The Revised-Perceived Illness Experience Scale (R-PIE): Data From the Barretstown Studies

Abstract

The Perceived Illness Experience Scale (PIE)¹ was developed to measure children's perception of their illness experience. In this article, the authors examine the previously uninvestigated factor structure of the PIE using the responses of 184 European children (mean age = 11.61 years, SD = 2.31) with life-threatening illnesses. The findings showed a 6-factor solution: (1) School/Peer Rejection, (2) Thinking About Illness, (3) Physical Appearance, (4) Interference With Activity, (5) Parental Responses, and (6) Manipulation. Children's mean scores on each subscale and for the composite Revised PIE (R-PIE) were generally low, suggesting that as a group, children do not perceive that their illness has an especially negative impact on their lives. There were differences between the children's mean scores on some subscales depending on their gender, nationality grouping, and type of illness. These findings provide empirical support for the R-PIE and suggest its usefulness in measuring children's experience of different illnesses in multinational settings.

Keywords:

• chronic and life-threatening illness
• factor analysis
• pediatric health-related quality of life
• Perceived Illness Experience Scale