Activity level, functional health, and quality of life of children with myelomeningocele as perceived by parents

Clinical Orthopaedics and Related Research

Volumn 469, Issue 5, 2011, Pages 1230-1235

  Flanagan, Ann ^a   Gorzkowski, Marianne ^a   Altiok, Haluk ^a   Hassani, Sahar ^a   Ahn, Kwang Woo ^b  

^a SHRINERS HOSPITALS FOR CHILDREN   (United States)

^b MEDICAL COLLEGE OF WISCONSIN   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADULT; AGE; BODY HEIGHT; BODY MASS; BODY WEIGHT; BRAIN VENTRICLE PERITONEUM SHUNT; CHILD; CHILD CARE; CHILD HEALTH; CLINICAL ARTICLE; CLINICAL ASSESSMENT TOOL; CONFERENCE PAPER; CONTROLLED STUDY; EMOTION; FEMALE; FUNCTIONAL STATUS; HUMAN; INTERVIEW; LUMBAR SPINAL CORD; MALE; MENINGOMYELOCELE; MOTOR PERFORMANCE; NEUROLOGIC EXAMINATION; PARENTAL ATTITUDE; PEDIATRIC OUTCOMES DATA COLLECTION INSTRUMENT; PEDIATRIC QUALITY OF LIFE; PHYSICAL ACTIVITY; PRESCHOOL CHILD; PRIORITY JOURNAL; QUALITY OF LIFE; SCHOOL CHILD; SHORT STATURE;

EID: 79955573085     PISSN: 0009921X     EISSN: 15281132     Source Type: Journal    
DOI: 10.1007/s11999-010-1651-7     Document Type: Conference Paper

References (29)

1. Bandini LG, Schoeller DA, Fukagawa NK, Wykes LJ, Dietz WH. Body composition and energy expenditure in adolescents with cerebral palsy or myelodysplasia. Pediatr Res. 1991;29:70-77
2. Battibugli S, Gryfakis N, Dias L, Kelp-Lenane C, Figlioli S, Fitzgerald E, Hroma N, Seshadri R, Sullivan C. Functional gait comparison between children with myelomeningocele: shunt versus no shunt. Dev Med Child Neurol. 2007;49:764-769 (Pubitemid 47456452)
3. Bier JA, Morales Y, Liebling J, Geddes L, Kim E. Medical and social factors associated with cognitive outcome in individuals with myelomeningocele. Dev Med Child Neurol. 1997;39: 263-266 (Pubitemid 27226340)
4. Bier JA, Prince A, Tremont M, Msall M. Medical, functional, and social determinants of health-related quality of life in individuals with myelomeningocele. Dev Med Child Neurol. 2005; 47:609-612 (Pubitemid 41195053)
5. Bruinings AL, van den Berg-Emons HJ, Buffart LM, van der Heijden-Maessen HC, Roebroeck ME, Stam HJ. Energy cost and physical strain of daily activities in adolescents and young adults with myelomeningocele. Dev Med Child Neurol. 2007;49: 672-677
6. Cate IM, Kennedy C, Stevenson J. Disability and quality of life in spina bifida and hydrocephalus. Dev Med Child Neurol. 2002; 44:317-322 (Pubitemid 34516396)
7. Chan KS, Mangione-Smith R, Burwinkle TM, Rosen M, Varni JW. The PedsQL: reliability and validity of the short-form generic core scales and Asthma Module. Med Care. 2005;43: 256-265 (Pubitemid 40353909)
8. Daltroy LH, Liang MH, Fossel AH, Goldberg MJ. The POSNA pediatric musculoskeletal functional health questionnaire: report on reliability, validity, and sensitivity to change. Pediatric Outcomes Instrument Development Group. Pediatric Orthopaedic Society of North America. J Pediatr Orthop. 1998;18:561-571
9. Davis BE, Shurtleff DB, Walker WO, Seidel KD, Duguay S. Acquisition of autonomy skills in adolescents with myelomeningocele. Dev Med Child Neurol. 2006;48:253-258
10. Haynes RJ, Sullivan E. The Pediatric Orthopaedic Society of North America pediatric orthopaedic functional health questionnaire: an analysis of normals. J Pediatr Orthop. 2001;21:619-621 (Pubitemid 32801777)
11. Hetherington R, Dennis M, Barnes M, Drake J, Gentili F. Functional outcome in young adults with spina bifida and hydrocephalus. Childs Nerv Syst. 2006;22:117-124 (Pubitemid 43231158)
12. Hinderer KA, Hinderer SR, Shurtleff DB. Myelodysplasia. In: Campbell SK, Vander Linden DW, Palisano RJ, eds. Physical Therapy for Children. St Louis, MO: Saunders Elsevier; 2006: 735-789
13. Holmbeck GN, Westhoven VC, Phillips WS, Bowers R, Gruse C, Nikolopoulos T, Totura CM, Davison K. A multimethod, multiinformant, and multidimensional perspective on psychosocial adjustment in preadolescents with spina bifida. J Consult Clin Psychol. 2003;71:782-796 (Pubitemid 36897412)
14. Johnson KL, Dudgeon B, Kuehn C, Walker W. Assistive technology use among adolescents and young adults with spina bifida. Am J Public Health. 2007;97:330-336 (Pubitemid 47279383)
15. Kirpalani HM, Parkin PC, Willan AR, Fehlings DL, Rosenbaum PL, King D, Van Nie AJ. Quality of life in spina bifida: importance of parental hope. Arch Dis Child. 2000;83:293-297
16. Leger RR. Severity of illness, functional status, and HRQOL in youth with spina bifida. Rehabil Nurs. 2005;30:180-187; discussion 188
17. Muller-Godeffroy E, Michael T, Poster M, Seidel U, Schwarke D, Thyen U. Self-reported health-related quality of life in children and adolescents with myelomeningocele. Dev Med Child Neurol. 2008;50:456-461 (Pubitemid 351699589)
18. Oddson BE, Clancy CA, McGrath PJ. The role of pain in reduced quality of life and depressive symptomatology in children with spina bifida. Clin J Pain. 2006;22:784-789 (Pubitemid 44627441)
19. Padua L, Rendeli C, Ausili E, Aprile I, Caliandro P, Tonali P, Salvaggio E. Relationship between the clinical-neurophysiologic pattern, disability, and quality of life in adolescents with spina bifida. J Child Neurol. 2004;19:952-957 (Pubitemid 40214453)
20. Rendeli C, Ausili E, Tabacco F, Caliandro P, Aprile I, Tonali P, Salvaggio E, Padua L. Assessment of health status in children with spina bifida. Spinal Cord. 2005;43:230-235 (Pubitemid 40546722)
21. Schoenmakers MA, Uiterwaal CS, Gulmans VA, Gooskens RH, Helders PJ. Determinants of functional independence and quality of life in children with spina bifida. Clin Rehabil. 2005;19:677-685 (Pubitemid 41309597)
22. Tilford JM, Grosse SD, Robbins JM, Pyne JM, Cleves MA, Hobbs CA. Health state preference scores of children with spina bifida and their caregivers. Qual Life Res. 2005;14:1087-1098 (Pubitemid 40685231)
23. van den Berg-Emons HJ, Bussmann JB, Brobbel AS, Roebroeck ME, van Meeteren J, Stam HJ. Everyday physical activity in adolescents and young adults with meningomyelocele as measured with a novel activity monitor. J Pediatr. 2001;139:880-886
24. Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr. 2003;3:329-341 (Pubitemid 37527280)
25. Varni JW, Rode CA, Seid M, Katz ER, Friedman-Bender A, Quiggins DJ. The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32). II. Feasibility and range of measurement. J Behav Med. 1999;22:397-406 (Pubitemid 29422751)
26. Varni JW, Seid M, Knight TS, Uzark K, Szer IS. The PedsQL 4.0 Generic Core Scales: sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med. 2002;25:175-193 (Pubitemid 37490058)
27. Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39: 800-812 (Pubitemid 33686263)
28. Verhoef M, Barf HA, Post MW, van Asbeck FW, Gooskens RH, Prevo AJ. Functional independence among young adults with spina bifida, in relation to hydrocephalus and level of lesion. Dev Med Child Neurol. 2006;48:114-119 (Pubitemid 43125656)
29. Young N, McCormick A, Mills W, Barden W, Boydell K, Law M, Wedge J, Fehlings D, Mukherjee S, Rumney P, Williams JI. The transition study: a look at youth and adults with cerebral palsy, spina bifida and acquired brain injury. Phys Occup Ther Pediatr. 2006;26:25-45 (Pubitemid 44800468)