Occupational Performance of Pediatric Patients with Neuromuscular Diseases: Perspectives of Patients and Their Parents

Abstract

Purpose: Neuromuscular disorders consists of a group of various hereditary and acquired diseases. Activity and participation are important issues in children with neuromuscular disorders for social inclusion in community. The study aimed to analyse and compare the occupational performance of children with neuromuscular disorders from the perspectives of children and their parents.
Methods: Fifty-seven children with neuromuscular disorders and their parents were included in the study. Brooke Upper and Lower Extremity Functional Classifications were used to determine the functional levels of children. The occupational performance was analyzed by Canadian Occupational Performance Measurement. Disability was investigated by using Pediatric Evaluation of Disability Inventory and functional independence by Wee Functional Independence Measurement.
Results: Fifteen (26.32%) girls and 42 (73.68%) boys with neuromuscular disorders and their parents were included in the study. The mean ages of the children were 9.66±3.16 years. Functional mobility activities were determined to be the most important occupational area by both the children and parents. The second most important area was their social roles for children and independence-oriented activities for parents. Occupational performance score of the children was 6.69±2.98 from the point of children, while 5.69±2.84 according to their parents (p<0.05). Occupational satisfaction of children with neuromuscular disorders was scored 6.29±3.18 by children, while 4.82±3.21 by their parents (p<0.05).
Conclusion: Except for the concurrence in most important occupational area, no consensus was formed between children and parents in terms of children’s occupational performance and satisfaction scores. It was observed that the activity performance and satisfaction expectations of both children and families are different.

Keywords

• neuromuscular diseases
• Activities of daily life
• Parent
• Occupation
• Performance

Nöromüsküler Hastalıkları Olan Pediatrik Hastaların Aktivite Performansı: Hasta ve Ebeveynlerinin Bakış Açıları

Abstract

Amaç: Nöromusküler hastalıklar çeşitli kalıtsal ve edinsel hastalıklardan oluşan bir grup bozukluktan oluşur. Aktivite ve katılım, nöromusküler hastalığa sahip olan çocuklarda toplumsal katılım için oldukça önemlidir. Bu çalışma, nöromusküler hastalığı olan çocukların aktivite performanslarını çocuk ve ebeveyn gözünden analiz edip karşılaştırmayı amaçlamıştır.
Yöntem: Çalışmaya 57 nöromusküler hastalığa sahip olan çocuk ve ebeveynleri dahil edildi. Çocukların fonksiyonel seviyelerini belirlemek için Brooke Üst ve Alt Ekstremite Fonksiyonel Sınıflandırmaları kullanıldı. Aktivite performansı Kanada Aktivite Performans Ölçümü ile analiz edildi. Özür seviyesini belirlemek için Pediatrik Özürlülük Değerlendirme Envanteri ve fonksiyonel bağımsızlık için Çocuklar için Fonksiyonel Bağımsızlık Ölçeği kullanıldı.
Bulgular: Çalışmaya nöromusküler hastalığı olan 15 (%26,32) kız, 42 (%73,68) erkek çocuk ve anne babası dahil edildi. Çocukların yaş ortalaması 9,66±3,16 yıl idi. Fonksiyonel mobilite aktiviteleri hem çocuklar hem de ebeveynleri tarafından bildirilen en önemli aktivite alanıdır. İkinci önemli aktivite alanı ise çocuklar tarafından sosyal roller, ebeveynleri tarafından bağımsızlıkla ilişkili aktiviteler olarak belirlendi. Çocukların aktivite performans puanları kendilerine göre 6,69±2,98 olarak belirlenirken ebeveynlerine göre 5,69±2,84 puan idi (p<0,05). Aktivite memnuniyet skoru ise çocuklarda 6,29±3,18 iken ebeveynleri için 4,82±3,21 idi (p<0,05).
Sonuç: En önemli aktivite alanı konusundaki fikir birliği dışında, çocuklar ve ebeveynleri arasında çocukların aktivite performansı ve memnuniyet skorları konularında herhangi bir fikir birliğine varılamadı. Gerek çocukların gerekse de ailelerin aktivite performans ve memnuniyet beklentilerinin farklı olduğu tespit edildi.

Keywords

• Nöromüsküler hastalıklar
• günlük yaşam aktiviteleri
• ebeveyn
• aktivite
• performans
• çocuklar

References

1. 1. V. D. Muscle Disorders in Childhood. 2nd ed. Philadelphia: W. B. Saunders Company Ltd; 1995.
2. 2. Anderson PB RT. Neuromuscular disorders of childhood. Neurology. 1999;11:497-503.
3. 3. Fowler W. Role of physical activity and exercise training in neuromuscular diseases. Am J Phys Med Rehabil. 2002;11:187-95.
4. 4. Johnson LB FJ, Abresch RT. Physical therapy evaluation and management in neuromuscular diseases. Phys Med Rehabil Clin N Am. 2012;23:633-651.
5. 5. McDonald CM. Physical activity, health impairments, and disability in neuromuscular disease. Am J Phys Med Rehabil. 2002;81:S108-120.
6. 6. Bendixen RM, Lott DJ, Senesac C, et al. Participation in daily life activities and its relationship to strength and functional measures in boys with Duchenne muscular dystrophy. Disabil Rehabil. 2014;36:1918-1923.
7. 7. Straub V. Standards of care in neuromuscular fields. BMC Musculoskelet Disord. 2013;14(Suppl 2):O12.
8. 8. WHO. International Classification of Functioning, Disability and Health, World Health Organization; Geneva: 2001.

9. 9. Law M, Baptiste S, Carswel A, et al. Canadian Occupational Performance Measure. CAOT Publications: ACE; 2005.
10. 10. Verkerk G, Wolf, MJ, Louwers, AM et al. The reproducibility and validity of the Canadian Occupational Performance Measure in parents of children with disabilities. Clin. Rehabil. 2006;20:980-988.
11. 11. Law MD J, Pollock N, et al. Family- centered functional therapy for children with cerebral palsy: an emerging practice model. Phys Occup Ther Pediatr. 1998;18:83-102.
12. 12. Pollock N, Stewart D. Occupational performance needs of school-aged children with physical disabilities in the community. Family-Centred Assessment Intervention. Pediatr Rehabil. 1998:55-68.
13. 13. Atasavun Uysal S, Duger T. Visual perception training on social skills and activity performance in low-vision children. Scand J Occup Ther. 2012;19:33-41.
14. 14. Bottos M, Bolcati C, Sciuto L, et al. Powered wheelchairs and independence in young children with tetraplegia. Dev Med Child Neurol. 2001;43:769-777.
15. 15. Fragala MA, O’Neil ME, Russo KJ, et al. Impairment, disability, and satisfaction outcomes after lower-extremity botulinum toxin A injections for children with cerebral palsy. Pediatr Phys Ther. 2002;14:132-144.
16. 16. Law M, Russell D, Pollock N, et al. A comparison of intensive neurodevelopmental therapy plus casting and a regular occupational therapy program for children with cerebral palsy. Dev Med Child Neurol. 1997;39:664-670.
17. 17. Miller L, Polatajko H, Missiuna C, et al. A pilot trial of a cognitive treatment for children with developmental coordination disorder. Hum Mov Sci. 2001;20:183-210.
18. 18. VanLeit B, Crowe TK. Outcomes of an occupational therapy program for mothers of children with disabilities: impact on satisfaction with time use and occupational performance. Am J Occup Ther. 2002;56:402-410.
19. 19. Wallen MA, O’Flaherty SJ, Waugh M-CA. Functional outcomes of intramuscular botulinum toxin type a in the upper limbs of children with cerebral palsy: a phase II trial1. Arch Phys Med Rehab. 2004;85:192-200.
20. 20. Brooke MH, Griggs RC, Mendell JR, et al. Clinical trial in Duchenne dystrophy. I. The design of the protocol. Muscle Nerve. 1981;4:186-197.
21. 21. Alemdaroğlu I, Karaduman A, Yilmaz ÖT, et al. Different types of upper extremity exercise training in Duchenne muscular dystrophy: effects on functional performance, strength, endurance, and ambulation. Muscle Nerve. 2015;51:697-705.
22. 22. Law M, Baptiste S, Carswell A, et al. Canadian Occupational Performance Measure (COPM): CAOT publications; 2014. , 23. Pan AW, Chung L, Hsin‐Hwei G. Reliability and validity of the Canadian Occupational Performance Measure for clients with psychiatric disorders in Taiwan. Occup Ther Int. 2003;10:269-277.
23. 24. Cup EH, Scholte op Reimer W, Thijssen MC, et al. Reliability and validity of the Canadian Occupational Performance Measure in stroke patients. Clin Rehabil. 2003;17:402-409.
24. 25. McColl MA, Paterson M, Davies D, et al. Validity and community utility of the Canadian Occupational Performance Measure. Can J Occup Ther. 2000;67:22-30.
25. 26. Ho ES, Curtis CG, Clarke HM. Pediatric Evaluation of Disability Inventory: its application to children with obstetric brachial plexus palsy. J Hand Surg-Am. 2006;31:197-202.
26. 27. Feldman AB, Haley SM, Coryell J. Concurrent and construct validity of the Pediatric Evaluation of Disability Inventory. Phys Ther. 1990;70:602-610.
27. 28. Haley S, Coster W, Ludlow L, et al. Pediatric evaluation of disability inventory. Assessing children’s well-being: a handbook of measures. 2003;11:13.
28. 29. Berg M, Jahnsen R, Frøslie KF, et al. Reliability of the pediatric evaluation of disability inventory (PEDI). Phys Occup Ther Pediatr. 2004;24:61-77.
29. 30. Erkin G, Elhan AlH, Aybay C, et al. Validity and reliability of the Turkish translation of the Pediatric Evaluation of Disability Inventory (PEDI). Disabil Rehabil. 2007;29:1271-1279.
30. 31. Msall ME, DiGaudio K, Duffy LC, et al. WeeFIM: normative sample of an instrument for tracking functional independence in children. Clin Pediatr. 1994;33:431-438.
31. 32. Ottenbacher KJ, Msall ME, Lyon N, et al. The WeeFIM instrument: its utility in detecting change in children with developmental disabilities. Arch Phys Med Rehab. 2000;81:1317-1326.
32. 33. Aybay C, Erkin G, Elhan AH, et al. ADL assessment of nondisabled Turkish children with the WeeFIM instrument. Am J Phys Med Rehab. 2007;86:176-182.
33. 34. Strehle EM. Long-term management of children with neuromuscular disorders. J Pediat-Brazil. 2009;85:379-384.
34. 35. Strehle EM, Straub V. Recent advances in the management of Duchenne muscular dystrophy. Arch Dis Child. 2015;100:1173-1177.
35. 36. Eenakker EA MN, Fock JM, Brouwer OF, et al. Functional ability and muscle force in healthy children and ambulant Duchenne muscular dystrophy patients. Eur J Paediatr Neurol. 2005; 9:387-393.
36. 37. Bendixen RM, Senesac C, Lott DJ, et al. Participation and quality of life in children with Duchenne muscular dystrophy using the International Classification of Functioning, Disability, and Health. Health Qual Life Out. 2012;10:43.
37. 38. Boyer F, Drame M, Morrone I, et al. Factors relating to carer burden for families of persons with muscular dystrophy. J Rehabil Med Suppl. 2006;38:309-315.
38. 39. Bothwell JE, Dooley JM, Gordon KE, et al. Duchenne muscular dystrophy-parental perceptions. Clin Pediatr. 2002;41:105-109.
39. 40. Emery A MF. Duchenne Muscular Dystrophy. 3rd ed. Oxford: Oxford University Press; 2003.
40. 41. Livesey D, Lum Mow M, Toshack T, et al. The relationship between motor performance and peer relations in 9- to 12-year-old children. Child Care Hlth Dev. 2011;37:581-588.
41. 42. Spaargaren E, Ahmed J, van Ouwerkerk WJ, et al. Aspects of activities and participation of 7-8 year-old children with an obstetric brachial plexus injury. Eur J Paediatr Neuro. 2011;15:345-352.
42. 43. Donnelly C ONC, Bauer M, Letts L. Canadian Occupational Performance Measure (COPM) in primary care: A profile of practice. Am J Occup Ther. 2017;71:7106265010p1-p8.
43. 44. Calderon-Miranda WG, Alvis-Miranda HR, Alcala-Cerra G, et al. Bilateral traumatic basal ganglia hemorrhage associated with epidural hematoma: Case report and literature review. Bull Emerg Trauma. 2014;2:130-132.
44. 45. Brown M, Gordon WA. Impact of impairment on activity patterns of children. Arch Phys Med Rehab. 1987;68:828-832.
45. 46. Novak I, Honan I. Effectiveness of paediatric occupational therapy for children with disabilities: A systematic review. Aust Occup Ther J. 2019;66:258-273.