Dataset Information

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

ABSTRACT:

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.

SUBMITTER: El-Damanawi R

PROVIDER: S-EPMC8573025 | biostudies-literature | 2021 Nov

REPOSITORIES: biostudies-literature

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Publications

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

El-Damanawi Ragada R Lee Michael M Harris Tess T Cowley Laura B LB Scholtes Ingrid I Bond Simon S Sandford Richard N RN Wilkinson Ian B IB Casteleijn Niek F NF Hogan Marie C MC Karet Frankl Fiona E FE Hiemstra Thomas F TF

Clinical kidney journal 20210208 11

<h4>Background</h4>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.<h4>Methods</h4>Following a systematic review of PATs used in ADPKD studies and against international recommendations for pain trials, our multi-disciplinary team of clinical experts a ...[more]

PMID: 34754429

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Dataset Information

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

Background

Methods

Results

Conclusions

Publications

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

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