Skip to main content
Erschienen in: Clinical Orthopaedics and Related Research® 5/2011

01.05.2011 | Symposium: Myelomeningocele

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

verfasst von: Ann Flanagan, PT, PCS, Marianne Gorzkowski, BSN, RN, Haluk Altiok, MD, Sahar Hassani, MS, Kwang Woo Ahn, PhD

Erschienen in: Clinical Orthopaedics and Related Research® | Ausgabe 5/2011

Einloggen, um Zugang zu erhalten

Abstract

Background

To provide the best health care for individuals with myelomeningocele (MM), clinicians and researchers need to understand their health and functional status as well as quality of life. The literature is mixed regarding the relationship between motor level and health-related quality of life (HRQOL) for these individuals.

Questions/purposes

We compared the HRQOL of children with MM at the L2 and above and L3-5 motor level and to demonstrate how having a shunt, age, and body mass index affect HRQOL instruments for these two motor level groups.

Methods

We recruited 50 patients with MM (24 male, 26 female) with a mean age of 11.5 years (range, 5–18 years) and motor levels of L2 and above (n = 15) and L3-5 (n = 35). Guardians were interviewed using standardized functional and HRQOL tools (the Pediatric Quality of Life and the Pediatric Outcomes Data Collection Instrument); height, weight, presence of a shunt, ambulatory level, and body mass index were also collected.

Results

We found a decreased HRQOL score for children with MM in the L2 and above motor level compared with those in the L3-5 motor level group. HRQOL had no correlation with body mass index and limited correlation with age. The presence of a shunt correlated with a decreased HRQOL.

Conclusions

Children with MM had deficits in HRQOL and that was associated with neurologic level and presence of a shunt.

Level of Evidence

Level IV, prognostic study. See Guidelines for Authors for a complete description of levels of evidence.
Literatur
1.
Zurück zum Zitat 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;29:70–77PubMedCrossRef 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;29:70–77PubMedCrossRef
2.
Zurück zum Zitat 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;49:764–769PubMedCrossRef 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;49:764–769PubMedCrossRef
3.
Zurück zum Zitat 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;39:263–266PubMedCrossRef 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;39:263–266PubMedCrossRef
4.
Zurück zum Zitat 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;47:609–612PubMedCrossRef 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;47:609–612PubMedCrossRef
5.
Zurück zum Zitat 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;49:672–677PubMedCrossRef 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;49:672–677PubMedCrossRef
6.
Zurück zum Zitat Cate IM, Kennedy C, Stevenson J. Disability and quality of life in spina bifida and hydrocephalus. Dev Med Child Neurol. 2002;44:317–322PubMedCrossRef Cate IM, Kennedy C, Stevenson J. Disability and quality of life in spina bifida and hydrocephalus. Dev Med Child Neurol. 2002;44:317–322PubMedCrossRef
7.
Zurück zum Zitat 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;43:256–265PubMedCrossRef 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;43:256–265PubMedCrossRef
8.
Zurück zum Zitat 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;18:561–571PubMed 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;18:561–571PubMed
9.
Zurück zum Zitat Davis BE, Shurtleff DB, Walker WO, Seidel KD, Duguay S. Acquisition of autonomy skills in adolescents with myelomeningocele. Dev Med Child Neurol. 2006;48:253–258PubMedCrossRef Davis BE, Shurtleff DB, Walker WO, Seidel KD, Duguay S. Acquisition of autonomy skills in adolescents with myelomeningocele. Dev Med Child Neurol. 2006;48:253–258PubMedCrossRef
10.
Zurück zum Zitat Haynes RJ, Sullivan E. The Pediatric Orthopaedic Society of North America pediatric orthopaedic functional health questionnaire: an analysis of normals. J Pediatr Orthop. 2001;21:619–621PubMedCrossRef Haynes RJ, Sullivan E. The Pediatric Orthopaedic Society of North America pediatric orthopaedic functional health questionnaire: an analysis of normals. J Pediatr Orthop. 2001;21:619–621PubMedCrossRef
11.
Zurück zum Zitat Hetherington R, Dennis M, Barnes M, Drake J, Gentili F. Functional outcome in young adults with spina bifida and hydrocephalus. Childs Nerv Syst. 2006;22:117–124PubMedCrossRef Hetherington R, Dennis M, Barnes M, Drake J, Gentili F. Functional outcome in young adults with spina bifida and hydrocephalus. Childs Nerv Syst. 2006;22:117–124PubMedCrossRef
12.
Zurück zum Zitat 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 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.
Zurück zum Zitat Holmbeck GN, Westhoven VC, Phillips WS, Bowers R, Gruse C, Nikolopoulos T, Totura CM, Davison K. A multimethod, multi-informant, and multidimensional perspective on psychosocial adjustment in preadolescents with spina bifida. J Consult Clin Psychol. 2003;71:782–796PubMedCrossRef Holmbeck GN, Westhoven VC, Phillips WS, Bowers R, Gruse C, Nikolopoulos T, Totura CM, Davison K. A multimethod, multi-informant, and multidimensional perspective on psychosocial adjustment in preadolescents with spina bifida. J Consult Clin Psychol. 2003;71:782–796PubMedCrossRef
14.
Zurück zum Zitat Johnson KL, Dudgeon B, Kuehn C, Walker W. Assistive technology use among adolescents and young adults with spina bifida. Am J Public Health. 2007;97:330–336PubMedCrossRef Johnson KL, Dudgeon B, Kuehn C, Walker W. Assistive technology use among adolescents and young adults with spina bifida. Am J Public Health. 2007;97:330–336PubMedCrossRef
15.
Zurück zum Zitat 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;83:293–297PubMedCrossRef 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;83:293–297PubMedCrossRef
16.
Zurück zum Zitat Leger RR. Severity of illness, functional status, and HRQOL in youth with spina bifida. Rehabil Nurs. 2005;30:180–187; discussion 188 Leger RR. Severity of illness, functional status, and HRQOL in youth with spina bifida. Rehabil Nurs. 2005;30:180–187; discussion 188
17.
Zurück zum Zitat 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;50:456–461PubMedCrossRef 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;50:456–461PubMedCrossRef
18.
Zurück zum Zitat 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;22:784–789PubMedCrossRef 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;22:784–789PubMedCrossRef
19.
Zurück zum Zitat 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;19:952–957PubMed 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;19:952–957PubMed
20.
Zurück zum Zitat 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;43:230–235PubMedCrossRef 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;43:230–235PubMedCrossRef
21.
Zurück zum Zitat 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;19:677–685PubMedCrossRef 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;19:677–685PubMedCrossRef
22.
Zurück zum Zitat 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;14:1087–1098PubMedCrossRef 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;14:1087–1098PubMedCrossRef
23.
Zurück zum Zitat 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;139:880–886PubMedCrossRef 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;139:880–886PubMedCrossRef
24.
Zurück zum Zitat 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;3:329–341PubMedCrossRef 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;3:329–341PubMedCrossRef
25.
Zurück zum Zitat 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 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
26.
Zurück zum Zitat 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;25:175–193PubMedCrossRef 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;25:175–193PubMedCrossRef
27.
Zurück zum Zitat 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;39:800–812PubMedCrossRef 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;39:800–812PubMedCrossRef
28.
Zurück zum Zitat 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;48:114–119PubMedCrossRef 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;48:114–119PubMedCrossRef
29.
Zurück zum Zitat 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;26:25–45PubMed 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;26:25–45PubMed
Metadaten
Titel
Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents
verfasst von
Ann Flanagan, PT, PCS
Marianne Gorzkowski, BSN, RN
Haluk Altiok, MD
Sahar Hassani, MS
Kwang Woo Ahn, PhD
Publikationsdatum
01.05.2011
Verlag
Springer-Verlag
Erschienen in
Clinical Orthopaedics and Related Research® / Ausgabe 5/2011
Print ISSN: 0009-921X
Elektronische ISSN: 1528-1132
DOI
https://doi.org/10.1007/s11999-010-1651-7

Weitere Artikel der Ausgabe 5/2011

Clinical Orthopaedics and Related Research® 5/2011 Zur Ausgabe

Symposium: Myelomeningocele

Editorial: Myelomeningocele

Arthropedia

Grundlagenwissen der Arthroskopie und Gelenkchirurgie. Erweitert durch Fallbeispiele, Videos und Abbildungen. 
» Jetzt entdecken

Proximale Humerusfraktur: Auch 100-Jährige operieren?

01.05.2024 DCK 2024 Kongressbericht

Mit dem demographischen Wandel versorgt auch die Chirurgie immer mehr betagte Menschen. Von Entwicklungen wie Fast-Track können auch ältere Menschen profitieren und bei proximaler Humerusfraktur können selbst manche 100-Jährige noch sicher operiert werden.

Sind Frauen die fähigeren Ärzte?

30.04.2024 Gendermedizin Nachrichten

Patienten, die von Ärztinnen behandelt werden, dürfen offenbar auf bessere Therapieergebnisse hoffen als Patienten von Ärzten. Besonders gilt das offenbar für weibliche Kranke, wie eine Studie zeigt.

Notfall-TEP der Hüfte ist auch bei 90-Jährigen machbar

26.04.2024 Hüft-TEP Nachrichten

Ob bei einer Notfalloperation nach Schenkelhalsfraktur eine Hemiarthroplastik oder eine totale Endoprothese (TEP) eingebaut wird, sollte nicht allein vom Alter der Patientinnen und Patienten abhängen. Auch über 90-Jährige können von der TEP profitieren.

Arthroskopie kann Knieprothese nicht hinauszögern

25.04.2024 Gonarthrose Nachrichten

Ein arthroskopischer Eingriff bei Kniearthrose macht im Hinblick darauf, ob und wann ein Gelenkersatz fällig wird, offenbar keinen Unterschied.

Update Orthopädie und Unfallchirurgie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.