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

Ragada El-Damanawi, Michael Lee, Tess Harris, Laura B. Cowley, Ingrid Scholtes, Simon Bond, Richard N. Sandford, Ian B. Wilkinson, Niek F. Casteleijn, Marie C. Hogan, Fiona E. Karet Frankl, Thomas F. Hiemstra

Research output: Contribution to journalArticlepeer-review


Background: Pain affects 60% of the autosomal dominant polycystic kidney disease (ADPKD) population. Despite being an early and debilitating symptom, it is poorly characterized and management is suboptimal. This study aimed to develop an ADPKD-specific pain assessment tool (APAT) to facilitate pain research. Methods: Following a systematic review of PATs used in ADPKD studies and against international recommendations for pain trials, our multi-disciplinary team of clinical experts and patients constructed an ADPKD-pain conceptual framework of key pain evaluation themes. We compiled a new APAT covering domains prioritized within our framework using components of questionnaires validated in other chronic pain disorders. The APAT was administered longitudinally within a randomized high-water intake trial (NCT02933268) to ascertain feasibility and provide pilot data on ADPKD pain. Results: Thirty-nine ADPKD participants with chronic kidney disease Stages 1-4 provided 129 APAT responses. Each participant completed a median of 3 (range 1-10) assessments. Respondents' mean ± standard deviation age was 47 ± 13 years; 59% (23) were female; and 69% (27) had enlarged kidneys with median time from diagnosis 14.2 (interquartile range 7.0-25.9) years. Pain (52%) and associated analgesic use (29%) were common. Pain severity was associated with increasing age [odds ratio (OR) = 1.07, P = 0.009], female gender (OR = 4.34, P = 0.018), estimated glomerular filtration rate <60 mL/min/1.73 m2 (OR = 5.45, P = 0.021) and hypertension (OR = 12.11, P = 0.007), but not with kidney size (P = 0.23). The APAT achieved good internal consistency (Cronbach's alpha coefficient = 0.91) and test-retest reliability (domain intra-class correlation coefficients ranging from 0.62 to 0.90). Conclusions: The APAT demonstrated good acceptability and reliability, and following further validation in a larger cohort could represent an invaluable tool for future ADPKD pain studies.

Original languageEnglish (US)
Pages (from-to)2338-2348
Number of pages11
JournalClinical Kidney Journal
Issue number11
StatePublished - Nov 1 2021


  • analgesia
  • chronic pain
  • pain
  • patient-reported outcomes

ASJC Scopus subject areas

  • Nephrology
  • Transplantation


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