Self-Report for Assessment of Pain and Quality of Life in Children with Sickle Cell Anemia in a Developing Country

PURPOSE: The specific assessment of pain and quality of life in children with sickle cell anemia (SCA) is still the subject of few studies and is traditionally evaluated through perception of their parents or guardians. Thus, this study aimed to evaluate pain, its characteristics, and impact on the quality of life (QoL) in children diagnosed with SCA, valuing their self-report. PATIENTS AND METHODS: This study was conducted on hematology and hemotherapy outpatient clinic in São Luís, Brazil, with children between 7 years and 12 years with SCA, of both genders. The instruments used were Numeric Pain Rating Scale, Faces Pain Scale and Autoquestionnaire Qualité de Vie Enfante Imagé (AUQEI) for the assessment of pain and QoL from the children’s self-report. The association between pain intensity and QoL was verified through the Chi-square test and the relationship between pain and the domains of AUQEI was verified through Pearson’s correlation, using Stata 10.0(®). RESULTS: The sample consisted of 104 children with a mean age of 8.97 years, 51.9% were male and 94.2% non-white. Pain was characterized predominately moderate to strong, stabbing (37.5%) and burning (31.7%), with greater frequency in the limbs, and reported simultaneously in two or more locations. The average pain score was 9.26 at the worst time and in the general context was 6.02. As a result of pain, 93.3% reported school absence, averaging 8.57 days of absence; 63.5% had sleep disturbance and 86.5% failed to perform your daily activities. QoL results were negative in 48.08% and 56.25% of these had severe pain. About 74% of children with positive QoL had mild pain. CONCLUSION: Pain in children with SCA has a negative impact on their QoL based on their point of view, affecting their daily life. These findings highlight the importance of valuing children’s self-report of the disease, especially in a restricted resource scenario.