Study protocol: Determinants of participation and quality of life of adolescents with cerebral palsy: A longitudinal study (SPARCLE2)

BMC Public Health

Volumn 10, Issue , 2010, Pages

  Colver, Allan F ^a,b   Dickinson, Heather O ^a  

^a NEWCASTLE UNIVERSITY   (United Kingdom)

^b ROYAL VICTORIA INFIRMARY   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ARTICLE; CEREBRAL PALSY; CHILD; CHILD PARENT RELATION; DISABLED PERSON; EUROPE; FEMALE; HUMAN; INFORMATION PROCESSING; LONGITUDINAL STUDY; MALE; MENTAL HEALTH; MENTAL STRESS; METHODOLOGY; PAIN; PATHOPHYSIOLOGY; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; THEORETICAL MODEL;

ADOLESCENT; CEREBRAL PALSY; CHILD; DATA COLLECTION; DISABLED PERSONS; EUROPE; FEMALE; HUMANS; LONGITUDINAL STUDIES; MALE; MENTAL HEALTH; MODELS, THEORETICAL; PAIN; PARENT-CHILD RELATIONS; QUALITY OF LIFE; RESEARCH DESIGN; STRESS, PSYCHOLOGICAL;

EID: 77952616840     PISSN: None     EISSN: 14712458     Source Type: Journal    
DOI: 10.1186/1471-2458-10-280     Document Type: Article

References (68)

1. Service needs of families of children with severe physical disability. P Sloper S Turner, Child Care Health Dev 1992 18 259 282 10.1111/j.1365-2214.1992. tb00359.x 1394855
2. Education and employment prospects in cerebral palsy. SI Michelsen P Uldall AMT Kejs M Madsen, Dev Med Child Neurol 2005 47 511 517 10.1017/S0012162205001015 16108450
3. Social integration of adults with cerebral palsy. SI Michelsen P Uldall T Hansen M Madsen, Dev Med Child Neurol 2006 48 643 649 10.1017/S0012162206001368 16836775
4. Factors affecting family-centred service delivery for children with disabilities. M Law S Hanna G King P Hurley S King M Kertoy P Rosenbaum, Child Care Health Dev 2003 29 357 366 10.1046/j.1365-2214.2003.00351.x 12904243
5. M Oliver, The Politics of Disablement London: Macmillan 1990
6. International classification of functioning, disability and health. World Health Organisation, Book International classification of functioning, disability and health WHO, Geneva 2001
7. World Health Organisation Classification of Functioning, Disability and Health. Children and Youth Version. World Health Organisation, Book World Health Organisation Classification of Functioning, Disability and Health. Children and Youth Version WHO, Geneva 2007
8. What are quality of life measurements measuring? MF Muldoon SD Barger JD Flory SB Manuck, BMJ 1998 316 542 545 9501721
9. Quality of life for children and adolescents with developmental disabilities: review of conceptual and methodological issues relevant to public policy. B Zekovic R Renwick, Disabil Soc 2003 18 19 34 10.1080/713662199
10. The World Health Organization quality of life assessment: position paper from the World Health Organization. WHOQOL, Soc Sci Med 1995 41 1403 1409 10.1016/0277-9536(95)00112-K 8560308
11. Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study. HO Dickinson KN Parkinson U Ravens-Sieberer G Schirripa U Thyen C Arnaud E Beckung J Fauconnier V McManus SI Michelsen, et al. Lancet 2007 369 2171 2178 10.1016/S0140-6736(07)61013-7 17604799
12. What is pediatrics?: prenatal medicine to young adult care. VA Fulginiti, Am J Dis Child 1992 146 17 18 1445504
13. Life beyond pediatrics. Transition of chronically ill adolescents from pediatric to adult health care systems. DV Schidlow SB Fiel, Med Clin North Am 1990 74 1113 1120 2201847
14. Cerebral palsy - the transition from youth to adulthood. CJ Stevenson PO Pharoah R Stevenson, Dev Med Child Neurol 1997 39 336 342 9236701
15. Transition health services for youth with disabilities: a global perspective. G Bowes G Sinnema JC Suris U Buhlmann, J Adolesc Health 1995 17 23 31 10.1016/1054-139X(95)00076-5 7578158
16. Bridging the gaps: health care for adolescents. Intercollegiate Working Party on Adolescent Health, Book Bridging the gaps: health care for adolescents London: Royal College of Paediatrics and Child Health 2003
17. The needs of physically disabled young people during transition to adult services. B Ko G McEnery, Child Care Health Dev 2004 30 317 323 10.1111/j.1365-2214.2004.00422.x 15191421
18. Overview of transition issues for youth with disabilities. RW Blum, Pediatrician 1991 18 101 104 1832222
19. Participation of children with cerebral palsy is influenced by where they live. D Hammal S Jarvis A Colver, Dev Med Child Neurol 2004 46 292 298 10.1017/S0012162204000489 15132258
20. Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. E Beckung G Hagberg, Dev Med Child Neurol 2002 44 309 316 10.1017/S0012162201002134 12033716
21. Life as a disabled child: A qualitative study of young people's experience and perspectives. N Watson T Shakespeare S Cunningham-Burley C Barnes, Department of Nursing Studies, University of Edinburgh: Economic and Social Science Research Council 1999
22. Bodily pain and health-related quality of life in children with cerebral palsy. CM Houlihan M O'Donnell M Conaway RD Stevenson, Dev Med Child Neurol 2004 46 305 310 10.1017/S0012162204000507 15132260
23. Identification and description of environmental factors that influence participation of children with cerebral palsy. SI Mihaylov S Jarvis A Colver B Beresford, Dev Med Child Neurol 2004 46 299 304 10.1017/S0012162204000490 15132259
24. Quality of life and health-related quality of life of adolescents with cerebral palsy. PL Rosenbaum MH Livingston RJ Palisano BE Galuppi DJ Russell, Dev Med Child Neurol 2007 49 516 521 10.1111/j.1469-8749.2007.00516.x 17593124
25. Quality of life among adolescents with cerebral palsy: what does the literature tell us? MH Livingston PL Rosenbaum DJ Russell RJ Palisano, Dev Med Child Neurol 2007 49 225 231 10.1111/j.1469-8749.2007.00225.x 17355481
26. Health-related quality of life: gender differences in childhood and adolescence. C Bisegger B Cloetta U von Rueden T Abel U Ravens-Sieberer, Soz Praventivmed 2005 50 281 291 10.1007/s00038-005-4094-2 16300172
27. Prevalence and characteristics of children with cerebral palsy in Europe. SCPE, Dev Med Child Neurol 2002 44 633 640 12227618
28. UKCP: a collaborative network of cerebral palsy registers in the United Kingdom. G Surman S Bonellie J Chalmers A Colver H Dolk K Hemming A King JJ Kurinczuk J Parkes MJ Platt, J Public Health (Oxf) 2006 28 148 156 10.1093/pubmed/fdi087 16556625
29. Regional variation in survival of people with cerebral palsy in the United Kingdom. K Hemming JL Hutton A Colver MJ Platt, Pediatrics 2005 116 1383 1390 10.1542/peds.2005-0259 16322162
30. Study protocol: SPARCLE - a multi-centre European study of the relationship of environment to participation and quality of life of children with cerebral palsy. A Colver, BMC Public Health 2006 6 105 10.1186/1471-2458-6- 105 16638126
31. Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy. H Dickinson K Parkinson V McManus C Arnaud E Beckung J Fauconnier SI Michelsen J Parkes G Schirripa U Thyen A Colver, BMC Public Health 2006 6 273 10.1186/1471-2458-6-273 17087828
32. Parent-reported quality of life of children with cerebral palsy in Europe. C Arnaud M White-Koning SI Michelsen J Parkes K Parkinson U Thyen E Beckung HO Dickinson J Fauconnier M Marcelli, et al. Pediatrics 2008 121 54 64 10.1542/peds.2007-0854 18166557
33. Psychological problems in children with cerebral palsy: a cross-sectional European study. J Parkes M White-Koning HO Dickinson U Thyen C Arnaud E Beckung J Fauconnier M Marcelli V McManus SI Michelsen, et al. J Child Psychol Psychiatry 2008 49 405 413 10.1111/j.1469-7610.2007.01845.x 18081767
34. Frequency of participation of 8-12-year-old children with cerebral palsy; a multi-centre cross-sectional European study. SI Michelsen E Flachs P Uldall E Eriksen V McManus J Parkes KN Parkinson U Thyen C Arnaud E Beckung, et al. Eur J Paediatr Neurol 2009 13 165 177 10.1016/j.ejpn.2008.03.005 18571944
35. Quantifying the physical, social and attitudinal environment of children with cerebral palsy. HO Dickinson A Colver, Disabil Rehabil 2010
36. A qualitative study of the physical, social and attitudinal environments influencing the participation of children with cerebral palsy in northeast England. K Lawlor S Mihaylov B Welsh S Jarvis A Colver, Pediatr Rehabil 2006 9 219 228 17050400
37. Participation of disabled children: how should it be characterised and measured? H McConachie AF Colver RJ Forsyth SN Jarvis KN Parkinson, Disabil Rehabil 2006 28 1157 1164 10.1080/09638280500534507 16966237
38. Discussion groups with parents of children with cerebral palsy in Europe designed to assist development of a relevant measure of environment. V McManus S Michelsen K Parkinson A Colver E Beckung O Pez B Caravale, Child Care Health Dev 2006 32 185 192 10.1111/j.1365-2214.2006.00601.x 16441853
39. National contextual factors affecting the lives of disabled children in Denmark, France, Germany, Ireland, Italy, Sweden and UK (England and Northern Ireland). K Tisdall, Book National contextual factors affecting the lives of disabled children in Denmark, France, Germany, Ireland, Italy, Sweden and UK (England and Northern Ireland) Newcastle: Newcastle University 2006 1 http://www.ncl.ac.uk/sparcle/Publications-files/WebVol1.pdf
40. National contextual factors affecting the lives of disabled children in Denmark, France, Germany, Ireland, Italy, Sweden and UK (England and Northern Ireland). K Tisdall, Book National contextual factors affecting the lives of disabled children in Denmark, France, Germany, Ireland, Italy, Sweden and UK (England and Northern Ireland) Newcastle: Newcastle University 2006 2 http://www.ncl.ac.uk/sparcle/Publications-files/WebVol2.pdf
41. Subjective quality of life in children with intellectual impairment - how can it be assessed? M White-Koning C Arnaud S Bourdet-Loubere H Bazex A Colver H Grandjean, Dev Med Child Neurol 2005 47 281 285 10.1017/S0012162205000526 15832552
42. Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy. M White-Koning C Arnaud HO Dickinson U Thyen E Beckung J Fauconnier V McManus SI Michelsen J Parkes K Parkinson, et al. Pediatrics 2007 120 804 814 10.1542/peds.2006-3272 17908738
43. A qualitative study of the health-related quality of life of disabled children. B Young H Rice M Dixon-Woods AF Colver KN Parkinson, Dev Med Child Neurol 2007 49 660 665 10.1111/j.1469-8749.2007.00660.x 17718821
44. Access of children with cerebral palsy to the physical, social and attitudinal environment they need: a cross-sectional European study. AF Colver HO Dickinson, Disabil Rehabil 2010 20446803
45. Rasch measurement properties of the KIDSCREEN quality of life instrument in children with cerebral palsy and differential item functioning between children with and without cerebral palsy. M Erhart U Ravens-Sieberer HO Dickinson A Colver, Value Health 2009 19490565
46. Behaviour in children with cerebral palsy with and without epilepsy. M Carlsson I Olsson G Hagberg E Beckung, Dev Med Child Neurol 2008 50 784 789 10.1111/j.1469-8749.2008.03090.x 18834391
47. Reliability and validity of the Child Health QuestionnairePF-50 for European children with cerebral palsy. N McCullough J Parkes M White-Koning E Beckung A Colver, J Pediatr Psychol 2009 34 41 50 10.1093/jpepsy/jsn048 18499739
48. H Green A McGinnity H Meltzer T Ford R Goodman, Mental Health of Children and Young People in Great Britain 2004 London: Office for National Statistics 2005
49. Centre for Longitudinal Studies, 2008 http://www.cls.ioe.ac.uk/ publications.asp?section=0001000100060001
50. Psychological problems in children with cerebral palsy: a cross-sectional European study. J Parkes M White-Koning HO Dickinson U Thyen C Arnaud E Beckung J Fauconnier M Marcelli V McManus SI Michelsen, et al. J Child Psychol Psychiatry 2008 49 4 405 13 10.1111/j.1469-7610.2007.01845.x 18081767
51. Frequency of participation of 8-12-year-old children with cerebral palsy; a multi-centre cross-sectional European study. SI Michelsen E Flachs P Uldall E Eriksen V McManus J Parkes K Parkinson U Thyen C Arnaud E Beckung, et al. Eur J Paediatr Neurol 2009 13 165 77 10.1016/j.ejpn.2008.03.005 18571944
52. J Loehlin, Latent variable models Hillsdale, NJ, Erlbaum Publishers 1992
53. The promise and limits of international bioethics: lessons from the recent revision of the Declaration of Helsinki. JR Williams, J Int Bioethique 2004 15 31 42 10.3917/jib.151.0031 15835066
54. KIDSCREEN-52 quality-of-life measure for children and adolescents. U Ravens-Sieberer A Gosch L Rajmil M Erhart J Bruil W Duer P Auquier M Power T Abel L Czemy, et al. Expert Review of Pharmacoeconom Outcomes Res 2005 5 353 364 10.1586/14737167.5.3.353 (Pubitemid 40894972)
55. E Thelen L Smith, A dynamic systems approach to the development of cognition and action Cambridge, Massachusetts: MIT Press 1994
56. G Morgan N Leech K Barrett N Busch-Rossnagel R Harmon, The dimensions of mastery questionnaire (manual) Colorado State University 2000
57. Stress and adaptation in mothers of children with cerebral palsy. J Manuel MJ Naughton R Balkrishnan B Paterson Smith LA Koman, J Pediatr Psychol 2003 28 197 201 10.1093/jpepsy/jsg007 12654945
58. Psychometric properties of the Strengths and Difficulties Questionnaire. R Goodman, J Am Acad Child Adolesc Psychiatry 2001 40 1337 1345 10.1097/00004583-200111000-00015 11699809
59. What to do with missing data? G Molenberghs, J R Stat Soc A 2007 170 861 863 10.1111/j.1467-985X.2007.00504.x
60. Semiparametric regression for repeated outcomes with nonignorable nonresponse. A Rotnitzky JM Robins DO Scharfstein, J Am Stat Assoc 1998 93 1321 1339 10.2307/2670049
61. RB Kline, Principles and practice of structural equation modeling New York, Guilford Press Second 2005
62. BM Byrne, Structural equation modeling with LISREL, PRELIS and SIMPLIS: basic concepts, applications and programming Mahwah, NJ, Erlbaum 1998
63. G Dunn B Everitt A Pickles, Modelling covariances and latent variables using EQS London: Chapman & Hall/CRC 1993
64. Profile of handicap situations in children with cerebral palsy. C Lepage L Noreau PM Bernard P Fougeyrollas, Scand J Rehabil Med 1998 30 263 272 10.1080/003655098444011 9825391
65. Measuring participation in children with disabilities using the Assessment of Life Habits. L Noreau C Lepage L Boissiere R Picard P Fougeyrollas J Mathieu G Desmarais L Nadeau, Dev Med Child Neurol 2007 49 666 671 10.1111/j.1469-8749.2007.00666.x 17718822
66. R Abidin, Parenting Stress Index Professional Manual USA: Psychological Assessment Resources Inc 3 1995
67. J Landgraf L Abetz JE Ware, Child Health Questionnaire (CHQ): a User's Manual, Second Printing Boston, MA: HealthAct 1999
68. Pediatric Pain Questionnaire - Teen Form. JW Varni, Book Pediatric Pain Questionnaire - Teen Form City: LICENSOR Mapi Research Trust 1998