research Cycle