Kawadler, JM; Slee, A; Stotesbury, H; Koelbel, M; Balfour, P; Saunders, DE; Rees, D; ... Liossi, C; + view all Kawadler, JM; Slee, A; Stotesbury, H; Koelbel, M; Balfour, P; Saunders, DE; Rees, D; Howard, J; Inusa, B; Pelidis, M; Kesse-Adu, R; Chakravorty, S; Awogbade, M; Clark, CA; Kirkham, FJ; Liossi, C; - view fewer (2019) Index of Pain Experience in Sickle Cell Anaemia (IPESCA): development from daily pain diaries and initial findings from use with children and adults with sickle cell anaemia. British Journal of Haematology , 186 (2) pp. 360-363. 10.1111/bjh.15841.

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Abstract

Frequent daily pain occurs in sickle cell anaemia (SCA). There is an unmet need in clinical trials for a composite pain endpoint capturing complex aspects of daily pain from pain diaries. This study introduces the Index of Pain Experience in SCA (IPESCA), which combines location, frequency, intensity and type of pain into one composite index. To validate IPESCA, it was compared with two months of pain burden recall from the Sickle Cell Pain Burden Interview-Youth (SCPBI-Y) questionnaire. During the diary period, eleven patients (21%) reported no pain and 42 (79%) reported some pain. IPESCA demonstrated the ability to detect change across SCPBI-Y pain burden categories at Month 1 (p<0.001) and Month 2 (p<0.01) and correlated with increasing age (p<0.001). IPESCA is a simple pain endpoint related to the social and emotional aspects of pain burden and may be promising for future trials.

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