Pain assessment for children with sickle cell disease: Improved validity of diary keeping versus interview ratings

Abstract

This paper describes the development and piloting of the Central Middlesex Hospital Children's Health Diary (CMHCHD) for children and adolescents with sickle cell disease (SCD), and examines the reliability and validity of its key outcome measures. The diary has a semi‐structured format to be completed daily, covering general well‐being, common symptoms, pain events, coping strategies and the impact of any pain/illness events. Key summary measures consisted of total pain and impact scores for the diary‐keeping period. A pilot study was carried out with 25 children with SCD, and 25 matched controls who completed the diary for a four‐week period. Compliance with the procedure was satisfactory and adequate reliability was indicated although fatigue affects were observed during the fourth week of record keeping on some variables. The pain score had satisfactory concurrent validity with higher pain scores associated with more school absence (u = 88.5, p < .03) and greater disruption of daily life (u = 57, p < .01) and demonstrated encouraging construct validity by identifying expected higher rates of limb pain in children with SCD compared with controls (u = 196, p < .02). Parent and child interview ratings of pain frequency were not associated with quality of life measures, and could not discriminate between the clinical and non‐clinical population. Compared with both parent and child interview ratings of pain frequency, the total pain score was a more accurate predictor of the impact of pain in children's everyday life (F(47) = 10.80, p < .001). In conclusion, the CMHCHD shows considerable potential both for research, improving clinical assessment, and for enhancing coping strategies of children and their families.