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To get involved or find out more please get in touch with Astrid Janssens

CHUMS: Children’s oUtcome Measurement Study. This project is about measuring the health of children and young people with neurological conditions.

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To get involved or find out more please get in touch with Astrid Janssens

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  1. CHUMS: Children’s oUtcome Measurement Study This project is about measuring the health of children and young people with neurological conditions. Based on this research we will make recommendations about which generic (not condition-specific), multidimensional (asking about different life-domains) questionnaires could be used by the NHS. • What is a PROM ?Patient Reported Outcome Measure • Patient reported: by children, young people and/or their parents • Outcome: snapshot of a child’s health in the past week or month • Measure: answering a questionnaire FEB‘12 Systematic Review WHAT: We will find all the questionnaires used to measure the health of children & young people (C&YP) HOW: Exhaustive search for publications that mention children’s health questionnaires. Assessing the evidence for how good these measures are. Interviews & focus groups WHO: Children & young people with neurodisability and separately with parents WHAT: A focus group is a group discussion; interviews are one-to-one. We will ask about how the NHS tries to improve the health of CY&P with neurodisability. We will also talk about how health questionnaires could be designed to encourage CY&P to want to complete them. • Survey with children’s health professionals • WHO: Health professionals such as paediatricians, therapists, surgeons etc. • WHAT: A Delphi survey is a method to reach consensus by asking people to rate their level of agreement with statements. The process can be repeated until consensus is reached. APR‘12 JUN ‘12 • How will families get involved in this project? • A parent helped us when we applied for funding and named on the application. • Parents are involved in managing the research project. Parents helped to design the information sheets for families, and refine questions for the focus groups and interviews. • Parents will help us interpret what we find, and help us to explain the findings in an understandable form for C&YP and parents OCT/NOV ‘12 MAY/JUNE ‘13 Bringing the three streams of work together to make recommendations MAY/JUNE ‘13 To get involved or find out more please get in touch with Astrid Janssens Email: pencru@exeter.ac.ukTelephone: 01392722968/01 Website: www.pencru.org This study is supported by the National Institute for Health Research (NIHR) Health Services & Delivery Research Programme. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

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