Study protocol: SPARCLE - A multi-centre European study of the relationship of environment to participation and quality of life in children with cerebral palsy

BMC Public Health

Volumn 6, Issue , 2006, Pages

  Colver, Allan ^a  

^a NEWCASTLE UNIVERSITY   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CEREBRAL PALSY; CONTROLLED STUDY; ENVIRONMENTAL FACTOR; EUROPE; FEMALE; HUMAN; MAJOR CLINICAL STUDY; MALE; MULTIVARIATE LOGISTIC REGRESSION ANALYSIS; PATIENT PARTICIPATION; POST HOC ANALYSIS; QUALITY OF LIFE; QUESTIONNAIRE; SCHOOL CHILD; SOCIOECONOMICS; STRUCTURAL EQUATION MODELING; CHILD; COST OF ILLNESS; CROSS-SECTIONAL STUDY; DISABILITY; FAMILY; HANDICAPPED CHILD; MENTAL STRESS; MULTICENTER STUDY (TOPIC); MULTIVARIATE ANALYSIS; PATHOPHYSIOLOGY; PSYCHOLOGY; SICKNESS IMPACT PROFILE; SOCIAL ENVIRONMENT;

CEREBRAL PALSY; CHILD; COST OF ILLNESS; CROSS-SECTIONAL STUDIES; DISABILITY EVALUATION; DISABLED CHILDREN; EUROPE; FAMILY; HUMANS; MULTICENTER STUDIES AS TOPIC; MULTIVARIATE ANALYSIS; QUALITY OF LIFE; QUESTIONNAIRES; SICKNESS IMPACT PROFILE; SOCIAL ENVIRONMENT; STRESS, PSYCHOLOGICAL;

EID: 33646713902     PISSN: 14712458     EISSN: 14712458     Source Type: Journal    
DOI: 10.1186/1471-2458-6-105     Document Type: Article

References (43)

1. World Health Organisation: International Classification of Functioning, Disability and Health. Geneva: World Health Organisation; 2001.
2. Oliver M: The Politics of Disablement. London: Macmillan; 1990.
3. [http://www.mailbase.ac.uk/lists/disability-research/files/children.rtf.] .
4. Watson N, Shakespeare T, Cunningham-Burley S, Barnes C: Life as a disabled child: a qualitative study of young people's experiences and perspectives. University of Edinburgh: Department of Nursing Studies; 2000.
5. Quine L, Pahl J: Stress and coping in families caring for a child with severe mental handicap: a longitudinal study. University of Kent: Institute of Social and Applied Psychology and Centre for Health Studies; 1989.
6. Beresford B, Sloper P, Baldwin S, Newman T: What works in services for families with a disabled child? Essex, UK: Barnardos; 1996:5.
7. World Health Organisation: International Classification of Impairments, Disability and Handicap. Geneva: World Health Organisation; 1980.
8. Shakespeare T: Theorising disability: moving beyond the social model. University of York: Social Policy Research Unit; 1992.
9. WHOQOL Assessment Group: Development and general psychometric properties. Soc Sci Med 1998, 46:1569-85.
10. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19-22 June, 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948. .
11. Berntsson LT, Kohler L: Quality of life among children aged 2-17 years in the five Nordic countries. Eur J Public Health 2001, 11:437-445.
12. Gill DM, Feinstein AR: A critical appraisal of quality of life measurements. JAMA 1994, 272:619-626.
13. Jenney ME, Kane RL, Lurie N: Developing a Measure of Health Outcomes in Survivors of Childhood Cancer: A Review of the Issues. Med Pediatr Oncol 1995, 24:145-153.
14. Jenney ME, Campbell S: Measuring Quality of Life. Arch Dis Child 1997, 77(4):347-350.
15. Eiser C, Havermans T, Craft A, Kernahan J: Development of a measure to assess the perceived illness experience after treatment for cancer. Arch Dis Child 1995, 72:302-307.
16. Christie MJ, French D, Sowden A, West A: Development of a child centred questionnaire for living with asthma. Psychosom Med 1993, 55:541-548.
17. O'Grady RS, Crain LS, Kohn J: The prediction of long-term functional outcomes of children with cerebral palsy. Dev Med Child Neurol 1995, 37(11):997-1005.
18. Michelsen SI, Uldall P, Kejs AMT, Madsen M: Education and employment prospects in cerebral palsy. Dev Med Child Neurol 2005, 47:511-517.
19. Sloper P, Turner S: Service needs of families of children with severe physical disability. Child Care Health Dev 1992, 18:259-282.
20. Statistical principles for clinical trials. Section 5.1: Pre-specification of the Analysis. London: The European Agency for the Evaluation of Medicinal Products 1998.
21. Higgins JPT, Green S: Cochrane Handbook for Systematic Reviews of Interventions 4.2.5 [updated May 2005]. In The Cochrane Library Issue 3 Chichester, UK: John Wiley & Sons, Ltd; 2005.
22. Altman DG: Practical Statistics for Medical Research. London: Chapman and Hall; 1991:120-121.
23. Cans C: Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers. Dev Med Child Neurol 2000, 42:816-824.
24. Lepage C, Noreau L, Bernard PM, Fougeyrollas P: Profile of handicap situations in children with cerebral palsy. Scand J Rehabil Med 1998, 30:263-272.
25. White-Koning M, Arnaud C, Bourdet-Loubere S, Bazex H, Colver AF, Grandjean H: Subjective quality of life in children with intellectual impairment - how can it be assessed? Dev Med Child Neurol 2005, 47:281-285.
26. Cummins RA: Comprehensive Quality of Life Scale - Intellectual/Cognitive Disability. Manual. 5th edition. Melbourne: Deakin University; 1997.
27. White-Koning ML, Arnaud C, Fenieys D, Colver A, Grandjean H: Assessment of response competence before administering self-reported quality of life instruments to children with cerebral palsy and intellectual impairment. Dev Med Child Neurol 2005, 47(Supp 103):61.
28. Ravens-Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Duer W, Auquier P, Power M, Abel T, Czemy L, Mazur J, Czimbalmos A, Tountas Y, Hagquist C, Kilroe J, the European KIDSCREEN Group: KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmaco-economics and Outcomes Research 2005, 5(3):353-364.
29. Goodman R: Psychometric properties of the Strengths and Difficulties Questionnaire (SDQ. J Am Acad Child Adolesc Psychiatry 2001, 40:1337-1345.
30. Abidin RR: Parenting Stress Index Professional Manual. Third edition. USA: Psychological Assessment Resources Inc; 1995.
31. Landgraf JM, Abetz L, Ware JE: The CHQUser's Manual. Boston: Health Act; 1999. Second Printing.
32. Mihaylov SI, Jarvis SN, Colver AF, Beresford B: Identification and description of environmental factors that influence participation of children with cerebral palsy. Dev Med Child Neurol 2004, 46:299-304.
33. Lawlor K, Mihaylov S, Welsh B, Jarvis SJ, Colver AF: A qualitative study of the physical, social and attitudinal environments influencing the participation of children with cerebral palsy in northeast England. Pediatr Rehabil in press.
34. McManus V, Michelsen S, Parkinson K, Colver A, Beckung E, Pez O, Caravale B: Discussion groups with parents of children with cerebral palsy in Europe designed to assist development of a relevant measure of environment. Child Care Health Dev 2006, 32:185-92.
35. De Boeck P, Wilson M: Explanatory item response models: a generalized linear and nonlinear approach. New York: Springer; 2004.
36. Acquadro C, Jambon B, Ellis D, Marquis P: Language and translation issues. In Quality of Life and Pharmaco-economics in Clinical Trials Edited by: Spiker T. Philadelphia: Lippincon-Raven Publishers; 1996.
37. Beaton DE, Bombardier C, Guillemin F, Ferraz MB: Guidelines for the process of cross-cultural adaptation of self-report measures. Spine 2000, 35:3186-3191.
38. Bithell JF: Estimation of relative risk functions. Stat Med 1991, 10:1745-1751.
39. Hosmer DW, Lemeshow S: Applied Logistic Regression. John Wiley and Sons; 1991.
40. Aitkin M, Francis B: Statistical Modelling in GLIM4. Oxford, Oxford University Press; 2005.
41. Rabe-Hesketh S, Skrondal A: Generalized Latent Variable Modelling: Multilevel, Longitudinal and Structural Equation Models. Boca Raton: Chapman and Hall/CRC Press; 2004.
42. Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B: The Gross Motor Function Classification System for cerebral palsy. Dev Med Child Neurol 1997, 39:214-223.
43. Beckung E, Hagberg G: Neuro-impairments, activity limitations, and participation restrictions in children with cerebral palsy. Dev Med Child Neurol 2002, 44:309-316.