The Indian Journal of Pediatrics

, Volume 72, Issue 7, pp 567–571 | Cite as

Quality of life in children with sickle cell hemoglobinopathy

  • Archana B. PatelEmail author
  • Habib G. Pathan
Original Article


Objective: To identify specific domains and traits that are most affected in patients with sickle cell anemia and traits with respect to normal children.Methods: Children attending the regional hemoglobinopathy center at IGMC, Nagpur in age group of 8–14 years were assessed. Of 52 children studied, 25 had sickle cell anemia (SCA), 12 had sickle cell trait (SCT) and 15 wre normal control. The (quality of life (QOL) was assessed using multidimensional interview based questionnaire.Results: All domains, physical, psychosocial, cognitive and morbidity were affected. In SCA playing and mobility were most affected. There was feeling of sadness or disinterest and lack of support from teachers. The school attendance, vocational achievement perception, entertainment and participation in cultural activities were also affected. The intensity of weakness and pain was greater in SCA children who left that they were affected by a major illness. The unusual finding was that the SCT children also showed affection of all domains as compared to normal children, which was perhaps due to the stigma of the disease.Conclusion: QOL is affected in children with sickle cell disease (SCD) and to a lesser extent in SCT. Interventions to improve QOL should target the affected items. Improving awareness of the disease and its manifestation will help to alleviate the psychosocial affliction of children with SCT

Key words

Quality of life Sickle cell anemia Scale 


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  1. 1.
    World Health Organization, World Health Organization Constitution. Basic documents, Geneva 1948.Google Scholar
  2. 2.
    Patrick D, Erickson P.Quality of life in health care evaluation and research allocation. New York Oxford Univ. Health Status and Health Policy Press 1992.Google Scholar
  3. 3.
    The EuroQol Group. EuroQola new facility for the measurement of healthrelated quality of life.Health Policy 1990; 16: 199–208.CrossRefGoogle Scholar
  4. 4.
    WHO QOL-BREF Introduction, administration, scoring and generic version of assessment; Field Trail, December 1996; Version 5.2.Google Scholar
  5. 5.
    Kumar S, Powars D, Allen J, Haywood LJ. Anxiety, selfconcept, personal and social adjustment in children with sickle cell anemia.J Pediatr 1976; 88: 859–63.PubMedCrossRefGoogle Scholar
  6. 6.
    Feinstein AR. Clinico metrics. New Haven. Connecticut. Yale University Press 1987.Google Scholar
  7. 7.
    Kulozik AE, Kar BC, Satapathy RKet al. Fetal hemoglobin levels and b’-globin haplotypes in Indian population with sickle cell disease.Blood 1987; 69:1724–26.Google Scholar
  8. 8.
    Fowler MG, Whitt JKet al. Neuropsychologic and academic functioning of children with sickle cell anaemia.J Dev Behave Pediatr 1988; 9:213–220.Google Scholar
  9. 9.
    Palermo TM, Schwartz Let al. Parental report of health related quality of life in children with sickle cell disease.J Behav Med 2002; 25:269–283.PubMedCrossRefGoogle Scholar
  10. 10.
    Kater AP, Heijboer Het al. Quality of life in children with sickle cell disease in Amsterdam area.Ned Tijdschr Geneesked 1999; 143:2049–2053.Google Scholar
  11. 11.
    Fuggle P, Shand PAet al. Pain, quality of life, and coping in sickle cell disease.Arch Dis Child 1996; 75:199–203.PubMedCrossRefGoogle Scholar
  12. 12.
    Midence K, Shand P. Family and social issues in sickle cell disease.Health Visit 1992; 65:441–443.PubMedGoogle Scholar
  13. 13.
    Testa MA, Lenderking WR. Interpreting Pharmocoeconomic and quality of life clinical trial data for use in therapeutics.Pharmocoeconomics 1992; 2:107–117.Google Scholar

Copyright information

© Dr. K C Chaudhuri Foundation 2005

Authors and Affiliations

  1. 1.Indira Gandhi Medical CollegeNagpur

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