Pain in youths with neuromuscular disease

American Journal of Hospice and Palliative Medicine

Volumn 26, Issue 5, 2009, Pages 405-412

  Engel, Joyce M ^a   Kartin, Deborah ^a   Carter, Gregory T ^a   Jensen, Mark P ^a   Jaffe, Kenneth M ^a  

^a UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE   (United States)

Author keywords

Chronic pain; Disability; Muscular dystrophy; Myopathy; Neuromuscular disease

Indexed keywords

ANALGESIC AGENT;

ADOLESCENT; ADULT; ARTICLE; CHILD; FEMALE; HUMAN; INTERVIEW; MALE; MUSCULAR DYSTROPHY; NEUROMUSCULAR DISEASE; PAIN; PAIN ASSESSMENT; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; SLEEP DISORDER;

ADOLESCENT; ANALGESICS; CHILD; FEMALE; HUMANS; INTERVIEWS AS TOPIC; MALE; MUSCULAR DYSTROPHIES; NEUROMUSCULAR DISEASES; PAIN; PAIN MEASUREMENT; QUALITY OF LIFE; SLEEP DISORDERS; YOUNG ADULT;

EID: 70350521500     PISSN: 10499091     EISSN: None     Source Type: Journal    
DOI: 10.1177/1049909109346165     Document Type: Article

References (60)

1. Abresch RT, Carter GT, Jensen MP, Kilmer DD Assessment of pain and health-related quality of life in slowly progressive neuromuscular disease. Am J Hosp Palliat Care. 2002;19(1):39-48.
2. Miro J., Raichle KA, Carter GT,et al.Impact of biopsychosocial factors on chronic pain in persons with myotonic and facioscapulohumeral muscular dystrophy. Am J Hosp Palliat Med. 2009 [Epub ahead of print].
3. Jensen MP, Hoffman AJ, Stoelb BL, Abresch RT, Carter GT, McDonald CM Chronic pain in persons with myotonic and facioscapulohumeral muscular dystrophy. Arch Phys Med Rehabil. 2008;89(2):320-328.
4. Jensen MP, Abresch RT, Carter GT, McDonald CM Chronic pain in persons with neuromuscular disorders. Arch Phys Med Rehabil. 2005;86(6):1155-1163.
5. Carter GT, Jensen MP, Stoelb BL, Hoffman AJ, Abresch RT, McDonald CM Chronic pain in persons with myotonic muscular dystrophy, type 1. Arch Phys Med Rehabil. 2008;89(12):2382.
6. Carter GT, Jensen MP, Galer BS,et al.Neuropathic Pain in Charcot Marie Tooth disease. Arch Phys Med Rehabil. 1998;79(12):1560-1564.
7. Stoelb BL, Carter GT, Abresch RT, Purekal S., McDonald CM, Jensen MP Pain in persons with postpolio syndrome: Frequency, intensity, and impact. Arch Phys Med Rehabil. 2008;89(10):1933-1940.
8. Jensen MP, Abresch RT, Carter GT The reliability and validity of a self-reported version of the functional independence measure in persons with neuromuscular disease and chronic pain. Arch Phys Med Rehabil. 2005;86(1):116-122.
9. Hoffman AJ, Jensen MP, Abresch RT, Carter GT Chronic pain in persons with neuromuscular disorders. Phys Med Rehabil Clin N Am. 2005;16(4):1099-1112, xii.
10. Carter GT, Han JJ, Abresch RT, Jensen MP The importance of assessing quality of life in patients with neuromuscular disease. Am J Hosp Palliat Med. 2007;23(6): 493-497.
11. Abresch RT, Jensen MP, Carter GT Health quality of life in peripheral neuropathy. Phys Med Rehabil Clin N Am. 2001;12(2):461-472.
12. Tiffreau V., Viet G., Thevenon A. Pain and neuromuscular disease: The results of a survey. Am J Phys Med Rehabil. 2006;85(9):756-766.
13. Engel JM, Kartin D., Jaffe KM Exploring chronic pain in youths with Duchenne Muscular Dystrophy: A model for pediatric neuromuscular disease. Phys Med Rehabil Clin N Am. 2005;16(4):1113-1124.
14. Zebracki K., Drotar D. Pain and activity limitations in children with Duchenne or Becker muscular dystrophy. Dev Med Child Neurol. 2008;50(7):546-552.
15. Engel JM, Jensen MP, Schwartz L. Coping with chronic pain associated with cerebral palsy. Occup Ther Int. 2006;13(4):224-233.
16. Jensen MP, Engel JM, Schwartz L. Coping with cerebral palsy pain: A preliminary longitudinal study. Pain Med. 2006;7(1):30-37.
17. Engel JM, Petrina TJ, Dudgeon BJ, McKearnan KA Cerebral palsy and chronic pain: A descriptive study of children and adolescents. Phys Occup Ther Pediatr. 2005;25(4):73-84.
18. Jensen MP, Engel JM, Hoffman AJ, Schwartz L. Natural history of chronic pain and pain treatment in adults with cerebral palsy. Am J Phys Med Rehabil. 2004;83(6): 439-445.
19. Jensen MP, Engel JM, McKearnan KA, Hoffman AJ Validity of pain intensity assessment in persons with cerebral palsy: A comparison of six scales. J Pain. 2003;4(2):56-63.
20. Folstein M., Folstein SE, McHugh PR "Mini-Mental State". A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12(3): 189-198.
21. American Pain Society. Pediatric chronic pain: A position statement from the American Pain Society. http://www.ampainsoc.org/advocacy/pediatric.htm. Accessed July 25, 2005.
22. Mehling WE, Gopisetty V., Daubenmier J., Price CJ, Hecht FM, Stewart A. Body awareness: Construct and self-report measures. PLoS One. 2009;4(5):e5614.
23. Cremeens J., Eiser C., Blades M. Brief report: Assessing the impact of rating scale type, types of items, and age on the measurement of school-age children's self-reported quality of life. J Pediatr Psychol. 2007;32(2):132-138.
24. Cleeland CS, Ryan KM Pain assessment: Global use of the Brief Pain Inventory. Ann Acad Med. 1994;23(2): 129-138.
25. Daut RL, Cleeland CS, Flanery RC Development of the Wisconsin Brief Pain Questionnaire to assess pain in cancer and other diseases. Pain. 1983;17(2):197-210.
26. Jensen MP, Turner JA, Romano JM, Fisher LD Comparative reliability and validity of chronic pain intensity measures. Pain. 1999;83(2):157-162.
27. Jensen MP, Karoly P. Self-report scales and procedures for assessing pain in adults. In: Turk DC, Melzack R, eds. Handbook of Pain Assessment. New York: Guilford; 1992:132-137.
28. Rosenbaum PL, Palisano RJ, Bartlett DJ, Galuppi BE, Russell DJ Development of the Gross Motor Function Classification System for cerebral palsy. Dev Med Child Neurol. 2008;50(4):249-253.
29. Morris C., Bartlett D. Gross Motor Function Classification Systems: Impact and utility. Dev Med Child Neurol. 2004;46(1):60-65.
30. Chambers CT, Reid GJ, Craig KD, McGrath PJ, Finley GA Agreement between child and parent reports of pain. Clin J Pain. 1998;14(4):336-342.
31. Palermo TM, Zebracki K., Cox S., Newman AJ, Singer NG Juvenile idiopathic arthritis: Parent-child discrepancy on reports of pain and disability. J Rheumatol. 2004;31(9):1840-1846.
32. Ehde D., Jensen M., Engel J., Turner J., Hoffman A., Cardenas D. Chronic pain secondary to disability: A review. Clin J Pain. 2003;19(1):3-17.
33. Molton IR, Stoelb BL, Jensen MP, Ehde DM, Raichle KA, Cardenas DD Psychosocial factors and adjustment to chronic pain in spinal cord injury: Replication and cross-validation. J Rehabil Res Dev. 2009;46(1):31-42.
34. Ullrich PM, Jensen MP, Loeser JD, Cardenas DD, Weaver FM Pain among veterans with spinal cord injury. J Rehabil Res Dev. 2008;45(6):793-800.
35. Molton I., Jensen MP, Ehde DM, Carter GT, Kraft GH, Cardenas D. Coping with chronic pain among younger, middle-aged, and older adults living with neurologic injury and disease: A role for experiential wisdom. J Aging Health. 2008;20(8):972-996.
36. Ehde DM, Osborne TL, Hanley MA, Jensen MP, Kraft GH The scope and nature of pain in persons with multiple sclerosis. Mult Scler. 2006;12(5):629-638.
37. Jensen MP, Hoffman AJ, Cardenas DD Chronic pain in individuals with spinal cord injury: A survey and longitudinal study. Spinal Cord. 2005;43(12):704-712.
38. Huguet A., Miró J. The severity of chronic pain in children and adolescents: An epidemiological study. J Pain. 2008;9(3):226-236.
39. Palermo TM Impact of recurrent and chronic pain on child and family daily functioning: A critical review of the literature. J Dev Behav Pediatr. 2000;21(1):58-69.
40. Hunfeld JA, Perquin CW, Duivenvoorden HJ,et al.Chronic pain and its impact on quality of life in adolescents and their families. J Pediatr Psychol. 2001; 26(3): 145-153.
41. Strax TE Psychological issues faced by adolescents and young adults with disabilities. Pediatr Ann. 1991;20(9): 507-511.
42. Rudich Z., Lerman SF, Gurevich B., Weksler N., Shahar G. Patients' self-criticism is a stronger predictor of physician's evaluation of prognosis than pain diagnosis or severity in chronic pain patients. J Pain. 2008;9(3):210-216.
43. Beach MC, Roter DL, Wang NY, Duggan PS, Cooper LA Are physicians' attitudes of respect accurately perceived by patients and associated with more positive communication behaviors? Patient Educ Couns. 2006;62(3):347-354.
44. Oberlander TF, Gilbert CA, Chambers CT, O'Donnell ME, Craig KD Biobehavioral responses to acute pain in adolescents with a significant neurologic impairment. Clin J Pain. 1999;15(3):201-209.
45. Hinton VJ, Nereo NE, Fee RJ, Cyrulnik SE Social behavior problems in boys with Duchenne muscular dystrophy. J Dev Behav Pediatr. 2006;27(6):470-476.
46. Lester N., Lefebvre JC, Keefe FJ Pain in young adults-III: Relationships of three pain-coping measures to pain and activity interference. Clin J Pain. 1996; 12(4):291-300.
47. Palermo TM, Witherspoon D., Valenzuela D., Drotar D. Development and validation of the Child Activity Limitations Interview: A measure of pain-related functional impairment in school-age children and adolescents. Pain. 2004;109(3):461-470.
48. Eddy LL, Engel JM The impact of child disability type on the family. Rehabil Nurs. 2008;33(3):98-103.
49. McDonald CM, Abresch RT, Carter GT,et al.Profiles of neuromuscular disease. Duchenne muscular dystrophy. Am J Phys Med Rehabil. 1995;74(5 suppl):S70-S92.
50. McDonald CM, Abresch RT, Carter GT, Fowler WM Jr, Johnson ER, Kilmer DD Profiles of neuromuscular disease. Becker muscular dystrophy. Am J Phys Med Rehabil. 1995;74(5 suppl):S93-S103.
51. Johnson ER, Abresch RT, Carter GT,et al.Profiles of neuromuscular disease. Myotonic muscular dystrophy. Am J Phys Med Rehabil. 1995;74(5 suppl):S104-S116.
52. McDonald CM, Johnson ER, Abresch RT, Carter GT, Fowler WM Jr, Kilmer DD Profiles of neuromuscular disease. Limb-girdle syndromes. Am J Phys Med Rehabil. 1995;74(5 suppl):S117-S130.
53. Kilmer DD, Abresch RT, McCrory MA,et al.Profiles of neuromuscular disease. Facioscapulohumeral dystrophy. Am J Phys Med Rehabil. 1995;74(5 suppl): S131-S139.
54. Carter GT, Abresch RT, Fowler WM Jr, Johnson ER, Kilmer DD, McDonald CM Profiles of neuromuscular disease. Hereditary motor and sensory neuropathy, types I and II. Am J Phys Med Rehabil. 1995; 74(5 suppl):S140S149.
55. Carter GT, Abresch RT, Fowler WM Jr, Johnson ER, Kilmer DD, McDonald CM Profiles of neuromuscular disease. Spinal muscular atrophy. Am J Phys Med Rehabil. 1995;74(5 suppl):S150-S159.
56. Carter GT Phrenic nerve involvement in Charcot-Marie-Tooth. Muscle Nerve. 1995;18(10):1215-1216.
57. Carter GT, Bird TD Ventilatory support in facioscapulohumeral muscular dystrophy. Neurology. 2005;64(2): 401-402.
58. Carter GT, Kilmer DD, Bonekat HW, Lieberman JS, Fowler WM Jr. Evaluation of phrenic nerve and pulmonary function in hereditary motor and sensory neuropathy, type I. Muscle Nerve. 1992;15(4):459-462.
59. Smith MT, Perlis ML, Smith MS, Giles DE, Carmody TP Sleep quality and presleep arousal in chronic pain. J Behav Med. 2000;23(1):1-13.
60. Gold JI, Mahrer NE, Yee J., Palermo TM Pain, fatigue, and health-related quality of life in children and adolescents with chronic pain. Clin J Pain. 2009;25(5): 407-412.