Quality of life in pre-adolescent children with sickle cell disease in Brazil.
Claudia Di Lorenzo OliveiraShannon KellyCesar de Almeida NetoAnna Bárbara Carneiro-ProiettiFabiana Chagas Camargos PiassiTassila SalomonMiriam V Flor-ParkCláudia MáximoDaniela de Oliveira Werneck RodriguesRosimere Afonso MotaCarolina Miranda TeixeiraPaula LoureiroEster Cerdeira SabinoBrian S Custernull nullPublished in: Pediatric hematology and oncology (2019)
Sickle cell disease (SCD) affects more than 13 million people and can have a significant impact on the quality of life (QoL) of those persons. We performed a cross-sectional study to evaluate the QoL in SCD children 8-12 years old enrolled from November 2014 to March 2016 in a large multicenter cohort study in Brazil. The PedsQL™ SCD Module was used to evaluate QoL in 412 children from six Brazilian health centers. The mean age of participants was 10.5 years and 193(46.7%) were women. The mean global score was 60.7, with a Cronbach´s alpha of 0.92. There were significant differences in socioeconomic demographics and treatments among participants at the six centers, but age, income, SCD genotype, and use of hydroxyurea did not significantly affect the QoL scores. After adjustment for all of these variables in a linear regression model, a significant difference was observed by site in global QoL score and the dimensions 'worry II'(β0 = 20.7, p < .00), 'treatment´(β0 = 66.8, p < .00) and communication II'(β0 = 45.8, p < .00). These dimensions are affected by the capacity of health professionals to provide clinical and psychological support to patients. Our results suggest that QoL of this patient population varied according the health center even adjusted by sociodemographics characteristics. Additional training of health professionals in psychological and clinical support could directly reduce patient apprehension about the disease its clinical complications.
Keyphrases
- sickle cell disease
- young adults
- mental health
- public health
- healthcare
- case report
- physical activity
- ejection fraction
- end stage renal disease
- newly diagnosed
- metabolic syndrome
- type diabetes
- health information
- polycystic ovary syndrome
- skeletal muscle
- health promotion
- adipose tissue
- combination therapy
- cross sectional
- replacement therapy