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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

Kawadler, JM; Slee, A; Stotesbury, H; Koelbel, M; Balfour, P; Saunders, DE; Rees, D; ... Liossi, C; + view all (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. Green open access

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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.

Type: Article
Title: 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
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/bjh.15841
Publisher version: https://doi.org/10.1111/bjh.15841
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: paediatrics, sickle cell anaemia, sickle cell disease
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Developmental Neurosciences Dept
URI: https://discovery.ucl.ac.uk/id/eprint/10071215
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