Suffering in children and adolescents in paediatric palliative care in Spain: psychometric properties of the qESNA scale

Abstract

Objective

To analyze the psychometric properties of the qESNA scale and its usefulness to assess the suffering of paediatric patients with life-limiting and/or life-threatening diseases (children with LLTC) in clinical practice.

Methods

Cross-sectional and longitudinal study in 58 patients in Spain (female, 32.8%; mean age, 15.6 [SD, 4.5]; age range, 8–23 years), with administration of the qESNA scale along with other scales to assess anxiety, depression, emotion regulation and psychosocial functioning. We performed exploratory and confirmatory factor analyses and calculated goodness-of-fit indices were calculated; we assessed reliability by means of the Cronbach alpha and temporal stability and convergent validity through the intraclass correlation coefficient with scales used to assess psychological disorders and the specificity and sensitivity through ROC curves.

Results

The factor analysis identified a 14-item scale with 3 factors, a comparative fit index of 0.93, a Tucker-Lewis index of 0.91 and a root mean square error of approximation of 0.07. The Cronbach alpha was 0.85 and the intraclass correlation coefficient was 0.66. The convergent validity was high for the correlation to the risk of depression (−0.69) and of anxiety (−0.60) and emotional changes (−0.59). The analysis of the ROC curves showed that a score of less than 81 would be indicative of suffering, with a sensitivity of 83.33% and a specificity of 93.48%.

Conclusions

This study confirmed that the psychometric properties of the qESNA scale are good and the scale’s usefulness as an instrument to detect emotional suffering in children with life-limiting or life-threatening illnesses in clinical practice.