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Developing a patient-centred tool for pain measurement and evaluation in autosomal dominant polycystic kidney disease

Clinical Kidney Journal Feb 11, 2021

El-Damanawi R, Lee M, Harris T, et al. - Although pain is an early and debilitating symptom affecting 60% of the autosomal dominant polycystic kidney disease (ADPKD) population, it is poorly described and management is suboptimal. Researchers here aimed at creating an ADPKD-specific pain assessment tool (APAT) that may facilitate pain research. An ADPKD-pain conceptual framework of key pain evaluation themes was constructed by a multidisciplinary team of clinical experts and patients following a systematic review of PATs employed in ADPKD studies and against international recommendations for pain trials. A new APAT was compiled covering domains prioritised within this framework utilizing components of questionnaires validated in other chronic pain disorders. One hundred twenty-nine APAT responses were obtained from 39 ADPKD participants with CKD stages 1-4. Observations revealed common occurrence of pain (52%) and associated analgesic use (29%). Pain was noted to be linked with increasing age, female gender, eGFR < 60mls/min/1.73m2, and hypertension, but not with kidney size . In this study, the APAT was identified to have good acceptability as well as reliability, and after further validation in a larger cohort, it could represent an invaluable tool for future ADPKD pain studies.

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