Validating a pain perception questionnaire for young people with juvenile arthritis

Ghio, D; Calam, R; Hyrich, KL; Thomson, W; CAPS, Childhood Arthritis Prospective Study; Cordingley, L

Abstract

Background: The ways in which people perceive their illness are known to affect long-term outcomes. The Common Sense-Self-Regulatory Model (CS-SRM) is used as a theoretical framework to investigate the influence of illness beliefs on outcomes and the Revised Illness Perception Questionnaire (IPQ-R) is used to assess key illness beliefs. However, these approaches have rarely been used with adolescents nor is there a validated adolescent version of the IPQ-R. The aim of this work is to develop an illness perception questionnaire for adolescents with JIA.

Methods: The first phase was a two-stage qualitative analysis of transcripts from cognitive interviews with 20 adolescents. It became clear that participants focused on their main symptom of JIA, in this case pain, rather than JIA. Modifications to IPQ-R items were undertaken to devise the first version of the Pain Perception Questionnaire for Young People (PPQ-YP). It was then sent to 18 adolescents aged between 11 and 16 years to assess linguistic and face validity. Participants were asked to think of a recent pain to answer the questionnaire and provide feedback on the language and length. After further modifications, the PPQ-YP was sent to 65 patients with JIA to test further psychometric properties.

Results: The thematic analysis showed that episodic and unpredictable nature of JIA pain experiences meant that the existing adult version of the IPQ-R did not adequately capture adolescents’ pain beliefs. Furthermore, the adolescents reported that their behaviour was determined by their pain experiences. The content analysis of feedback about of the IPQ-R showed which items elicited the most problems. For example, negatively worded items led ‘incongruent endorsement’ meaning that responses to these items reflected the opposite response to the one intended. These results in addition to the thematic analysis determined the modifications of the IPQ-R and the development of new items of the PPQ-YP. The participants who reviewed the PPQ-YP completed a detailed feedback questionnaire and this led to further modifications. 65 adolescents with juvenile arthritis completed version 2, Cronbach’s alpha for the domains ranged from 0.60 for personal control to 0.93 for emotional representation. Further validation and re-test reliability testing of this version of the PPQ-YP is currently underway.

Conclusion: Currently, there are no validated adolescent questionnaires that capture the full range of pain beliefs related to JIA. The PPQ-YP is a theory-driven questionnaire consisting of nine domains of pain beliefs. By using a framework that clearly defines the relationship between beliefs outcomes it is hoped that data generated by the PPQ-YP will provide stronger predictors of an adolescent’s behaviour by facilitating better assessment of adolescent beliefs. This can lead to the development of new interventions for adolescents with JIA.

Citation

Ghio, D., Calam, R., Hyrich, K., Thomson, W., CAPS, C. A. P. S., & Cordingley, L. Validating a pain perception questionnaire for young people with juvenile arthritis. Poster presented at Rheumatology 2015, Manchester, UK

• Presentation Conference Type: Poster
• Conference Name: Rheumatology 2015
• Conference Location: Manchester, UK
• End Date: Apr 30, 2015
• Online Publication Date: Apr 20, 2015
• Publication Date: Apr 30, 2015
• Deposit Date: Jul 27, 2020
• DOI: https://doi.org/10.1093/rheumatology/kev090.033
• Publisher URL: https://doi.org/10.1093/rheumatology/kev090.033
• Related Public URLs: https://na.eventscloud.com/ehome/rheumatology2015/home/
• Additional Information: Access Information : The published abstract of this paper is free to read using the link above; Event Type : Conference; Projects : Childhood Arthritis Prospective Study