Quality of life (QOL) and illness perceptions are important considerations when managing adolescents with sickle cell disease (SCD). This study aims to assess the psychometric properties of the SCD-specific paediatric quality of life (PedsQL™-SCD) and the revised illness perception questionnaires (IPQ-R) in Jamaican adolescents with SCD. One hundred and fifty Jamaican adolescents (M: 74, F: 76; mean age 16.1 ± 1.9 years, range: 13–19 years) completed the IPQ-R, PedsQL™-SCD (teen and parent forms) and a knowledge questionnaire. Socio-demographic and clinical data were also collected and the latter were used to create a severity index. Instruments’ structure, feasibility, reliability and construct validity were assessed. The Cronbach’s alpha for the 24-item knowledge questionnaire was 0.85; IPQ-R domains from 0.56 to 0.79 (except ‘treatment control’: 0.34); PedsQL teen-form domains from 0.70 to 0.93 and PedsQL parent-form domains from 0.72 to 0.95. All scales and subscales had low floor effects but some teen subscales yielded high ceiling effects. The SCD-specific scale and subscales showed high sensitivity as they varied significantly by severity of illness. Factor analysis of causal items on IPQ-R yielded a three-factor structure, explaining a total variance of 52.1%. The factors could be labelled as ‘psychological’, ‘physical’ and ‘innate/behavioural risk factors’. The teen QOL scores had significant negative correlations with the severity score (r: −0.46, p-value <0.001); IPQ identity domain (r: −0.42, p-value <0.001); IPQ consequences subscale (r: −0.36, p-value <0.001); IPQ cyclical timeline subscale (r: −0.31, p-value <0.001) and IPQ emotional representation subscale (r: −0.29, p-value <0.01). The severity index also had significant correlation with the QOL parent form (r: −0.44, p-value <0.001); IPQ identity domain (r: 0.43, p-value <0.01) and IPQ consequences domain (r: 0.35, p-value <0.001).

In conclusion, both the IPQ-R and PedsQL™-SCD demonstrate robust psychometric properties in adolescents with SCD. Continuing longitudinal study will provide further assessment of the instruments such as ‘responsiveness to change’.