Gender influences on the health of adolescents with sickle cell disease.

The current study examines gender effects on disease knowledge and quality of life in adolescents with sickle cell disease (SCD) in Jamaica. We report the baseline results on 76 girls and 74 boys with mean age (16.9 ± 1.8 vs. 16.2 ±2.0 years), recruited in a larger intervention study. Girls had higher knowledge scores (15.3 ± 4.2 vs. 13.3 ± 4.2 p=.004), poorer overall QOL scores (70.1 ± 19.6 vs. 77.2 ± 17.8 p=0.02) but similar severity scores to boys. Girls also had significantly lower scores on many QOL domain scores: Pain occurrences over the course the past month (Pain and Hurt:77.49 ± 23.3 vs. 85.37 ± 17.13); concerns about seeking health services for pain (Worry1:63.73 ± 26.21 vs. 75.33 ± 24.62); confidence in self-management & treatment effects (Treatment: 72.25 ± 23.6 vs. 80.73 ± 18.90) and SCD disclosure & empathy from others (Communication II: 47.44 ± 1.02 vs. 61.71 ± 29.41). Knowledge was positively predicted by age, higher education, greater household possessions and was higher in girls; whereas QOL was lower in girls and those with greater disease severity and higher with higher education. In conclusion, there is a significant gender differential in disease knowledge and QOL among adolescents with SCD. Interventions will need to address the lower QOL in girls and lower disease knowledge among boys.

Short- term impact of educational interventions on disease knowledge, illness perception and quality of life among Jamaican adolescents with sickle cell disease

OBJECTIVES: To assess the effect of educational interventions on disease knowledge, illness perception (IP) and quality of life (QOL) of adolescents with sickle cell disease (SCD) in Kingston, Jamaica. METHODS: A randomized controlled intervention study was conducted among 150 adolescents (ages 13-19 years) attending for routine visits. Baseline disease knowledge, IP and QOL were assessed prior to randomization to 3 groups (Group A: routine care; B: educational booklet; C: booklet + formal counselling) and all measures were repeated 3 months later. Changes in outcomes were analysed using random effects analysis of variance models. RESULTS: There were 76 girls and 74 boys (Mean age 16.1ñ1.9 years; 77% had homozygous SS disease), of whom 63.3% were reviewed at three months. Baseline knowledge was higher: with age (p value: 0.007) and in girls (p value: 0.024). Teen QOL was lower in girls (p value: 0.038) and lower in severe disease (p value< 0.001). Post-intervention knowledge scores were significantly higher within all 3 groups (increase of 1.68 in group A, 2.03 in B and 2.88 in C), but there was nil effect of interventions. There were no changes in QOL or IPs either. Adolescents who had higher knowledge scores had better understanding that their illness was long lasting (Coef: 0.22; p value: 0.008), and they perceived better personal control (Coef: 0.30; p value<0.001), as well as the effect of treatment (Coef: 0.12; p value: 0.01), in managing their illness. CONCLUSIONS: Participation in the study was associated with improved knowledge scores, but interventions per say appeared to have no effects.