medigraphic.com
ISSN 1817-5996 (Electronic)

2015, Number 2

<< Back Next >>

Rev Cub de Reu 2015; 17 (2)

Questionnaires of quality of life in boys and teenage with systemic lupus erythematosus

González BM, Hernández GM, Rodríguez VHE

Language: Spanish
References: 25
Page: 172-177
PDF size: 370.58 Kb.


ABSTRACT

Now a days, the 15 % of the cases with systemic lupus erythematosus debut in the adolescence. There are many investigations in the international environment that approach different evaluation instruments of the illness. Pediatric Rheumatology has reached a great development in our country, but the reaches from a psychological and social perspective are still insufficient. That’s why this revision goes to describe the main questionnaires that evaluate the systemic erythematous lupus in the pediatric age.
As a conclusion it is considered that it´s necessary to investigate about the quality of life in pediatric patients with systemic lupus erythematosus. Among the analyzed instruments the Questionnaire of Quality of Life related with Health stands out, which has been broadly used by several authors in the pediatric patient's evaluation with lupus. So, this instrument will be useful in future reaches in the psychological area to improve the integral attention of the Cuban children and adolescents with systemic lupus erythematosus.


REFERENCES

  1. Suarez MA. Factores genéticos asociados con predisposición a Lupus eritematoso sistémico [Tesis]. España: Universidad de Santiago de Compostela; 2010.

  2. Rodríguez HE. Caracterización de la depresión en adolescentes con Lupus Eritematoso Sistémico [Tesis]. Santa Clara: Universidad Central "Martha Abreu" de Las Villas; 2011.

  3. Coto Hermosilla C. Lupus eritematoso sistémico juvenil. En: Reumatología pediátrica. La Habana: Ed. Ciencias Médicas; 2012. p. 191-224.

  4. Campos M, Sotolongo Y, López AM. Psiquiatría de enlace en pacientes con afecciones reumatológicas. Rev Cubana Reumatol [Internet]. 2010 [citado 10 septiembre 2014];XII(16). Disponible en: http://www.revreumatologia.sld.cu/index.php/reumatologia/article/view/52/70

  5. Hernández V, Coto C, Méndez M, Cantera D. Doctora Gloria Varela. Madre de la Reumatología Pediátrica en Cuba. Rev Cubana Reumatol [Internet]. 2012 [citado 10 septiembre 2014];XIV(20). Disponible en: http://www.revreumatologia.sld.cu/index.php/reumatologia/article/view/26/378

  6. Coto C, Varela G, Estrada G. Validación de la versión cubana, en español, del cuestionario de evaluación de salud (Childhood Health Assessment Questionnaire) en niños cubanos con Artritis Reumatoide Juvenil. Rev Cubana Reumatol [Internet]. 1999 [citado 10 septiembre 2014];I(1). Disponible en: www.revreumatologia.sld.cu/index.php/reumatologia/article/view/184/204

  7. Estévez del Toro M, Chico Capote A, Jiménez Paneque R, Marin Gil JM, Castell Pérez C, Kokuina E. Supervivencia en pacientes cubanos con lupus eritematoso sistémico, influencia de las características iniciales de la enfermedad. Rev cubana med [Internet]. 2008 [citado 10 septiembre 2014];47(3). Disponible en: http://scielo.sld.cu/scielo.php?pid=S003475232008000300003&script=sciarttext

  8. González JE. Estudio de las necesidades de salud: su papel mediatizador en la adherencia al tratamiento en adolescentes con Lupus Eritematoso Sistémico [Tesis]. Santa Clara: Universidad Central de Las Villas Martha Abreu.

  9. Touma Z, Gladman DD, Ibanez D, Urowitz MB. Development and iInitial validation of the systemic Lupus erythematosus Disease Activity Index 2000 Responder Index 50. The Journal of Rheumatology [Internet]. 2011 [citado 23 febrero 2014];38(2):[aprox. 9 p.]. Disponible en: http://jrheum.org/content/38/2/275.full.pdf+html

  10. Colangelo KJ, Pope JE, Peschken C. The Minimally Important Difference for Patient Reported Outcomes in Systemic Lupus Erythematosus Including the HAQ-DI, Pain, Fatigue, and SF-36. The Journal of Rheumatology [Internet]. 2009 [citado 23 febrero 2014];36(10):[aprox. 6 p.]. Disponible en: http://jrheum.org/content/36/10/2231.full.pdf+html

  11. Bourré-Tessier J, Clarke AE, Mikolaitis-Preuss R, Kosinski M. Cross-cultural Validation of a Disease-specific Patient-reported Outcome Measure for Systemic Lupus Erythematosus in Canada. The Journal of Rheumatology [Internet]. 2013 [citado 23 febrero 2014];40(8):[aprox. 6 p.]. Disponible en: http://jrheum.org/content/40/8/1327.full.pdf+html

  12. Hanly JG, Urowitz MB, Jackson D. SF-36 summary and subscale scores are reliable outcomes of neuropsychiatric events in systemic lupus erythematosus. Annals of the Rheumatic Diseases [Internet]. 2011 [citado 23 febrero 2014];70(6):[aprox. 6 p.]. Disponible en: http://ard.bmj.com/content/70/6/961.full.pdf+html

  13. Jolly M. How does quality of life of patients with systemic lupus erythematosus compare with that of other common chronic illnesses? The Journal of Rheumatology [Internet]. 2005 [citado 10 septiembre 2014];32(9):[aprox. 2 p.]. Disponible en: http://jrheum.org/content/32/9/1706.full.pdf+html

  14. Estévez del Toro. Indicadores pronósticos para la atención integral a paciente con Lupus Eritematoso Sistémico [Tesis]. Ciudad de La Habana: Hospital Clínico Quirúrgico “Hermanos Ameijeiras¨; 2010. Disponible en: http://tesis.repo.sld.cu/257/1/Est%C3%A9vez_del_Toro.pdf

  15. Ariza K, Isaza P, Gaviria AM. Calidad de vida relacionada con salud, factores psicológicos y fisiopatológicos en pacientes con diagnóstico de Lupus Eritematoso Sistémico. Terapia Psicológica [Internet]. 2010 [citado 10 septiembre 2014];28(1): [aprox. 9 p.]. Disponible en: http://www.scielo.cl/scielo.php?script=sci_arttext&pid=S0718-48082010000100003&lng=es&nrm=iso&tlng=es

  16. Wolfe F, Michaud K, Li T, Katz, R. EQ-5D and SF-36 Quality of Life Measures in Systemic Lupus Erythematosus: Comparisons with Rheumatoid Arthritis, Noninflammatory Rheumatic Disorders, and Fibromyalgia. The Journal of Rheumatology [Internet]. 2010 [citado 23 febrero 2014];37(2):[aprox. 5 p.]. Disponible en: http://jrheum.org/content/37/2/296.full.pdf+html

  17. Lai JS, Beaumont JL, Ogale S, Brunetta P, Cella D. Validation of the Functional Assessment of Chronic Illness Therapy-Fatigue Scale in Patients with Moderately to Severely Active Systemic Lupus Erythematosus, Participating in a Clinical Trial. The Journal of Rheumatology [Internet]. 2011 [citado 10 septiembre 2014];38(4):[aprox. 7 p.]. Disponible en: http://jrheum.org/content/38/4/672.full.pdf+html

  18. Bergman MJ, Shahouri SS, Shaver TS. Is Fatigue an Inflammatory Variable in Rheumatoid Arthritis (RA)? Analyses of Fatigue in RA, Osteoarthritis, and Fibromyalgia. The Journal of Rheumatology [Internet]. 2009 [citado 10 septiembre 2014];36(12):[aprox. 6 p.]. Disponible en: http://jrheum.org/content/36/12/2788.full.pdf+html

  19. Moldovan I, Katsaros E, Carr FN. The Patient Reported Outcomes in Lupus (PATROL) study: role of depression in health-related quality of life in a Southern California lupus cohort. Lupus [Internet]. 2011 [citado 10 septiembre 2014];20(12):[aprox. 7 p.]. Disponible en: http://www.ncbi.nlm.nih.gov/pubmed/21813589

  20. Adams CD, Streisand RM, Zawacki T, Joseph KE. Living With a Chronic Illness: A Measure of Social Functioning for Children and Adolescents. Journal of Pediatric Psychology [Internet]. 2002 [citado 23 febrero 2014];27(7):[aprox. 12 p.]. Disponible en: http://jpepsy.oxfordjournals.org/content/27/7/593.full.pdf

  21. Palermo TM, Long AC, Lewandowski AS. Evidence-base Assessment of Health-related Quality of Life and Functional Impairment in Pediatric Psychology. Journal of Pediatric Psychology [Internet]. 2008 [citado 23 febrero 2014];33(9):[aprox. 13 p.]. Disponible en: http://www.ncbi.nlm.nih.gov/pubmed/184307622

  22. Brunner HI, Higgins GC, Lapidus SK. Health-related Quality of Life and Its Relationship to Patient Disease Course in Childhood-onset Systemic Lupus Erythematosus. The Journal of Rheumatology [Internet]. 2009 [citado 23 febrero 2014];36(7):[aprox. 9 p.]. Disponible en: http://jrheum.org/content/36/7/1536.full.pdf+html

  23. Moorthy LN, Peterson MG, Harrison MJ, Onel KB, Lehman TJ. Quality of life in children with systemic lupus erythematosus: a review. Published. 2007;16(8):663-9.

  24. Varni JW, Limbers CA. The pediatric quality of life inventory: measuring pediatric health-related quality of life from the perspective of children and their parents. Pediatr. Clin. N. Am [Internet]. 2009 [citado 10 septiembre 2014];56(4):[aprox. 20 p.]. Disponible en: http://www.ncbi.nlm.nih.gov/pubmed/19660631

  25. Rygg M, Pistorio A, Ravelli A, Maghnie M, Di Iorgi N, Bader-Meunier B, Ruperto N. A longitudinal PRINTO study on growth and puberty in juvenile systemic lupus erythematosus. Annals of the rheumatic diseases. 2012;71(4):511-7.




2020     |     www.medigraphic.com