Health-related quality of life in children and adolescents with stroke, self-reports, and parent/proxies reports: Cross-sectional investigation

Annals of Neurology

Volumn 70, Issue 1, 2011, Pages 70-78

  Neuner, Bruno ^a   Von MacKensen, Sylvia ^b   Krümpel, Anne ^c   Manner, Daniela ^c   Friefeld, Sharon ^d   Nixdorf, Sarah ^c   Frühwald, Michael ^e   Deveber, Gabrielle ^f   Nowak Göttl, Ulrike ^c,g  

^a UNIVERSITY OF MÜNSTER   (Germany)

^b UNIVERSITY MEDICAL CENTER HAMBURG EPPENDORF   (Germany)

^c UNIVERSITY HOSPITAL MÜNSTER   (Germany)

^d UNIVERSITY OF TORONTO   (Canada)

^e Department of Pediatrics   (Germany)

^f HOSPITAL FOR SICK CHILDREN   (Canada)

^g UNIVERSITY HOSPITAL SCHLESWIG HOLSTEIN   (Germany)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ARTICLE; CHILD; CHILDHOOD DISEASE; CONTROLLED STUDY; CROSS-SECTIONAL STUDY; DISEASE SEVERITY; FAMILY STRESS; FEMALE; FRIEND; HUMAN; INFANT; LONG TERM CARE; MAJOR CLINICAL STUDY; MALE; OUTCOME ASSESSMENT; PARENT REPORT; PHYSICAL ACTIVITY; PHYSICAL CAPACITY; PRESCHOOL CHILD; PRIORITY JOURNAL; PROXY REPORT; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; SCHOOL; SCHOOL CHILD; SELF ESTEEM; SELF EVALUATION; SELF REPORT; STROKE; SURVIVOR; WELLBEING;

ADOLESCENT; AGE FACTORS; CHILD; CHILD, PRESCHOOL; COHORT STUDIES; CROSS-SECTIONAL STUDIES; FEMALE; FOLLOW-UP STUDIES; HEALTH STATUS INDICATORS; HUMANS; MALE; NERVOUS SYSTEM DISEASES; PARENTS; PROXY; QUALITY OF LIFE; QUESTIONNAIRES; SELF REPORT; STROKE; YOUNG ADULT;

EID: 79960838428     PISSN: 03645134     EISSN: 15318249     Source Type: Journal    
DOI: 10.1002/ana.22381     Document Type: Article

References (39)

1. Earley CJ, Kittner SJ, Feeser BR, et al. Stroke in children and sickle-cell disease: Baltimore-Washington-Cooperative Young Stroke Study. Neurology 1998; 51: 169-176. (Pubitemid 28345379)
2. Kirkham FJ, Prengler M, Hewes DK, Ganesan V,. Risk factors for arterial ischemic stroke in children. J Child Neurol 2000; 15: 299-307. (Pubitemid 30341361)
3. Haywood S, Liesner R, Pindora S, Ganesan V,. Thrombophilia and first arterial ischaemic stroke: a systematic review. Arch Dis Child 2005; 90: 402-405. (Pubitemid 40488681)
4. deVeber G, Andrew M, Adams C, et al. Canadian Pediatric Ischemic Stroke Study Group. Cerebral sinovenous thrombosis in children. N Engl J Med 2001; 345: 417-423.
5. World Health Organization. Constitution of the World Health Organization. Geneva, Switzerland: World Health Organization, 1947.
6. Duncan PW, Samsa GP, Weinberger M, et al. Health status of individuals with mild stroke. Stroke 1997; 28: 740-745. (Pubitemid 27161456)
7. Bullinger M,. Quality of life: definition, conceptualization and implicationsâa methodologist's view. Theor Surg 1991; 6: 143-149.
8. Suenkeler IH, Nowak M, Misselwitz B, et al. Time-course of health-related quality of life as determined 3, 6 and 12 months after stroke. J Neurol 2002; 249: 1160-1167.
9. Carod-Artal J, Egido JA, Gonzales JL, Varela de Seijas E., Quality of life among stroke survivors evaluated 1 year after stroke: experience of a stroke unit. Stroke 2000; 31: 2995-3000.
10. Hopman WM, Verner J., Quality of life during and after inpatient stroke rehabilitation. Stroke 2003; 34: 801-805. (Pubitemid 36307416)
11. Müller-Nordhorn J, Nolte CH, Rossnagel K, et al. The use of the 12-item short-form health status instrument in a longitudinal study of patients with stroke and transient ischaemic attack. Neuroepidemiology 2005; 24: 106-102.
12. Owolabi MO,. What are the consistent predictors of generic and specific post-stroke health-related quality of life? Cerebrovasc Dis 2010; 29: 105-110.
13. Lin KC, Fu T, Wu CY, et al. Psychometric comparisons of the stroke impact scale 3.0 and stroke-specific quality of life scale. Qual Life Res 2010; 19: 435-343.
14. Hong KS, Saver JL., Years of disability-adjusted life gained as a result of thrombolytic therapy for acute ischemic stroke. Stroke 2010; 41: 471-477.
15. Lee HY, Hwang JS, Jeng JS, Wang JD,. Quality-adjusted life expectancy (QALE) and loss of QUALE for patients with ischaemic stroke and intracerebral hemorrhage. A 13-year follow-up. Stroke 2010; 41: 739-744.
16. Matza LS, Swensen AR, Flood EM, Secnik K, Leidy NK,. Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. Value Health 2004; 7: 79-82.
17. Neugebauer E, Boullion B, Bullinger M, Wood-Dauphinee S,. Quality of life after multiple trauma-summary and recommendations of the consensus conference. Restor Neurol Neurosci 2002; 20: 161-167. (Pubitemid 35404349)
18. Beal AC, Co JP, Dougherty D, et al. Quality measures for children's health care. Pediatrics 2004; 113: 199-209. (Pubitemid 38057484)
19. Friefeld S, Yeboah O, Jones JE, deVeber G,. Health-related quality of life and its relationship to neurological outcome in child survivors of stroke. CNS Spectrums 2004; 9: 465-475. (Pubitemid 38868899)
20. Cnossen MH, Aarsen FE, den Akker SLJ, et al. Paediatric arterial ischaemic stroke: functional outcome and risk factors. Dev Med Child Neurol 2010: 52; 394-399.
21. deVeber G, MacGregor D, Curtis R, Mayank S,. Neurological outcome in survivors of childhood arterial ischemic stroke and sinovenous thrombosis. J Child Neurol 2000; 15: 316-324. (Pubitemid 30341363)
22. Ravens-Sieberer U,. Der Kindl-Fragebogen zur Erfassung der gesundheitsbezogenen Lebensqualität bei Kindern und Jugendlichen-revidierte Form [The KINDL questionnaire for assessment of health-related quality of life in children and adolesents-revised version]. In:, Schumacher J, Klaiberg A, Brähler E, eds. Diagnostische Verfahren zu Lebensqualität und Wohlbefinden [Diagnostic methods for evaluation of quality of life and well-being]. Göttingen, Germany: Hogrefe Verlag, 2003; 184: 188.
23. Ravens-Sieberer U, Erhart M, Wille N, Bullinger M,; BELLA study group. Health-related quality of life in children and adolescents in Germany: results of the BELLA study. Eur Child Adolesc Psychiatry 2008; 17 () suppl 1: 148-156.
24. Ravens-Sieberer U, Ellert U, Erhart M,. Health-related quality of life of children and adolescents in Germany. Norm data from the German Health Interview and Examination Survey (KiGGS). Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2007; 50: 810-818.
25. Ravens-Sieberer U, Bullinger M,. Assessing the health-related quality of life in chronically ill children with the German KINDL: first psychometric and content-analytical results. Qual Life Res 1998; 7: 399-408.
26. Winkler J, Stolzenberg H,. [Social class index in the Federal Health Survey]. Der Sozialschichtindex im Bundesgesundheitssurvey. Gesundheitswesen 1999; 61: S178-S183.
27. Daseking M, Petermann F, Simonis A,. Behavioral disorders and psycho-social outcome after stroke in children. Fortschr Neurol Psychiat 2008; 76: 662-671.
28. deVeber G, Roach ES, Riela AR, Wizniter M,. Stroke in children: recognition, treatment, and future directions. Semin Pediatr Neurol 2000; 7: 309-317. (Pubitemid 32039860)
29. Ganesan V, Hogan A, Shack N, et al. Outcome after ischaemic stroke in childhood. Dev Med Child Neurol 2000; 42: 455-461. (Pubitemid 30427053)
30. Gordon AL, Ganesan V, Towell A, Kirkham FJ,. Functional outcome following stroke in children. J Child Neurol 2002; 17: 429-434. (Pubitemid 35012138)
31. Han CJ, Lynch JK, Lee LE, Nelson KB,. Health-related quality of life in children with stroke. Stroke 2004; 35: 288.
32. Eiser C, Morse R,. A review of measures of quality of life for children with chronic illness. Arch Dis Child 2001; 84: 205-211. (Pubitemid 32250825)
33. Ravens-Sieberer U, Erhart M, Wille N, et al. Generic health-related quality-of-life assessment in children and adolescents: methodological considerations. Pharmacoeconomics 2006; 24: 1199-1220. (Pubitemid 44901676)
34. Hays RD, Vickrey BG, Hermann BP, et al. Agreement between self-reports and proxy reports of quality of life in epilepsy patients. Qual Life Res 1995; 4: 159-168.
35. White-Koning M, Arnaud C, Bourdet-Loubere S, Bazex H, Colver A,. Subjective quality of life in children with intellectual impairmentâhow can it be assessed? Dev Med Child Neurol 2005; 47: 281-285. (Pubitemid 40484908)
36. Epstein AM, Hall JA, Tognetti J, Son LH, Conant L Jr,. Using proxies to evaluate quality of life: can they provide valid information about patients' health status and satisfaction with medical care? Med Care 1989; 27: S91-S98.
37. Noble AJ, Schenk T,. Which variables help explain the poor health-related quality of life after subarachnoid hemorrhage? A meta-analysis. Neurosurgery 2010; 66: 772-783.
38. Bullinger M, Ravens-Sieberer U,. Quality of life and chronic conditions: the perspective of children and adolescents in rehabilitation. Prax Kinderpsychol Kinderpsychiatr 2006; 55: 23-35. (Pubitemid 43129228)
39. Bullinger M, Bruett AL, Erhart M, Ravens-Sieberer U,; BELLA study group. Psychometric properties of the KINDL-R questionnaire: results of the BELLA study. Eur Child Adolesc Psychiatry 2008; 17 (suppl 1): 125-132.