Physical, cognitive, and psychosocial predictors of functional disability and health-related quality of life in adolescents with neurofibromatosis-1

Pain Research and Treatment

Volumn 2012, Issue , 2012, Pages

  Garwood, Molly M ^a   Bernacki, Jessica M ^b   Fine, Kathi M ^b   Hainsworth, Keri R ^c   Davies, W Hobart ^b   Klein Tasman, Bonita P ^b  

^a CHILDREN S HOSPITAL OF WISCONSIN   (United States)

^b UNIVERSITY OF WISCONSIN MILWAUKEE   (United States)

^c MEDICAL COLLEGE OF WISCONSIN   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84873845265     PISSN: 20901542     EISSN: 20901550     Source Type: Journal    
DOI: 10.1155/2012/975364     Document Type: Article

References (41)

1. Lynch T. M., Gutmann D. H., Neurofibromatosis 1. Neurologic Clinics 2002 20 3 841 865 2-s2.0-0036699110 10.1016/S0733-8619(01)00019-6 (Pubitemid 35154470)
2. Moore B. D., Denckla M. B., Yeates K. O., Ris M. D., Taylor H.G., Neurofibromatosis. Pediatric Neuropsychology: Research, Theory, and Practice 2000 New York, NY, USA The Guilford Press 149 167
3. Friedman J. M., Friedman J. M., Gutmann D. H., Maccollin M., Ricccardi V. M., Evaluation and management. Neurofibromatosis: Phenotype, Natural History, and Pathogenesis 1999 Baltimore, Md, USA The Johns Hopkins University Press 87 109
4. Chrusciel D., Chibnall J., Karis N., Johnson L., Tait R., Nayak A., Morefield C., Timothy J., Geller T., Study of the prevalence of pain in children and adolescents with Neurofibromatosis 1. Proceedings of the Children's Tumor Foundation Conference 2009 Portland, Ore, USA
5. Créange A., Zeller J., Rostaing-Rigattieri S., Brugières P., Degos J. D., Revuz J., Wolkenstein P., Neurological complications of neurofibromatosis type 1 in adulthood. Brain 1999 122 3 473 481 2-s2.0-0343856490 10.1093/brain/122.3.473 (Pubitemid 29110522)
6. Clementi M., Battistella P. A., Rizzi L., Boni S., Tenconi R., Headache in patients with neurofibromatosis type. Headache 1996 36 1 10 13 2-s2.0-0030027295 (Pubitemid 126500238)
7. DiMario F. J., Langshur S., Headaches in patients with neurofibromatosis-1. Journal of Child Neurology 2000 15 4 235 238 2-s2.0-0342803213 (Pubitemid 30331438)
8. Ozonoff S., Cognitive impairment in neurofibromatosis type 1. American Journal of Medical Genetics 1999 89 45 52 (Pubitemid 30033176)
9. Cutting L. E., Huang G. H., Zeger S., Koth C. W., Thompson R. E., Denckla M. B., Growth curve analyses of neuropsychological profiles in children with neurofibromatosis Type 1: specific cognitive tests remain "spared" and "impaired" over time. Journal of the International Neuropsychological Society 2002 8 6 838 846 2-s2.0-0036742188 10.1017/S135561770286012X
10. Ferner R. E., Hughes R. A. C., Weinman J., Intellectual impairment in neurofibromatosis 1. Journal of the Neurological Sciences 1996 138 1-2 125 133 2-s2.0-0029882903 10.1016/0022-510X(96)00022-6 (Pubitemid 26194284)
11. North K., Hyman S., Barton B., Cognitive deficits in neurofibromatosis 1. Journal of Child Neurology 2002 17 8 605 612 2-s2.0-0036700297 (Pubitemid 35203622)
12. Hyman S. L., Shores A., North K. N., The nature and frequency of cognitive deficits in children with neurofibromatosis type 1. Neurology 2005 65 7 1037 1044 2-s2.0-26444599545 10.1212/01.wnl.0000179303.72345.ce (Pubitemid 41429628)
13. Barton B., North K., Social skills of children with neurofibromatosis type 1. Developmental Medicine and Child Neurology 2004 46 8 553 563 2-s2.0-4043092755 10.1017/S0012162204000921 (Pubitemid 39077137)
14. Counterman A. P., Saylor C. F., Pai S., Psychological adjustment of children and adolescents with neurofibromatosis. Children's Health Care 1995 24 4 223 234
15. Johnson N. S., Saal H. M., Lovell A. M., Schorry E. K., Social and emotional problems in children with neurofibromatosis type 1: evidence and proposed interventions. Journal of Pediatrics 1999 134 6 767 772 2-s2.0-0033505567 (Pubitemid 30186824)
16. McKenna S. P., Doward L., Functional disability and quality of life in patients with ankylosing spondylitis. Rheumatology International 2004 24 1 57 58 2-s2.0-0842265453 10.1007/s00296-003-0376-2 (Pubitemid 38168118)
17. Varni J. W., Seid M., Rode C. A., The PedsQL: measurement model for the pediatric quality of life inventory. Medical Care 1999 37 2 126 139 2-s2.0-0033073557 10.1097/00005650-199902000-00003
18. Eiser C., Morse R., Can parents rate their child's health-related quality of life? Results of a systematic review. Quality of Life Research 2001 10 4 347 357 2-s2.0-0035161833 10.1023/A:1012253723272 (Pubitemid 33079013)
19. Claar R. L., Walker L. S., Functional assessment of pediatric pain patients: psychometric properties of the Functional Disability Inventory. Pain 2006 121 1-2 77 84 2-s2.0-32944464050 10.1016/j.pain.2005.12.002 (Pubitemid 43261634)
20. Powers S. W., Andrasik F., Biobehavioral treatment, disability, and psychological effects of pediatric headache. Pediatric Annals 2005 34 6 461 465 2-s2.0-21344437057 (Pubitemid 40904409)
21. Palermo T. M., Riley C. A., Mitchell B. A., Daily functioning and quality of life in children with sickle cell disease pain: relationship with family and neighborhood socioeconomic distress. Journal of Pain 2008 9 9 833 840 2-s2.0-49649112089 10.1016/j.jpain.2008.04.002
22. Wolkenstein P., Zeller J., Revuz J., Ecosse E., Leplège A., Quality-of-life impairment in neurofibromatosis type 1: a cross-sectional study of 128 cases. Archives of Dermatology 2001 137 11 1421 1425 2-s2.0-0035170448 (Pubitemid 33064237)
23. Graf A., Landolt M. A., Mori A. C., Boltshauser E., Quality of life and psychological adjustment in children and adolescents with neurofibromatosis type 1. Journal of Pediatrics 2006 149 3 348 353 2-s2.0-33748159785 10.1016/j.jpeds.2006.04.025 (Pubitemid 44308424)
24. Krab L. C., Oostenbrink R., de Goede-Bolder A., Aarsen F. K., Elgersma Y., Moll H. A., Health-related quality of life in children with neurofibromatosis type 1: contribution of demographic factors, disease-related factors, and behavio. Journal of Pediatrics 2009 154 3 420 425 2-s2.0-60249097471 10.1016/j.jpeds.2008.08.045
25. Oostenbrink R., Spong K., de Goede-Bolder A., Landgraf J. M., Raat H., Moll H. A., Parental reports of health-related quality of life in young children with neurofibromatosis type 1: influence of condition specific determinants. Journal of Pediatrics 2007 151 2 182 186 2-s2.0-34447542448 10.1016/j.jpeds. 2007.03.005 (Pubitemid 47069402)
26. Page P. Z., Page G. P., Ecosse E., Korf B. M., Leplege A., Wolkenstein P., Impact of neurofibromatosis 1 on quality of life: a cross-sectional study of 176 American cases. American Journal of Medical Genetics A 2006 140 18 1893 1898 2-s2.0-33748598470 10.1002/ajmg.a.31422 (Pubitemid 44380075)
27. Spuijbroek A. T., Oostenbrink R., Landgraf J. M., Rietveld E., De Goede-Bolder A., Van Beeck E. F., Van Baar M., Raat H., Moll H. A., Health-related quality of life in preschool children in five health conditions. Quality of Life Research 2011 20 5 779 786 2-s2.0-79960262977 10.1007/s11136-010-9806-2
28. Wolkenstein P., Rodriguez D., Ferkal S., Gravier H., Buret V., Algans N., Simeoni M. C., Bastuji-Garin S., Impact of neurofibromatosis 1 upon quality of life in childhood: a cross-sectional study of 79 cases. British Journal of Dermatology 2009 160 4 844 848 2-s2.0-62649118235 10.1111/j.1365-2133.2008. 08949.x
29. Reiter-Purtill J., Schorry E. K., Lovell A. M., Vannatta K., Gerhardt C. A., Noll R. B., Parental distress, family functioning, and social support in families with and without a child with neurofibromatosis 1. Journal of Pediatric Psychology 2008 33 4 422 434 2-s2.0-41849150000 10.1093/jpepsy/jsm077 (Pubitemid 351499455)
30. Riccardi V. M., Friedman J. M., Gutmann D. H., Maccollin M., Ricccardi V. M., Historical background and introduction. Neurofibromatosis: Phenotype, Natural History, and Pathogenesis 1999 Baltimore, Md, USA The Johns Hopkins University Press 1 25
31. Ablon J., Gender response to neurofibromatosis. Social Science and Medicine 1996 42 1 99 109 2-s2.0-0030053662 10.1016/0277-9536(95)00076-3
32. Noll R. B., Reiter-Purtill J., Moore B. D., Schorry E. K., Lovell A. M., Vannatta K., Gerhardt C. A., Social, emotional, and behavioral functioning of children with NF1. American Journal of Medical Genetics A 2007 143 19 2261 2273 2-s2.0-34848894585 10.1002/ajmg.a.31923 (Pubitemid 47509642)
33. Kaufman A. S., Kaufman N. L., Manual for the Brief Intelligence Test 1990 Circle Pines, Minn, USA American Guidance Service
34. Reynolds C. R., Kamphaus R. W., The Behavior Assessment System for Children Second Edition (BASC-2) 2004 Circle Pines, Minn, USA American Guidance Service
35. Finley G. A., McGrath P. J., Measurement of Pain in Infants and Children 1998 Seattle, Wash, USA IASP Press
36. Varni J. W., Seid M., Kurtin P. S., PedsQL(TM) 4.0: reliability and validity of the pediatric quality of life inventory (TM) Version 4.0 generic core scales in healthy and patient populations. Medical Care 2001 39 8 800 812 2-s2.0-0035432179 10.1097/00005650-200108000-00006 (Pubitemid 33686263)
37. Walker L. S., Greene J. W., The functional disability inventory: measuring a neglected dimension of child health status. Journal of Pediatric Psychology 1991 16 1 39 58 2-s2.0-0025980459
38. Huijbregts S. C. J., De Sonneville L. M. J., Does cognitive impairment explain behavioral and social problems of children with neurofibromatosis type 1? Behavior Genetics 2011 41 3 430 436 2-s2.0-79958195841 10.1007/s10519-010- 9430-5
39. Martin S., Wolters P., Baldwin A., Gillespie A., Dombi E., Walker K., Widemann B., Social-emotional functioning of children and adolescents with neurofibromatosis type 1 and plexiform neurofibromas: relationships with cognitive, disease, and environmental variables. Journal of Pediatric Psychology 2012 37 7 713 724 2-s2.0-84864536443 10.1093/jpepsy/jsr124
40. Sato A. F., Davies W. H., Berlin K. S., Hainsworth K., Weisman S. J., Measuring global impairment in pediatric chronic pain: examining the overlap between functional disability and health-related quality of life. Proceedings of the Midwest Conference on Pediatric Psychology 2009 Kansas City, Mo, USA
41. Hyman S. L., Shores E. A., North K. N., Learning disabilities in children with neurofibromatosis type 1: subtypes, cognitive profile, and attention-deficit-hyperactivity disorder. Developmental Medicine and Child Neurology 2006 48 12 973 977 2-s2.0-33751109941 10.1017/S0012162206002131 (Pubitemid 44768799)