Psychosocial adjustment in males with Duchenne muscular dystrophy: Psychometric properties and clinical utility of a parent-report questionnaire

Journal of Pediatric Psychology

Volumn 34, Issue 1, 2009, Pages 69-78

  Hendriksen, Jos G M ^a,b,c   Poysky, James T ^d   Schrans, Debby G M ^a,b   Schouten, Eric G W ^e   Aldenkamp, Albert P ^a,c   Vles, Johan S H ^c  

^a EPILEPSY CENTER KEMPENHAEGHE   (Netherlands)

^b Childhood Rehabilitation Centre   (Netherlands)

^c MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

^d TEXAS CHILDREN S HOSPITAL   (United States)

^e MAASTRICHT UNIVERSITY   (Netherlands)

Author keywords

Duchenne muscular dystrophy; Psychosocial adjustment; Questionnaire study

Indexed keywords

STEROID;

ADOLESCENT; ADULT; AGE; AGE DISTRIBUTION; ARTICLE; CHILD; CHRONIC DISEASE; COMPARATIVE STUDY; CONTROLLED STUDY; DISEASE ASSOCIATION; DUCHENNE MUSCULAR DYSTROPHY; HUMAN; MAJOR CLINICAL STUDY; MALE; OUTCOME ASSESSMENT; PARENT; PERSONAL ADJUSTMENT AND ROLE SKILLS SCALE; POPULATION; PRESCHOOL CHILD; PSYCHOMETRY; QUESTIONNAIRE; RATING SCALE; RELIABILITY; SCHOOL CHILD; SCORING SYSTEM; SOCIAL PSYCHOLOGY; VALIDITY;

ACTIVITIES OF DAILY LIVING; ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADRENAL CORTEX HORMONES; AGE FACTORS; ANXIETY; CHILD; CHILD, PRESCHOOL; DEPRESSION; HUMANS; MALE; MASS SCREENING; MUSCULAR DYSTROPHY, DUCHENNE; PEER GROUP; PERSONALITY ASSESSMENT; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; REPRODUCIBILITY OF RESULTS; SICK ROLE; SOCIAL ADJUSTMENT; STATISTICS AS TOPIC;

EID: 58549114191     PISSN: 01468693     EISSN: 1465735X     Source Type: Journal    
DOI: 10.1093/jpepsy/jsn067     Document Type: Article

References (46)

1. Abi Daoud, M. S., Dooley, J. M., & Gordon, K. E. (2004). Depression in parents of children with Duchenne muscular dystrophy. Pediatric Neurology, 31, 16-19.
2. Achenbach, T. M., & Ruffle, T. M. (2000). The child behavior checklist and related forms for assessing behavioral/emotional problems and competencies. Pediatrics in Review/American Academy of Pediatrics, 21, 265-271.
3. Anderson, J. L., Head, S. I., Rae, C., & Morley, J. W. (2002). Brain function in Duchenne muscular dystrophy. Brain, 125, 4-13.
4. Biggar, W. D., Harris, V. A., Eliasoph, L., & Alman, B. (2006). Long-term benefits of deflazacort treatment for boys with Duchenne muscular dystrophy in their second decade. Neuromuscular Disorders, 16, 249-255.
5. Buck, D., Smith, M., Appleton, R., Baker, G. A., & Jacoby, A. (2007). The development and validation of the Epilepsy and Learning Disabilities Quality of Life (ELDQOL) scale. Epilepsy & Behavior, 10, 38-43.
6. Chernoff, R. G., Ireys, H. T., DeVet, K. A., & Kim, Y. J. (2002). A randomised controlled trial of a community based support program for families of children with chronic illness: pediatric outcomes. Archives of Pediatric and Adolescent Medicine, 156, 533-539.
7. Cotton, S., Voudouris, N. J., & Greenwood, K. M. (2001). Intelligence and Duchenne muscular dystrophy: full-scale, verbal, and performance intelligence quotients. Developmental Medicine and Child Neurology, 43, 497-501.
8. Cotton, S., Voudouris, N. J., & Greenwood, K. M. (2005). Association between intellectual functioning and age in children with Duchenne muscular dystrophy: further results from a meta-analysis. Developmental Medicine and Child Neurology, 73, 257-265.
9. Darke, J., Bushby, K., Le Couteur, A., & McConachie, H. (2006). Survey of behaviour problems in children with neuromuscular diseases. European Journal of Paediatric Neurology, 10, 129-134.
10. Dubowitz, V. (2005). Prednisone for Duchenne muscular dystrophy. Lancet Neurology, 4(5), 264.
11. Eiser, C. (1990). Chronic childhood disease: and introduction to psychological theory and research. Cambridge, UK: Cambridge University Press.
12. Eiser, C., & Jenney, M. (2007). Measuring quality of life. Archives of Disease in Childhood, 92, 348-350.
13. Emery, A. E. H., & Muntoni, F. (2003). Duchenne muscular dystrophy. Oxford, New York: Oxford University Press.
14. Firth, M., Gardner-Medwin, D., Hosking, G., & Wilkinson, E. (1983). Interviews with parents of boys suffering from Duchenne muscular dystrophy. Developmental Medicine and Child Neurology, 25, 466-471.
15. Fitzpatrick, C., Barry, C., & Garvey, C. (1986). Psychiatric disorder among boys with Duchenne muscular dystrophy. Developmental Medicine and Child Neurology, 28, 589-595.
16. Gesten, E. L. (1976). Health resources inventory: The development of a measure of the personal and social competence of primary grade children. Journal of Consulting and Clinical Psychology, 44, 775-786.
17. Goodman, R. (1997). The Strengths And Difficulties questionnaire: a research note. Journal of Child Psychology and Psychiatry, 38, 581-586.
18. Harris, E. S., Canning, R. D., & Kelleher, K. J. (1996). A comparison of measures of adjustment, symptoms, and impairment among children with chronic medical conditions. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 1025-1032.
19. Hendriksen, J. G. M., & Vles, J. S. (2006). Are males with Duchenne muscular dystrophy at risk for reading disabilities? Pediatric Neurology, 34, 296-300.
20. Hendriksen, J. G. M., & Vles, J. S. H. (2008). Neuropsychiatric disorders in males with Duchenne muscular dystrophy: frequency rate of attention-deficit/hyperactivity disorders, autism spectrum and obsessive-compulsive disorders. Journal of Child Neurology, 23, 477-481.
21. Hinton, V. J., Fee, R. J., Goldstein, E. M., & De Vivo, D. C. (2007). Verbal and memory skills in males with Duchenne muscular dystrophy. Developmental Medicine and Child Neurology, 49, 123-128.
22. Hinton, V. J., & Goldstein, E. M. (2007). Duchenne muscular dystrophy. In M. M. M. Mazzocco, & S. S. Ross (Eds.), Neurogenetic developmental disorders (pp. 105-131). Cambridge, MA: MIT Press.
23. Hinton, V. J., Nereo, N. E., Fee, R. J., & Cyrulnik, S. E. (2006). Social behavior problems in boys with Duchenne muscular dystrophy. Journal of Developmental and Behavioral Pediatrics, 27, 470-476.
24. Hu, I., & Bentler, P. M. (1999). Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Structural Equation Modeling, 6, 1-55.
25. Immelt, S. (2006). Psychological adjustment in young children with chronic medical conditions. Journal of Pediatric Nursing, 21, 362-377.
26. Jöreskog, K. G., & Sörbom, D. (1999). LISREL 8.30. Chicago: Scientific International.
27. Landgraf, J. H., Abetz, L., & Ware, J. E. (1999). The CHQ user's manual. Boston, MA: Health Act.
28. LeBlanc, L. A., Goldsmith, T., & Patel, D. R. (2003). Behavioral aspects of chronic illness in children and adolescents. Pediatric Clinics of North America, 50, 859-878.
29. LeBovidge, J. S., Lavigne, J. V., & Miller, M. L. (2005). Chronic arthritis of childhood: the roles of illness-related stress and attitude toward illness. Journal of Pediatric Psychology, 30, 273-286.
30. Leibowitz, D., & Dubowitz, V. (1981). Intellect and behaviour in Duchenne muscular dystrophy. Developmental Medicine and Child Neurology, 23, 577-590.
31. Miller, G., Tunnecliffe, M., & Douglas, P. S. (1985). IQ, prognosis and Duchenne muscular dystrophy. Brain & Development, 7, 7-9.
32. Moos, R. H., & Tsu, V. D. (1977). The crisis of physical illness: an overview. In R. H. Moos (Ed.), Coping with physical illness (pp. 3-21). London, UK: Plenium Medical Book Company.
33. Nereo, N. E., Fee, R. J., & Hinton, V. J. (2003). Parental stress in mothers of boys with Duchenne muscular dystrophy. Journal of Pediatric Psychology, 28, 473-484.
34. Parker, G., Yiming, C., Tan, S., & Rutter, M. (2001). The development of a brief screening measure of emotional distress in children. Journal of Child Psychology and Psychiatry, 42, 221-225.
35. Perrin, E. C., Stein, R. E., & Drotar, D. (1991). Cautions in using Child Behavior Checklist: observations based on research about children with a chronic illness. Journal of Pediatric Psychology, 16, 411-421.
36. Pless, I. B., Feeley, N., Gottlieb, L., Rowat, K. Dougherty, G., & Willard, B. (1994). A randomized trial of nursing intervention to promote the adjustment of children with chronic physical disorders. Pediatrics, 94, 70-75.
37. Polakoff, R. J., Morton, A. A., Koch, K. D., & Rios, C. M. (1998). The psychosocial and cognitive impact of Duchenne's muscular dystrophy. Seminars in Pediatric Neurology, 5, 116-123.
38. Poysky, J. (2007). Behavior patterns in Duchenne muscular dystrophy: report on the Parent Project Muscular Dystrophy behavior workshop 8-9 December 2006. Neuromuscular Disorders, 17, 986-994.
39. Rahbek, J., Werge, B., Madsen, A., Marquardt, J., Steffensen, B. F., & Jeppesen, J. (2005). Adult life with Duchenne muscular dystrophy: observations among an emerging and unforeseen patient population. Pediatric Rehabilitation, 8, 17-28.
40. Sattler, J. M. Assessment of children: cognitive applications (4th ed.). San Diego: Jerome M. Sattler, Publisher, Inc.
41. Stein, M. T., Pachter, L. M., Schwartz, L., & Taras, H. (2004). Disruptive classroom behavior in an Amish school-aged child with muscular dystrophy. Pediatrics, 114, 1501-1505.
42. Stein, R. E. K., & Jessop, D. J. (1990). Manual for Personal Adjustment and Role Skills Scale III (PARS III). Bronx, New York: Unpublished manuscript.
43. Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39, 800-812.
44. Walker, D. K., Stein, R. E., Perrin, E. C., & Jessop, D. J. (1990). Assessing psychosocial adjustment of children with chronic illnesses: a review of the technical properties of PARS III. Journal of Developmental and Behavioral Pediatrics, 11, 116-121.
45. Witt, W. P., Riley, A. W., & Coiro, M. J. (2003). Childhood functional status, family stressors, and psychosocial adjustment among school-aged children with disabilities in the United States. Archives of Pediatric and Adolescent Medicine, 157, 687-695.
46. Wu, J. Y., Kuban, K. C., Allred, E., Shapiro, F., & Darras, B. T. (2005). Association of Duchenne muscular dystrophy with autism spectrum disorder. Journal of Child Neurology, 20, 790-795.