TY - BOOK PY - 2012 DA - 2012// TI - The NHS Outcomes Framework 2013/14 ID - ref1 ER - TY - STD TI - Fitzpatrick R: Patient-reported outcome measures and performance measurement. In Performance measurement for health system improvement: experiences, challenges and prospects. Edited by Smith PC, Mossialos E, Papanicolas I, Leatherman S: Cambridge University Press; 2009: Health Economics, Policy and Management]. ID - ref2 ER - TY - BOOK PY - 2009 DA - 2009// TI - Guidance for Industry: Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims PB - Department of Health and Human Services, Food and Drug Administration, Center for Drug Evaluation and Research CY - Rockville, MD ID - ref3 ER - TY - STD TI - National Institute for Health and Care Excellence: Guide to the methods of technology appraisal 2013. Available at http://www.nice.org.uk/article/pmg9/resources/non-guidance-guide-to-the-methods-of-technology-appraisal-2013-pdf [Last accessed: 23/09/2014]; 2013. UR - http://www.nice.org.uk/article/pmg9/resources/non-guidance-guide-to-the-methods-of-technology-appraisal-2013-pdf ID - ref4 ER - TY - STD TI - Nelson EC, Eftimovska E, Lind C, Hager A, Wasson JH, Lindblad S. Patient reported outcome measures in practice. BMJ. 2015;350:g7818. ID - ref5 ER - TY - STD TI - Kennedy I, Sir: Getting it right for children and young people: overcoming cultural barriers in the NHS so as to meet their needs. Commissioned by the Department of Health. London: The Stationery Office. Available at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_119446.pdf [Last accessed 03/04/2014]; 2010. UR - http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_119446.pdf ID - ref6 ER - TY - BOOK PY - 2013 DA - 2013// TI - Improving Children and Young People’s Health Outcomes: a system wide response ID - ref7 ER - TY - BOOK PY - 2013 DA - 2013// TI - Children and Young People's Health Outcomes Forum: Recommendations to improve children and young people’s health results ID - ref8 ER - TY - JOUR AU - Williamson, P. AU - Altman, D. AU - Blazeby, J. AU - Clarke, M. AU - Gargon, E. PY - 2012 DA - 2012// TI - Driving up the quality and relevance of research through the use of agreed core outcomes JO - J Health Serv Res Policy VL - 17 UR - https://doi.org/10.1258/jhsrp.2011.011131 DO - 10.1258/jhsrp.2011.011131 ID - Williamson2012 ER - TY - STD TI - Selb M, Escorpizo R, Kostanjsek N, Stucki G, Ustun B, Cieza A. A guide on how to develop an international classification of functioning, disability and health core set. Eur J Phys Rehabil Med 2015;51(1):105-17 ID - ref10 ER - TY - JOUR AU - Morris, C. AU - Janssens, A. AU - Tomlinson, R. AU - Williams, J. AU - Logan, S. PY - 2013 DA - 2013// TI - Towards a definition of neurodisability: a Delphi survey JO - Dev Med Child Neurol VL - 55 UR - https://doi.org/10.1111/dmcn.12218 DO - 10.1111/dmcn.12218 ID - Morris2013 ER - TY - JOUR AU - Schiariti, V. AU - Selb, M. AU - Cieza, A. AU - O’Donnell, M. PY - 2015 DA - 2015// TI - International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy: a consensus meeting JO - Dev Med Child Neurol VL - 57 UR - https://doi.org/10.1111/dmcn.12551 DO - 10.1111/dmcn.12551 ID - Schiariti2015 ER - TY - JOUR AU - Allard, A. AU - Fellowes, A. AU - Shilling, V. AU - Janssens, A. AU - Beresford, B. AU - Morris, C. PY - 2014 DA - 2014// TI - Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents JO - BMJ Open VL - 4 UR - https://doi.org/10.1136/bmjopen-2013-004611 DO - 10.1136/bmjopen-2013-004611 ID - Allard2014 ER - TY - JOUR AU - Janssens, A. AU - Williams, J. AU - Tomlinson, R. AU - Logan, S. AU - Morris, C. PY - 2014 DA - 2014// TI - Health outcomes for children with neurodisability: what do professionals regard as primary targets? JO - Arch Dis Child VL - 99 UR - https://doi.org/10.1136/archdischild-2013-305803 DO - 10.1136/archdischild-2013-305803 ID - Janssens2014 ER - TY - JOUR AU - Janssens, A. AU - Thompson Coon, J. AU - Rogers, M. AU - Allen, K. AU - Green, C. AU - Jenkinson, C. AU - Tennant, A. AU - Logan, S. AU - Morris, C. PY - 2015 DA - 2015// TI - A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part I: Descriptive Characteristics JO - Value Health VL - 18 UR - https://doi.org/10.1016/j.jval.2014.12.006 DO - 10.1016/j.jval.2014.12.006 ID - Janssens2015 ER - TY - BOOK PY - 2007 DA - 2007// TI - International Classification of Functioning, Disability and Health - Children and Youth Version. ICF-CY. vol. resolution WHA 54.21 PB - WHO CY - Geneva, Switzerland ID - ref16 ER - TY - STD TI - COMET Initiative: Core Outcome Measures in Effectiveness Trials. wwwcomet-initiativeorg [accessed 16 June 2014]. ID - ref17 ER - TY - JOUR AU - Morris, C. AU - Shilling, V. AU - McHugh, C. AU - Wyatt, K. PY - 2011 DA - 2011// TI - Why it is crucial to involve families in all stages of childhood disability research JO - Dev Med Child Neurol VL - 53 UR - https://doi.org/10.1111/j.1469-8749.2011.03984.x DO - 10.1111/j.1469-8749.2011.03984.x ID - Morris2011 ER - TY - JOUR AU - Fink, A. AU - Kosecoff, J. AU - Chassin, M. AU - Brook, R. H. PY - 1984 DA - 1984// TI - Consensus methods: characteristics and guidelines for use JO - Am J Public Health VL - 74 UR - https://doi.org/10.2105/AJPH.74.9.979 DO - 10.2105/AJPH.74.9.979 ID - Fink1984 ER - TY - BOOK AU - Watts, S. AU - Stenner, P. PY - 2012 DA - 2012// TI - Doing Q Methodological Research: Theory, Method & Interpretation PB - SAGE Publications Limited CY - London ID - Watts2012 ER - TY - BOOK AU - Stephenson, W. PY - 1953 DA - 1953// TI - The study of behavior: Q-Technique and its methodology PB - Univiversity of Chicago Press CY - Chicago ID - Stephenson1953 ER - TY - JOUR AU - Thomas-Stonell, N. AU - Oddson, B. AU - Robertson, B. AU - Rosenbaum, P. PY - 2013 DA - 2013// TI - Validation of the Focus on the Outcomes of Communication under Six outcome measure JO - Dev Med Child Neurol VL - 55 UR - https://doi.org/10.1111/dmcn.12123 DO - 10.1111/dmcn.12123 ID - Thomas-Stonell2013 ER - TY - JOUR AU - Wright, F. V. PY - 2015 DA - 2015// TI - What needs to happen before an International Classification of Function, Disability and Health Core Set is ready for clinical use? JO - Dev Med Child Neurol VL - 57 UR - https://doi.org/10.1111/dmcn.12566 DO - 10.1111/dmcn.12566 ID - Wright2015 ER - TY - JOUR AU - Law, M. AU - Hanna, S. AU - King, G. AU - Hurley, P. AU - King, S. AU - Kertoy, M. AU - Rosenbaum, P. PY - 2003 DA - 2003// TI - Factors affecting family-centred service delivery for children with disabilities JO - Child Care Health Dev VL - 29 UR - https://doi.org/10.1046/j.1365-2214.2003.00351.x DO - 10.1046/j.1365-2214.2003.00351.x ID - Law2003 ER - TY - JOUR AU - Wilson, I. B. AU - Cleary, P. D. PY - 1995 DA - 1995// TI - Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes JO - JAMA VL - 273 UR - https://doi.org/10.1001/jama.1995.03520250075037 DO - 10.1001/jama.1995.03520250075037 ID - Wilson1995 ER - TY - JOUR AU - Miller, G. A. PY - 1956 DA - 1956// TI - The magical number seven, plus or minus two: some limits on our capacity for processing information JO - Psychol Rev VL - 63 UR - https://doi.org/10.1037/h0043158 DO - 10.1037/h0043158 ID - Miller1956 ER - TY - JOUR AU - Williamson, P. R. AU - Altman, D. G. AU - Blazeby, J. M. AU - Clarke, M. AU - Devane, D. AU - Gargon, E. AU - Tugwell, P. PY - 2012 DA - 2012// TI - Developing core outcome sets for clinical trials: issues to consider JO - Trials VL - 13 UR - https://doi.org/10.1186/1745-6215-13-132 DO - 10.1186/1745-6215-13-132 ID - Williamson2012 ER - TY - JOUR AU - Young, B. AU - Rice, H. AU - Dixon-Woods, M. AU - Colver, A. F. AU - Parkinson, K. N. PY - 2007 DA - 2007// TI - A qualitative study of the health-related quality of life of disabled children JO - Dev Med Child Neurol VL - 49 UR - https://doi.org/10.1111/j.1469-8749.2007.00660.x DO - 10.1111/j.1469-8749.2007.00660.x ID - Young2007 ER - TY - JOUR AU - Davis, E. AU - Shelly, A. AU - Waters, E. AU - Mackinnon, A. AU - Reddihough, D. AU - Boyd, R. AU - Graham, H. K. PY - 2009 DA - 2009// TI - Quality of life of adolescents with cerebral palsy: Perspectives of adolescents and parents JO - Dev Med Child Neurol VL - 51 UR - https://doi.org/10.1111/j.1469-8749.2008.03194.x DO - 10.1111/j.1469-8749.2008.03194.x ID - Davis2009 ER - TY - JOUR AU - Beresford, B. AU - Tozer, R. AU - Rabiee, P. AU - Sloper, P. PY - 2007 DA - 2007// TI - Desired Outcomes for Children and Adolescents with Autistic Spectrum Disorders JO - Child Soc VL - 21 ID - Beresford2007 ER - TY - JOUR AU - Rabiee, P. AU - Sloper, P. AU - Beresford, B. PY - 2005 DA - 2005// TI - Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication JO - Health Soc Care Community VL - 13 UR - https://doi.org/10.1111/j.1365-2524.2005.00578.x DO - 10.1111/j.1365-2524.2005.00578.x ID - Rabiee2005 ER - TY - JOUR AU - Janssens, A. AU - Rogers, M. AU - Thompson Coon, J. AU - Allen, K. AU - Green, C. AU - Jenkinson, C. AU - Tennant, A. AU - Logan, S. AU - Morris, C. PY - 2015 DA - 2015// TI - 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 JO - Value Health VL - 18 UR - https://doi.org/10.1016/j.jval.2015.01.004 DO - 10.1016/j.jval.2015.01.004 ID - Janssens2015 ER - TY - STD TI - Morris C, Janssens A, Allard A, Thompson-Coon J, Shillling V, Tomlinson R, Williams J, Fellowes A, Rogers M, Allen K, 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). ID - ref33 ER - TY - JOUR AU - Huang, I. C. AU - Revicki, D. A. AU - Schwartz, C. E. PY - 2014 DA - 2014// TI - Measuring pediatric patient-reported outcomes: good progress but a long way to go JO - Qual Life Res VL - 23 UR - https://doi.org/10.1007/s11136-013-0607-2 DO - 10.1007/s11136-013-0607-2 ID - Huang2014 ER - TY - JOUR AU - Matza, L. S. AU - Patrick, D. L. AU - Riley, A. W. AU - Alexander, J. J. AU - Rajmil, L. AU - Pleil, A. M. AU - Bullinger, M. PY - 2013 DA - 2013// TI - Pediatric patient-reported outcome instruments for research to support medical product labeling: report of the ISPOR PRO good research practices for the assessment of children and adolescents task force JO - Value Health VL - 16 UR - https://doi.org/10.1016/j.jval.2013.04.004 DO - 10.1016/j.jval.2013.04.004 ID - Matza2013 ER -