P NATALE1,2, E HANNAN1, B SAUTENET3, A JU1, R PERRONE4, E BURNETTE5, N CASTELEIJN6, A CHAPMAN7, S EASTTY5, R GANSEVOORT6, M HOGAN8, S HORIE9, B KNEBELMANN10, R LEE11, R MUSTAFA12, R SANDFORD13, A BAUMGART1, A TONG1, G STRIPPOLI1,2, J CRAIG14, G RANGAN15, Y CHO16
1University Of Sydney, , Australia, 2University of Bari, , Italy, 3Université de Nantes, , France, 4Tufts University School of Medicine, , United States, 5United Kingdom, , United Kingdom, 6University Medical Centre Groningen, , The Netherlands, 7University of Chicago, , United States, 8Mayo Clinic, , United States, 9Juntendo University, , Japan, 10Université de Paris APHP, , France, 11Australia, , Australia, 12University of Kansas , , United States, 13University of Cambridge, , United Kingdom, 14Flinders University, , Australia, 15Westmead Institute for Medical Research, , Australia, 16University of Queensland, , Australia
Aim: To identify the characteristics, content, and psychometric properties of measures for pain used in ADPKD.
Background: Pain is a debilitating symptom that is experienced by more than 60% of people with autosomal dominant polycystic kidney disease (ADPKD). A recent systematic review of randomized trials in ADPKD found that only 24% studies reported pain, with multiple measures used. However, there is little detailed information about the content and validity of measures used in ADPKD.
Methods: We conducted a systematic review including all trials and observational studies that reported pain in people with ADPKD. Items from all measures were categorized into content and measurement dimensions of pain. We assessed the general characteristics and psychometric properties of all measures.
Results: 118 studies, we identified 26 measures: 12 (46%) measures were developed for a non-ADPKD population, 1 (4%) for chronic kidney disease, 2 (8%) for polycystic liver disease and 11 (42%) specifically for ADPKD. Ten anatomical sites were included, with the lower back the most common (10 measures [39%]), four measurement dimensions (intensity (23 [88%]), frequency (3 [12%]), temporality (2 [8%]), and sensory (21 [81%]), two pain types, nociceptive including visceral (15 [58%]) and somatic (5 [20%]), and neuropathic (2 [8%]), and twelve impact dimensions, where the most frequent was work (5 [31%]). The validation data for the measures were variable and only the ADPKD Impact Scale reported all psychometric domains.
Conclusions: The measures for pain in ADPKD varied in terms of content and length, and most had not been validated in ADPKD. A standardized psychometrically robust measure that captures patient-important dimensions of pain is needed to evaluate and manage this debilitating complication of ADPKD.
Patrizia Natale, Research Associate, has completed an MSc in Clinical Epidemiology at the University of Sydney, and a bachelor’s degree in Pharmacy. Patrizia is a researcher at the Centre of Kidney Research at the University of Sydney, and she has experience in Cochrane Systematic Reviews in patients with all stages of CKD (including patients undergoing dialysis and kidney transplant recipients), and in the design and conduct of randomized controlled trials and long-term cohort studies. She has completed the PhD in nephrology and kidney transplantation at the University of Bari, Italy.