Investigating children's beliefs about juvenile arthritis : a study using cognitive interviewing

Ghio, D; Thomson, W; Baildam, EM; Hyrich, K; Beresford, MW; Lydon, C; Lloyd, O; McCann, LJ; CAPS, Childhood Arthritis Prospective Study; Ulph, F; Cordingley, L

Abstract

Background/Purpose: Juvenile idiopathic arthritis (JIA) is the most common chronic rheumatic illness in childhood. An understanding of how children make sense of their JIA symptoms is important for long-term management and treatment. There is increasing recognition that outcomes such as pain and disability are associated with an individual’s beliefs about illness. In adults, beliefs about inflammatory arthritis were found to predict disability and quality of life independently of disease activity (Graves et al, 2009). Beliefs have been assessed in adults using the Illness Perception Questionnaire (IPQ: Weinman et al, 1996). The aim of this study was to investigate the extent to which IPQ items can be understood by young people with JIA and the extent to which responses were associated with verbal ability and parent’s beliefs.
Method: Data were collected from 18 young people aged 11-16 diagnosed with JIA using cognitive interviewing (Willis et al, 1991). This involved two techniques, “think aloud” where participants describe their thoughts as they complete IPQ items and verbal probing where the interviewer elicits specific information about responses. All interviews were audio-recorded, transcribed and analysed using content analysis and thematic analysis. Participants also completed the British Picture Vocabulary Scale (Dunn, & Dunn, 1997) a measure of children’s vocabulary to investigate whether verbal ability influences their responses to the IPQ items. Parents of participants completed written13 open-ended questions on their beliefs about their child’s JIA which were analysed thematically.

Result: The analysis indicated that IPQ domains mapped onto illness concepts that were relevant to the young people with JIA, however, some individual items and response options may need adapting to take account of less abstract ways of thinking about illness and symptoms. Of particular interest were items assessing controllability of JIA and understanding of cause. Most participants believed they had a good understanding of their symptoms, but felt that their views were less well represented by IPQ items assessing beliefs about the causes of JIA. Difficulties were also found in relation to items asking about emotions with participants apparently disagreeing with IPQ items despite revealing that they felt emotional. Ability to complete the IPQ did not seem to depend upon verbal fluency. As anticipated, children’s beliefs about JIA were largely reflected in the accounts of their parents.

Conclusion: There is a recognised need to capture patient reported outcome and process measures using valid, reliable and acceptable tools. For younger patients this presents particular challenges. The findings from this study indicate that children and young people with JIA find the domains assessed by the IPQ relevant but it did have specific limitations. We also gained some additional insights into the ways in which children’s beliefs are influenced by those of their parents. Findings from this study will be used to adapt the IPQ for children with JIA in order to understand the long-term influences of children’s beliefs upon outcomes including pain and disability.

• Presentation Conference Type: Poster
• Conference Name: ACR/ARHP Scientific Meeting 2011
• End Date: Nov 9, 2011
• Publication Date: Nov 6, 2011
• Deposit Date: Jul 27, 2020
• Additional Information: Event Type : Conference; Projects : Childhood Arthritis Prospective Study