AB1408-HPR Content validity of a swedish version of the satisfaction with appearance scale in systemic sclerosis – the health professionals’ perspective

Abstract

Background Systemic sclerosis (SSc) can lead to visible changes in appearance such as varied skin texture, pigmentations, facial changes, and hand contractures which could generate concerns among patients. Valid questionnaires that capture these concerns are of great value. Objectives To assess content validity of a Swedish translation of the Satisfaction with Appearance Scale (SWAP) from the perspective of health professionals (HPs). Methods The Swedish SWAP (SWAP-Swe) was originally translated into the context of burn injuries. The multi-disciplinary research team applied it to the context of SSc by changing burn injury to SSc, changing part of the lay out, and using a version with two subscales: A) Social discomfort and B) Dissatisfaction with appearance. Initially, the validity was tested by individual interviews with 10 HPs with varied occupational background, who had 5.5 years (median, range 2–30) experience of SSc patient care. The interview guide included questions concerning comprehensibility, relevance, and suggestions of items to include and exclude. The interviews were sound recorded, transcribed verbatim, and analysed by manifest, partly deductive, content analysis. Results Comprehensibility Most HPs stated that items were not difficult to understand, nevertheless, concerns were highlighted in subscale A, and suggestions for improvements were made. In subscale B words that were connected the disease was thought to be missing. Relevance The items were overall considered to cover relevant aspects of appearance in SSc. Include/exclude items Inclusion of items concerning appearance of mouth, lips, nose, fingers, and feet was suggested. Other aspects such as stiffness when moving or limping were found to be lacking. Suggestions for exclusion covered“…appearance of my scalp” and items that was thought to be too harsh for the patients, such as “I don’t think people would like to touch me”. Fear of hurting the patients Most HPs felt that it might be inappropriate to focus on patients’ appearance and they feared hurt reactions. Negatively formulated subscale labels and emotionally demanding items in subscale A contributed to these thoughts. When and how to use Thoughts were expressed about when to use the questionnaire, how they would handle the results, and the importance of discussing appearance issues. Conclusions SWAP-Swe was, considered by HPs to be comprehensible and covering relevant aspects of appearance in SSc. However, further development of SWAP-Swe is suggested to better cover disease specific appearance topics and to limit potential risk of negative emotions among patients. Interviews with patients with SSc will further contribute to the content validity of SWAP-Swe. References [1] Jewett LR, et al. Development and validation of the brief-satisfaction with appearance scale for systemic sclerosis. Arthritis Care Res. 2010;62:1779–86 [2] Dahl O, et al. The cultural adaptation and validation of a Swedish version of the satisfaction with appearance scale (SWAP-Swe). Burns2014;40:598–605 Acknowledgements We are grateful to Region of Norrbotten for research funding. Disclosure of Interest None declared