Quality of life in patients with sickle cell disease

• Published in: Revista paulista de pediatria : orgao oficial da Sociedade de Pediatria de Sao Paulo Vol. 31; no. 1; p. 24
• Main Authors: Menezes, Adeline Soraya de O da P, Len, Cláudio Arnaldo, Hilário, Maria Odete E, Terreri, Maria Teresa R A, Braga, Josefina Aparecida P
• Format: Journal Article
• Language: English
• Published: Brazil 01.01.2013
• Subjects: Adolescent; Anemia, Sickle Cell - diagnosis; Child; Child, Preschool; Cross-Sectional Studies; Female; Humans; Male; Parents; Quality of Life; Surveys and Questionnaires
• ISSN: 1984-0462

To evaluate the quality of life in children and adolescents with sickle cell disease attending a blood reference center, and to assess the quality of life of their relatives. Cross-sectional study that included 100 patients with sickle cell disease, which were divided into three subgroups according to age: 5 to 7 (n=18), 8 to 12 (n=32), and 13 to 18 years-old (n=50), and their parents. The Control Group included 50 healthy children and adolescents from a public local school, also divided into the same three age subgroups and their caregivers. The Pediatric Quality of life Inventory (PedsQL), version 4.0, was applied in both groups. The generic questionnaire Medical Outcomes Study 36 - Item Short-Form Health Survey (SF-36) was applied to the relatives. The answers were linearly transformed into a score and compared by non-parametric tests. The PedsQL scores of patients were significantly lower than those obtained in the Control Group (p<0.0001) in all studied areas (physical, emotional, social skills, and school activities). Similarly, SF-36 scores applied to the patients' parents were lower than those obtained in the Control Group in all studied aspects (p<0.0001). Sickle cell disease affects the quality of life of children, adolescents, and their families. Patients sense restrictions in the emotional, social, family and physical aspects, among others.