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DOI: 10.1590/0004-282X20170103
Translation and validation of the Life Satisfaction Index for Adolescents scale with neuromuscular disorders: LSI-A Brazil
Tradução e validação da escala de qualidade de vida para adolescentes com doenças neuromusculares para português do Brasil: LSI-A Brasil
ABSTRACT
Objective
To validate the Life Satisfaction Index for Adolescents (LSI-A) scale, parent version and patient version, for Duchenne muscular dystrophy (DMD), spinal muscular atrophy (SMA) and limb-girdle muscular dystrophy (LGMD).
Methods
The parent version of the instrument was divided into Groups A, B, C and D; and the patient version, divided into B, C and D. For the statistical calculation, the following tests were used: Cronbach’s α, ICC, Pearson and the ROC Curve.
Results
The parent and patient versions of the instrument are presented, with the following results in the overall score, respectively: Cronbach’s α, 0.87 and 0.89; reliability, r 0.98 and 0.97; reproducibility, ICC 0.69 and 0.80; sensitivity, 0.78 and 0.72; specificity, 0.5 and 0.69; and accuracy, 64% and 70.4%.
Conclusion
According to the validity and reproducibility values, the LSI-A Brazil parent and patient versions, are clinically useful to assess quality of life in DMD, SMA or LGMD and may also be useful for other neuromuscular disorders.
RESUMO
Objetivo
Validar a escala Life Satisfaction Index for Adolescents (LSI-A) versão pais e versão paciente para doenças neuromusculares.
Método
O instrumento versão pais foi dividido nos Grupos A,B, C e D; e paciente, em B, C e D. Para cálculo estatístico utilizou-se os testes α de Cronbach, CIC, Pearson e Curva ROC.
Resultados
Valor de Cronbach versão pais e paciente no escore geral, 0.87 e 0.89; confiabilidade,0.98 e 0.97;reprodutibilidade,entre 0.59 e 0.69 e, entre 0.58 e 0.80; sensibilidade, 0.78 e 0.72; especificidade, 0.5 e 0.69; e acurácia, 64% e 70.4% respectivamente.
Conclusão
Conforme a validade e reprodutibilidade, o LSI-A Brasil versão pais e paciente é útil clinicamente para avaliar a Qualidade de Vida da Distrofia Muscular de Duchenne, Amiotrofia Espinhal Progressiva ou Distrofia Muscular tipo Cinturas e pode ser usado para outras doenças neuromusculares.
Support:
Higher Education Personnel Improvement Coordination (Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES). It was carried out in the Department of Neurology, School of Medicine, University of São Paulo and in the João Pinheiro School.
Publication History
Received: 06 December 2016
Accepted: 11 May 2017
Article published online:
05 September 2023
© 2023. Academia Brasileira de Neurologia. This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commecial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)
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References
- 1 Reed UC. [Neuromuscular disorders]. J Pediatr (Rio J). 2002;78(1 Suppl 1):89-103. https://doi.org/10.1590/S0021-7557200200070001
- 2 Bullinger M, Anderson R, Cella D, Aaronson N. Developing and evaluating cross-cultural instruments from minimum requirements to optimal models. Qual Life Res. 1993;2(6):451-9. https://doi.org/10.1007/BF00422219
- 3 Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Dis Child. 2001;84(3):205-11. https://doi.org/10.1136/adc.84.3.205
- 4 Gill T, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. JAMA. 1994;272(8):619-25. https://doi.org/10.1001/jama.1994.03520080061045
- 5 Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med. 1993;118(8):622-9. https://doi.org/10.7326/0003-4819-118-8-199304150-00009
- 6 Simon VA, Resende MBD, Simon MA, Zanoteli E, Reed UC. Duchenne muscular dystrophy: quality of life among 95 patients evaluated using the Life Satisfaction Index for Adolescents. Arq Neuropsiquiatr. 2011;69(1):19-22. https://doi.org/10.1590/S0004-282X2011000100005
- 7 Reid DT, Renwick RM. Preliminary validation of a new instrument to measure life satisfaction in adolescents with neuromuscular disorders. Int J Rehabil Res. 1994;17(2):184-8. https://doi.org/10.1097/00004356-199406000-00009
- 8 Parrish RK 2nd. Visual impairment, visual functioning, and quality of life assessments in patients with glaucoma. Trans Am Ophthalmol Soc. 1996;94:919-1028.
- 9 Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol. 1993;46(12):1417-32. https://doi.org/10.1016/0895-4356(93)90142-N
- 10 Clark P, Lavielle P, Martínez H. Learning from pain scales: patient perspective. J Rheumatol. 2003;30(7):1584-8.
- 11 Pearson K, Fisher R, Inman HF. Karl Pearson and R. A. Fisher on statistical tests: a 1935 exchange from nature. Am Stat. 1994;48(1):2-11. https://doi.org/10.2307/2685077
- 12 Shrout PE, Fleiss JL. Intraclass correlations: uses in assessing rater reliability. Psychol Bull 1979;86(2):420-8. https://doi.org/10.1037/0033-2909.86.2.420
- 13 Fayers PM, Machin D. Quality of life: assessment, analysis and interpretation. New York: Wiley; 2000.
- 14 Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika. 1951;16(3):297-334. https://doi.org/10.1007/BF02310555
- 15 Melo ELA, Valdés MTM, Pinto JMS. Qualidade de vida em crianças e adolescentes com distrofia muscular de Duchenne. Pediatria (São Paulo). 2005;27(1):28-37.
- 16 Solans M, Pane S, Estrada MD, Serra-Sutton V, Berra S, Herdman M et al. health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health. 2008;11(4):742-64. https://doi.org/10.1111/j.1524-4733.2007.00293.x
- 17 McDougall J, Servais M, Sommerfreund J, Rosen E, Gillett J, Gray J et al. An evaluation of the paediatric acquired brain injury community outreach programme (PABICOP). Brain Inj. 2006;20(11):1189-205. https://doi.org/10.1080/02699050600975541
- 18 Barbosa TS, Tureli MC, Gavião MB. Validity and reability of the Child Perceptions Questionnaires applied in Brazilian children. BMC Oral Health. 2009;9(1):13. https://doi.org/10.1186/1472-6831-9-13
- 19 Bandeira M, Calzavara MGP, Costa CS, Cesari L. Avaliação de serviços de saúde mental: adaptação transcultural de uma medida da percepção dos usuários sobre os resultados do tratamento. J Bras Psiquiatr. 2009;58(2):107-14. https://doi.org/10.1590/S0047-20852009000200007
- 20 Boström K, Ahlström G. Quality of life in patients with muscular dystrophy and their next of kin. Int J Rehabil Res. 2005;28(2):103-9. https://doi.org/10.1097/00004356-200506000-00002
- 21 Boyer F, Drame M, Morrone I, Novella JL. Factors relating to carer burden for families of persons with muscular dystrophy. J Rehabil Med. 2006;38(5):309-15. https://doi.org/10.1080/16501970600731578
- 22 Zhou XH, Obuchowski NA, McClish DK. Statistical methods in diagnostic medicine. New York: Wiley-Interscience; 2002.
- 23 Silva AC, Carvalho PCP, Gattass M. Diagnosis of solitary lung nodule using texture and geometry in computerized tomography images: preliminary results. IEEE Latin America Transactions. 2004;2(2):75-80. https://doi.org/10.1109/TLA.2004.1468623
- 24 Sabbatini RME. Um programa para o cálculo da acurácia, especificidade e sensibilidade de testes médicos. Revista Informédica. 1995;2(12):19-21.
- 25 Heneghan C, Badenoch D. Ferramentas para medicina baseada em evidências. 2a ed. Porto Alegre: Artmed; 2007.
- 26 Yamaguchi N, Poudel KC, Poudel-Tandukar K, Shakya D, Ravens-Sieberer U, Jimba M. Reliability and validity of a Nepalese version of the Kidd-KINDL in adolescents. Biosci Trends. 2010;4(4)4:178-85.