Quality of life in children with systemic lupus erythematosus: A review

Lupus

Volumn 16, Issue 8, 2007, Pages 663-669

  Moorthy, L Nandini ^a   Peterson, M G E ^b   Harrison, M J ^b   Onel, K B ^a,c   Lehman, T J A ^a,d  

^a ROBERT WOOD JOHNSON MEDICAL SCHOOL   (United States)

^b HOSPITAL FOR SPECIAL SURGERY   (United States)

^c UNIVERSITY OF CHICAGO   (United States)

^d WEILL CORNELL MEDICAL COLLEGE   (United States)

Author keywords

Pediatric; Quality of life; Systemic lupus erythematosus

Indexed keywords

CHILD HEALTH CARE; DISEASE ACTIVITY; HEALTH STATUS; HUMAN; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; REVIEW; SHORT FORM 36; SOCIAL PSYCHOLOGY; SYSTEMIC LUPUS ERYTHEMATOSUS;

CHILD; HEALTH STATUS; HUMANS; LUPUS ERYTHEMATOSUS, SYSTEMIC; QUALITY OF LIFE; QUESTIONNAIRES;

EID: 34548451227     PISSN: 09612033     EISSN: None     Source Type: Journal    
DOI: 10.1177/0961203307077539     Document Type: Review

References (62)

1. World Health Organization (WHO) Health Promotion Glossary. http://www.who.int/hpr/backgroundhp/glossary/glossary.pdf. World Health Organization, 1998.
2. Bowling A. Health-related quality of life: conceptual meaning, use and measurement. In Measuring disease: A review of disease-specific quality of life measurement scales (2nd edition). Open University Press, 2001:1-22.
3. Feldman B, Grundland B, McCullough L, Wright V. Distinction of quality of life, health related quality of life, and health status in children referred for rheumatologic care. [see comments.]. J Rheumatol 2000; 21: 226-233.
4. Simeonsson RJ, Lollar D, Hollowell J, Adams, M. Revision of the international classification of impairments, disabilities, and handicaps developmental issues. J Clin Epidemiol 2000; 53: 113-124.
5. Ruperto N, Ravelli A, Murray KJ et al. Preliminary core sets of measures for disease activity and damage assessment in juvenile systemic lupus erythematosus and juvenile dermatomyositis. Rheumatology (Oxford) 2003; 42: 1452-1459.
6. Ruperto N, Ravelli A, Cuttica R et al. The Pediatric Rheumatology International Trials Organization criteria for the evaluation of response to therapy in juvenile systemic lupus erythematosus: prospective validation of the disease activity core set. Arthritis Rheum 2005; 52: 2854-2864.
7. Janse AJ, Sinnema G, Uiterwaal CS, Kimpen JL, Gemke RJ. Quality of life in chronic illness: perceptions of parents and paediatricians. Arch Dis Child 2005; 90: 486-491.
8. Janse AJ, Uiterwaal CS, Gemke RJ, Kimpen JL, Sinnema G. A difference in perception of quality of life in chronically ill children was found between parents and pediatricians. J Clin Epidemiol 2005; 58: 495-502.
9. Moorthy LN, Peterson MGE, Onel KB, Harrison MJ, Lehman TJA. Quality of life in children with systemic lupus erythematosus. Curr Rheumatol Rep 2005; 7: 447-452.
10. Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Department of Psychology, University of Sheffield, 2001.
11. Varni J, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999; 37: 126-139.
12. Vogels T, Verrips G, Verloove-Vanhorick S et al. Measuring healthrelated quality of life in children: the development of the TACQOL parent form. Qual Life Res 1998; 7: 457-465.
13. Press J, Neumann L, Uziel Y, Bolotin A, Buskila D. Assessment of quality of life of parents of children with juvenile chronic arthritis. Clin Rheumatol 2002; 21: 280-283.
14. Russell KM, Hudson M, Long A, Phipps S. Assessment of health-related quality of life in children with cancer: consistency and agreement between parent and child reports. Cancer 2006; 106: 2267-2274.
15. Shaw KL, Southwood TR, McDonagh JE. Growing up and moving on in rheumatology: parents as proxies of adolescents with juvenile idiopathic arthritis. Arthritis Rheum 2006; 55: 189-198.
16. Loonen H, Derkx B, Koopman H, Heymans H. Are parents able to rate the symptoms and quality of life of their offsprings with IBD? Inflamm Bowel Dis 2002; 8: 270-276.
17. Eiser C, Morse R. Can parents rate their child's health-related Quality of life? Results of a systematic review. Qual Life Res 2001; 10: 347-357.
18. Brunner HI, Klein-Gitelman MS, Miller MJ et al. Health of children with chronic arthritis: relationship of different measures and the quality of parent proxy reporting. Arthritis Rheum 2004; 51: 763-773.
19. Sawyer M, Antoniou G, Toogood I, Rice M. A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer. Int J Cancer 1999; 12: 39-45ss.
20. Sung L, Young NL, Greenberg ML et al. Health-related quality of life (HRQL) scores reported from parents and their children with chronic illness differed depending on utility elicitation method. J Clin Epidemiol 2004; 57: 1161-1166.
21. Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and quality of life. Med Care 1989; 27: S127-S232.
22. Fitzpatrick R, Davey C, Buxton MJ, Jones DR. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess 1998; 2.
23. Gladman D, Urowitz M, Ong A, Gough J, MacKinnon A. Lack of correlation among the 3 outcomes describing SLE: disease activity, damage and quality of life. Clin Exp Rheumatol 1996; 14: 305-308.
24. Ruperto N, Buratti S, Duarte-Salazar C et al. Health-related quality of life in juvenile-onset systemic lupus erythematosus and its relationship to disease activity and damage. Arthritis Rheum 2004; 51: 458-464.
25. Khanna S, Pal H, Pandey RM, Handa R. The relationship between disease activity and quality of life in systemic lupus erythematosus. Rheumatology (Oxford) 2004; 43: 1536-1540.
26. Moorthy LN, Harrison MJ, Peterson MGE, Onel KB, Lehman TJA. Relationship of quality of life and physical function measures with disease activity in children with systemic lupus erythematosus. Lupus 2005; 14: 280-287.
27. Jolly M, Utset TO. Can disease specific measures for systemic lupus erythematosus predict patients health related quality of life? Lupus 2004; 13: 924-926.
28. Barron AC, Lee TL, Taylor J et al. Feasibility and construct validity of the parent willingness-to-pay technique for children with juvenile idiopathic arthritis. Arthritis Rheum 2004; 51: 899-908.
29. Brunner HI, Maker D, Grundland B et al. Preference-based measurement of health-related quality of life (HRQL) in children with chronic musculoskeletal disorders (MSKDs). Med Decis Making 2003; 23: 314-322.
30. Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS. The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. Arthritis Rheum 2002; 46: 714-725.
31. Varni JW, Burwinkle TM, Szer J. The PedsQL Multidimensional Fatigue Scale in pediatric rheumatology: reliability and validity. J Rheumato 2004; 31(12): 2494-2500.
32. Rand Corporation and John E Ware. General Health Status and Quality of life. In McDowell I, Newell C eds. Measuring health - a guide to rating scales and questionnaires (2nd edition). Oxford University Press, 1996: 446-456.
33. Vitale M, Levy D, Johnson M et al. Assessment of quality of life in adolescent patients with orthopaedic problems: are adult measures appropriate? J Pediatr Orthoped 2001; 21: 622-628.
34. Landgraf J, Abetz L, Ware J. The Childhood Health Questionnaire: A user manual. The Health Institute, 1996.
35. Selvaag A, Flato B, Lien G, Sorskaar D, Vinje O, Forre O. Measuring health status in early juvenile idiopathic arthritis: determinants and responsiveness of the child health questionnaire. J Rheumatol 2003; 30: 1602-1610.
36. Ruperto N, Ravelli A, Pistorio A et al. Paediatric Rheumatology International Trials Organisation. Cross-cultural adaptation and psychometric evaluation of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ) in 32 countries. Review of the general methodology. Clin Exp Rheumatol 2001; 19(4 Suppl 23): S1-9.
37. Singh G, Athreya B, Fries J, Goldsmith D. Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum 1994; 37: 1761-1769.
38. Singh G, Bown B, Athreya B. Functional status in juvenile rheumatoid arthritis: senstivity to change of the Childhood Health Assessment Questionnaire. Arthritis Rheum 1991; 34: S81.
39. Ruperto N, Ravelli A, Migliavacca D et al. Responsiveness of clinical measures in children with oligoarticular juvenile chronic arthritis. J Rheumatol 1999; 26: 1827-1830.
40. Dempster H, Porepa M, Young N, Feldman BM. The clinical meaning of functional outcome scores in children with juvenile arthritis. Arthritis Rheum 2001; 44: 1768-1774.
41. Huber AM, Hicks JE, Lachenbruch PA et al. Validation of the Childhood Health Assessment Questionnaire in the juvenile idiopathic myopathies. Juvenile Dermatomyositis Disease Activity Collaborative Study Group. J Rheumatol 2001; 28: 1106-1111.
42. Brooks R with the EuroQoL group. EuroQol: the current state of play. Health Policy 1996; 37: 53-72.
43. Duffy C, Arsenault L, Duffy K, Paquin J, Strawczynski H. The Juvenile Arthritis Quality of Life Questionnaire - development of a new responsive index for juvenile rheumatoid arthritis and juvenile spondyloarthritides. J Rheumatol 1997; 24: 738-746.
44. Tucker L, DeNardo B, Abetz L et al. The Childhood Arthritis Health Profile (CAHP): validity and reliability of the condition specific scales. Arthritis Rheum 1995; 38: S178
45. Duffy CM. Measurement of health status, functional status, and quality of life in children with juvenile idiopathic arthritis: clinical science for the pediatrician. Pediatr Clin North Am 2005; 52: 359-372, v.
46. Wright F, Law M, Crombie V, Goldsmith C, Dent P. Development of a self-report functional status index for juvenile rheumatoid arthritis. J Rheumatol 1994; 21: 536-544.
47. Howe S, Levinson J, Shear E et al. Development of a disability measurement tool for juvenile rheumatoid arthritis. The Juvenile Arthritis Functional Assessment Report for Children and their Parents. Arthritis Rheum 1991; 34: 873-880.
48. Lovell D, Howe S, Shear E et al. Development of a disability measurement tool for juvenile rheumatoid arthritis. The Juvenile Arthritis Functional Assessment Scale. Arthritis Rheum 1989; 32: 1390-1395.
49. Moorthy LN, Harrison MJ, Peterson MGE, Onel KB, Lehman TJA. Quality of life in children with systemic lupus erythematosus: The search for appropriate measurement tools. Pediatric Rheumatology Online Journal 2004; 2.
50. Moorthy LN, Harrison MJ, Peterson MGE, Onel KB, Lehman TJA. Are quality of life measures better estimators of disease activity than physical function measures in children with systemic lupus erythematosus (SLE)? Arthritis Rheum 2003; 48(Suppl): S507.
51. Moorthy LN, Peterson MGE, Harrison MJ et al. Relationship of school attendance with quality of life, physical function, disease activity and damage in pediatric systemic lupus erythematosus. Presented as aposter at the FOCIS meeting, Boston, MA; http://www.abstracts2view.com/focis/ Federation of Clinical Immunological Societies. FOCIS conference Manual, Abstract Presentation for FOCIS meeting, 12-16 May 2005.
52. Schanberg LE, Gil KM, Anthony KK, Yow E, Rochon J. Pain, stiffness, and fatigue in juvenile polyarticular arthritis: contemporaneous stressful events and mood as predictors. Arthritis Rheum 2005; 52: 1196-1204.
53. Da Costa D, Dritsa M, Bernatsky S et al. Dimensions of fatigue in systemic lupus erythematosus: relationship to disease status and behavioral and psychosocial factors. J Rheumatol 2006; 33: 1282-1288.
54. Grootscholten C, Ligtenberg G, Derksen RH et al. Health-related quality of life in patients with systemic lupus erythematosus: development and validation of a lupus specific symptom checklist. Qual Life Res 2003; 12: 635-644.
55. Leong KP, Kong KO, Thong BY et al. Development and preliminary validation of a systemic lupus erythematosus-specific quality-of-life instrument (SLEQOL). Rheumatology (Oxford) 2005; 44: 1267-1276.
56. Gladman DD. A novel, disease-specific quality-of-life instrument for patients with SLE. Nat Clin Pract Rheumatol 2006; 2: 132-133.
57. Moorthy LN, Peterson MGE, Harrison MJ et al. Simple measure of the impact of lupus erythematosus in youngsters© (SMILEY©) - preliminary data on development and validation. Ann Rheum Dis 2005; 64: 1638.
58. Moorthy LN, Peterson MGE, Onel KB et al. Simple measure of the impact of lupus erythematosus in youngsters©-(SMILEY©) - development and validation. Arthritis Rheum 2005; 52(9 Suppl): S538.
59. Moorthy LN, Peterson MGE, Onel KB et al. Multicenter validation of simple measure of impact of lupus erythematosus in youngsters© - a new quality of life measure in pediatric lupus. Ann Rheum Dis 2006; 65(Suppl II): 446.
60. Moorthy LN, Peterson MGE, Baratelli MJ et al. Simple measure of the impact of lupus erythematosus in youngsters© (SMILEY©) - validity, internal consistency and test-retest reliability. Arthritis Rheum 2006; 54: S162.
61. Moorthy LN, Peterson, MGE, Baratelli MJ et al. Multicenter validation of simple measure of impact of lupus erythematosus in youngsters© (SMILEY©) - a new quality of life measure in pediatric lupus (accepted for publication in Arthritis Care and Research).
62. Moorthy LN, Robbins L, Harrison MJ et al. Quality of life in paediatric lupus. Lupus 2004; 13: 234-240.