A comparison of quality of life in children with cerebral palsy and neuromuscular diseases

Aras, Ozgen; ARAS, BAHAR; GÜNEL, Kerem Mintaze; Karaduman, A. Ayşe; YILMAZ, Öznur; TARSUSLU, Tülay; MUTLU, Akmel; TÜZÜN, Emine H.

A comparison of quality of life in children with cerebral palsy and neuromuscular diseases

Aynur Ayşe KARADUMAN, (Hacettepe Üniversitesi, Sağlık Bilimleri Fakültesi, Fizik Tedavi ve Rehabilitasyon Anabilim Dalı, Ankara, Türkiye)

Öznur YILMAZ, (Hacettepe Üniversitesi, Sağlık Bilimleri Fakültesi, Fizik Tedavi ve Rehabilitasyon Anabilim Dalı, Ankara, Türkiye)

Emine H. TÜZÜN, (Başkent Üniversitesi, Sağlık Bilimleri Fakültesi, Fizik Tedavi ve Rehabilitasyon Anabilim Dalı, Ankara, Türkiye)

Kerem Mintaze GÜNEL, (Hacettepe Üniversitesi, Sağlık Bilimleri Fakültesi, Fizik Tedavi ve Rehabilitasyon Anabilim Dalı, Ankara, Türkiye)

Bahar ARAS, (Dumlupınar Üniversitesi, Sağlık Bilimleri Fakültesi, Fizik Tedavi ve Rehabilitasyon Anabilim Dalı, Kütahya, Türkiye)

Akmel MUTLU, (Boş)

Tülay TARSUSLU, (Boş)

Özgen ARAS (Dumlupınar Üniversitesi, Sağlık Bilimleri Fakültesi, Fizik Tedavi ve Rehabilitasyon Anabilim Dalı, Kütahya, Türkiye)

Fizyoterapi Rehabilitasyon

1 0

Yıl: 2010 Cilt: 21 Sayı: 1 Sayfa Aralığı: 3 - 10 Metin Dili: Türkçe İndeks Tarihi: 29-07-2022

A comparison of quality of life in children with cerebral palsy and neuromuscular diseases

Öz:

Amaç: Bu çalışma, nöromusküler hastalığı (NMH) olan çocuklar ile serebral palsili (SP) çocuklarınsağlıkla ilişkili yaşam kalitelerini (HRQoL) karşılaştırmak amacıyla planlandı. Gereç ve yöntem:Yaşları 5-18 yaş arasında değişen, 61 serebral palsili çocuk ve 50 NMH’li olan çocuk çalışmayaalındı. Olguların özellikleri kaydedildi. Yaşam kalitesi Çocuk Sağlık Anketi Aile Formu 50 (CHQ- PF50) kullanılarak değerlendirildi. Çocukların fonksiyonel seviyeleri Barthel İndeksi iledeğerlendirildi. Sonuçlar: Gruplar arasında, CHQ-PF50’nin alt skalaları olan genel sağlık algılaması,ailesel etki-emosyonel ve ailesel etki-zaman skorlarında anlamlı fark bulundu (p<0.05). NMH’liçocuklar ile SP’li çocukların HRQoL’leri, CHQ-PF50’nin bazı alt skalalarında fark gösterdi (p<0.05).NMH’li olan çocukların genel sağlık algılaması, ailesel etki-emosyonel ve ailesel etki-zaman skorlarıSP’li çocuklarla karşılaştırıldığında daha kötüydü. Tartışma: Pediatrik grupta SP ve NMH’liçocukların ve ailelerin yaşam kaliteleri farklı şekillerde etkilenir. Kronik süreçte her iki grubunhastalığa ait özellikleri tedavi programlarının planlanması ve takipte dikkatle ele alınmalıdır.

Anahtar Kelime:

Konular: Genel ve Dahili Tıp Rehabilitasyon

Serebral palsi ve nöromusküler hastalığı olan çocuklarda yaşam kalitesinin karşılaştırılması

Öz:

Purpose: This study aimed to compare health-related quality of life (HRQoL) between childrenwith cerebral palsy (CP) and neuromuscular diseases (NMD). Material and methods: A total of 61children with CP and 50 children with NMD, ages ranged from 5-18 years participated in this study.Patients’ and parents’ characteristics were recorded. The HRQoL was assessed using the ChildHealth Questionnaire Parent Form 50 (CHQ-PF50). The children’s functional level was assessedusing Barthel Index. Results: There were statistically significant differences between the groupsin the scores of the general health perceptions, parental impact-emotional and parental impact- time subscales of the CHQ-PF50 (p<0.05). Children with CP and with NMD showed differentpatterns of HRQoL in terms of some subscales of the CHQ-PF50 (p<0.05). General healthperception and parental impact-emotional and parental impact-time scores of children with NMDwere worse than those with CP. Conclusion: In the pediatric group, quality of life of the childrenand their families affected differently in children with CP and NMD. Specific characteristics of bothdiseases should be taken into consideration while planning treatment programs and during followups.

Anahtar Kelime:

Konular: Genel ve Dahili Tıp Rehabilitasyon

Belge Türü: Makale Makale Türü: Araştırma Makalesi Erişim Türü: Erişime Açık

1. Pharoah PO, Cooke T, Rosenbloom I, et al. Trends in birth prevalence of cerebral palsy. Arch Dis Child. 1987; 62: 379-384.
2. Boyle CA, Yeargin-Allsopp M, Doernberg NS, et al. Prevalence of selected developmental disabilities in children 3-10 years of age: the Metropolitan Atlanta Developmental Disabilities Surveillance Program 199l. MMWR CDC Surveill Summ. 1996;45:1-14.
3. Dubowitz W. The Muscular Dystrophies. In: Muscle Disorders in Childhood. Second Edition. WB Saunders Company. London; 1994:34-134.
4. Drougia A, Giapros V, Krallis N, et al. Incidence and risk factors for cerebral palsy in infants with perinatal problems: a 15-year review. Early Hum. Dev. 2007; 83: 541-547.
5. Tangsrud SE, Halvorsen S. Child neuromuscular disease in southern Norway. Prevalence, age and distribution of diagnosis with special reference to non-Duchenne muscular dystrophy. Clin Genet. 1988;34:145-152.
6. Ahlström G, Gunnarsson LG, Leissner P, et al. Epidemiology of neuromuscular diseases, including the postpolio sequelae, in a Swedish county. Neuroepidemiology. 1993;12:262-269.
7. Merlini L, Stagni SB, Marri E, et al. Epidemiology of neuromuscular disorders in the under-20 population in Bologna Province, Italy. Neuromuscul Disord. 1992;2:197-200.
8. Serdaroğlu A, Cansu A, Ozkan S, et al. Prevalence of cerebral palsy in Turkish children between the ages of 2 and 16 years. Dev Med Child Neurol. 2006;48:413-416.
9. Tunca O, Karaduman A, Aras O. Nöromusküler hastalıklarda fizyoterapi rehabilitasyonun aile ve çocuk üzerindeki etkileri. Fizyoter Rehabil. 1996;8:7-12.
10. Livingston MH, Rosenbaum PL, Russell DJ, et al. Quality of life among adolescents with cerebral palsy: what does the, literature tell us? Dev Med Child Neurol. 2007;49:225-231.
11. Piccininni M, Falsini C, Pizzi A. Quality of life in hereditary neuromuscular diseases. Acta Neurol Scand. 2004;109:113-119.
12. Uchikawa K, Liu M, Hanayama K, et al. Fuctional status and muscle strength in people with Duchenne muscular dystrophy living in the community. J Rehabil Med. 2004;36:124-129.
13. Colver A. SPARCLE group. 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. 2006;6:105.
14. WHOQOL Assesment Group. Development and general psychometric properties. Soc Sci Med. 1998;46:1569-1855.
15. World Health Organization. Preamble to the Constitution of the World Health Organization. International Health Conference. New York, 19-22 June, 1946. (Official Records of the World Health Organization,no2,p100) http://www.who.int/about/definition/en/print.html, 2003.
16. Landgraft JM, Abetz L, Ware JE. In The CHQ User's Manual. Boston: The Health Institute, New England Medical Center; 1996.
17. Ozdogan H, Ruperto N, Kasapçopur O, et al. The Turkish version of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ). Clin Exp Rheumatol. 2001; 19(4 Suppl 23):158-162.
18. Küçükdeveci AA, Yavuzer G, Tennant BA, et al. Adaptation of the modified Barthel index for use in physical medicine and rehabilitation in Turkey. Scand J Rehabil Med. 2000;32:87-92.
19. Raina P, O'Donnell, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115:e626-636.
20. Nereo NE, Fee RJ, Hinton VJ. Parental stress in mothers of boys with duchenne muscular dystrophy. J Pediatr Psychol. 2003;28:473-484.
21. Natterlund B, Ahlstrom G. Activities of daily living and quality of life in persons with muscular dystrophy. J Rehabil Med. 2001;33:206-211.
22. Hinton VJ, Fee RJ, Goldstein EM, et al. Verbal and memory skills in males with Duchenne muscular dystrophy. Dev Med Child Neurol. 2007;49:123-128.
23. Dickinson H, Parkinson K, McManus V, et al. Assessment of data quality in a multi-centre crosssectional study of participation and quality of life of children with cerebral palsy. BMC Public Health. 2006;6: 273.
24. Rosenbaum PL, Livingston MH, Palisano RJ, et al. Quality of life and health-related quality of life of adolescents with cerebral palsy. Dev Med Child Neurol. 2007;49:516-521.
25. Schneider JW, Gurucharri LM, Gutierrez AL, et al. Health related quality of life and functional outcome measures for children with cerebral palsy. Dev Med Child Neurol. 2001;43:601-608.
26. Wake M, Salmon L, Reddihough D. Health status of Australian children with mild to severe cerebral palsy: cross-sectional survey using the Child Health Questionnaire. Dev Med Child Neurol. 2003;45:194-199.
27. Bakker JP, De Groot IJ, Beelen A, et al. Predictive factors of cessation of ambulation in patients with Duchenne Muscular Dystrophy. Am J Phys Med Rehabil. 2002;8l:906-912.
28. Wiley R, Renk K. Psychological correlates of quality of life in children with cerebral palsy. J Dev Phys Disabil. 2007;19:427-447.
29. Curran AL, Sharples PM, White C, et al. Time costs of caring for children with severe disabilities compared with caring for children without disabilities. Dev Med Child Neurol. 2001;43:529-533.

APA	Karaduman A, YILMAZ Ö, TÜZÜN E, GÜNEL K, ARAS B, MUTLU A, TARSUSLU T, Aras O (2010). A comparison of quality of life in children with cerebral palsy and neuromuscular diseases. , 3 - 10.
Chicago	Karaduman A. Ayşe,YILMAZ Öznur,TÜZÜN Emine H.,GÜNEL Kerem Mintaze,ARAS BAHAR,MUTLU Akmel,TARSUSLU Tülay,Aras Ozgen A comparison of quality of life in children with cerebral palsy and neuromuscular diseases. (2010): 3 - 10.
MLA	Karaduman A. Ayşe,YILMAZ Öznur,TÜZÜN Emine H.,GÜNEL Kerem Mintaze,ARAS BAHAR,MUTLU Akmel,TARSUSLU Tülay,Aras Ozgen A comparison of quality of life in children with cerebral palsy and neuromuscular diseases. , 2010, ss.3 - 10.
AMA	Karaduman A,YILMAZ Ö,TÜZÜN E,GÜNEL K,ARAS B,MUTLU A,TARSUSLU T,Aras O A comparison of quality of life in children with cerebral palsy and neuromuscular diseases. . 2010; 3 - 10.
Vancouver	Karaduman A,YILMAZ Ö,TÜZÜN E,GÜNEL K,ARAS B,MUTLU A,TARSUSLU T,Aras O A comparison of quality of life in children with cerebral palsy and neuromuscular diseases. . 2010; 3 - 10.
IEEE	Karaduman A,YILMAZ Ö,TÜZÜN E,GÜNEL K,ARAS B,MUTLU A,TARSUSLU T,Aras O "A comparison of quality of life in children with cerebral palsy and neuromuscular diseases." , ss.3 - 10, 2010.
ISNAD	Karaduman, A. Ayşe vd. "A comparison of quality of life in children with cerebral palsy and neuromuscular diseases". (2010), 3-10.

APA	Karaduman A, YILMAZ Ö, TÜZÜN E, GÜNEL K, ARAS B, MUTLU A, TARSUSLU T, Aras O (2010). A comparison of quality of life in children with cerebral palsy and neuromuscular diseases. Fizyoterapi Rehabilitasyon, 21(1), 3 - 10.
Chicago	Karaduman A. Ayşe,YILMAZ Öznur,TÜZÜN Emine H.,GÜNEL Kerem Mintaze,ARAS BAHAR,MUTLU Akmel,TARSUSLU Tülay,Aras Ozgen A comparison of quality of life in children with cerebral palsy and neuromuscular diseases. Fizyoterapi Rehabilitasyon 21, no.1 (2010): 3 - 10.
MLA	Karaduman A. Ayşe,YILMAZ Öznur,TÜZÜN Emine H.,GÜNEL Kerem Mintaze,ARAS BAHAR,MUTLU Akmel,TARSUSLU Tülay,Aras Ozgen A comparison of quality of life in children with cerebral palsy and neuromuscular diseases. Fizyoterapi Rehabilitasyon, vol.21, no.1, 2010, ss.3 - 10.
AMA	Karaduman A,YILMAZ Ö,TÜZÜN E,GÜNEL K,ARAS B,MUTLU A,TARSUSLU T,Aras O A comparison of quality of life in children with cerebral palsy and neuromuscular diseases. Fizyoterapi Rehabilitasyon. 2010; 21(1): 3 - 10.
Vancouver	Karaduman A,YILMAZ Ö,TÜZÜN E,GÜNEL K,ARAS B,MUTLU A,TARSUSLU T,Aras O A comparison of quality of life in children with cerebral palsy and neuromuscular diseases. Fizyoterapi Rehabilitasyon. 2010; 21(1): 3 - 10.
IEEE	Karaduman A,YILMAZ Ö,TÜZÜN E,GÜNEL K,ARAS B,MUTLU A,TARSUSLU T,Aras O "A comparison of quality of life in children with cerebral palsy and neuromuscular diseases." Fizyoterapi Rehabilitasyon, 21, ss.3 - 10, 2010.
ISNAD	Karaduman, A. Ayşe vd. "A comparison of quality of life in children with cerebral palsy and neuromuscular diseases". Fizyoterapi Rehabilitasyon 21/1 (2010), 3-10.