Multidisciplinary management of chronic refractory pain in autosomal dominant polycystic kidney disease

BACKGROUND: chronic pain is often difficult to manage in ADPKD patients and sometimes even leads to nephrectomy. We analyzed long-term efficacy of our innovative multidisciplinary protocol to treat chronic refractory pain, and that aims to preserve kidney function by applying among other sequential nerve blocks.METHODS: patients were eligible if pain was present ≥ 3 months with a score on a visual analogue scale (VAS) of ≥ 50 out of 100, was negatively affecting quality of life, and if there had been insufficient response to previous therapies, including opioid treatment. Treatment options were in respective order analgesics, cyst aspiration and fenestration, nerve blocks and nephrectomy.RESULTS: 101 patients were assessed in our clinic, mean age 50 ± 11 years and 65.3% were females. Eight patients were treated with medication, 6 by cyst aspiration or fenestration, 63 by nerve blocks, whereas 6 received surgery as first treatment option. Overall, 76.9% experienced a positive effect on pain complaints shortly after treatment. VAS score was reduced from 60/100 to 20/100 (p < 0.001) and patients lowered their number of non-opioid and opioid analgesics significantly (p < 0.001, p = 0.006 respectively). A substantial part of the patients (32.6%) needed additional treatment. At the end of follow-up only in 13 patients (12.9%) surgical intervention was necessary: 11 nephrectomies (of which 10 in patients already on kidney function replacement treatment), 1 liver transplantation, 1 partial hepatectomy. After a median follow-up of 4.5 [2.5-5.3] years, 69.0% of the patients still had less pain complaints.CONCLUSIONS: these data indicate that our multidisciplinary treatment protocol appears effective in reducing pain in the majority of patients with chronic refractory pain, while postponing or even avoiding in most patients surgical interventions as nephrectomy.