{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,12]],"date-time":"2026-05-12T11:52:21Z","timestamp":1778586741809,"version":"3.51.4"},"reference-count":48,"publisher":"Oxford University Press (OUP)","issue":"11","license":[{"start":{"date-parts":[[2021,2,8]],"date-time":"2021-02-08T00:00:00Z","timestamp":1612742400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021,11,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Thirty-nine ADPKD participants with chronic kidney disease Stages 1\u20134 provided 129 APAT responses. Each participant completed a median of 3 (range 1\u201310) assessments. Respondents\u2019 mean \u00b1 standard deviation age was 47\u2009\u00b1\u200913\u2009years; 59% (23) were female; and 69% (27) had enlarged kidneys with median time from diagnosis 14.2 (interquartile range 7.0\u201325.9) years. Pain (52%) and associated analgesic use (29%) were common. Pain severity was associated with increasing age [odds ratio (OR) = 1.07, P\u2009=\u20090.009], female gender (OR = 4.34, P\u2009=\u20090.018), estimated glomerular filtration rate\u2009&amp;lt;60\u2009mL\/min\/1.73\u2009m2 (OR = 5.45, P\u2009=\u20090.021) and hypertension (OR = 12.11, P\u2009=\u20090.007), but not with kidney size (P\u2009=\u20090.23). The APAT achieved good internal consistency (Cronbach\u2019s alpha coefficient\u2009=\u20090.91) and test\u2013retest reliability (domain intra-class correlation coefficients ranging from 0.62 to 0.90).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec>","DOI":"10.1093\/ckj\/sfaa259","type":"journal-article","created":{"date-parts":[[2020,12,2]],"date-time":"2020-12-02T22:41:16Z","timestamp":1606948876000},"page":"2338-2348","source":"Crossref","is-referenced-by-count":15,"title":["Developing a patient-centred tool for pain measurement and evaluation in autosomal dominant polycystic kidney disease"],"prefix":"10.1093","volume":"14","author":[{"given":"Ragada","family":"El-Damanawi","sequence":"first","affiliation":[{"name":"Department of Medicine, Division of Experimental Medicine and Immunotherapeutics, University of Cambridge, Cambridge, UK"},{"name":"Cambridge Clinical Trials Unit, Cambridge, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael","family":"Lee","sequence":"additional","affiliation":[{"name":"Department of Medicine, Division of Anaesthesia, University of Cambridge, Cambridge, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tess","family":"Harris","sequence":"additional","affiliation":[{"name":"PKD Charity, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura B","family":"Cowley","sequence":"additional","affiliation":[{"name":"Cambridge Clinical Trials Unit, Cambridge, UK"},{"name":"Patient Led Research Hub, Cambridge Clinical Trials Unit, Cambridge, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ingrid","family":"Scholtes","sequence":"additional","affiliation":[{"name":"Department of Medicine, Division of Anaesthesia, University of Cambridge, Cambridge, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Simon","family":"Bond","sequence":"additional","affiliation":[{"name":"Cambridge Clinical Trials Unit, Cambridge, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Richard N","family":"Sandford","sequence":"additional","affiliation":[{"name":"Department of Medical Genetics, University of Cambridge, Cambridge, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ian B","family":"Wilkinson","sequence":"additional","affiliation":[{"name":"Department of Medicine, Division of Experimental Medicine and Immunotherapeutics, University of Cambridge, Cambridge, UK"},{"name":"Cambridge Clinical Trials Unit, Cambridge, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Niek F","family":"Casteleijn","sequence":"additional","affiliation":[{"name":"Department of Nephrology, University of Groningen, Groningen, The Netherlands"},{"name":"Department of Urology, University of Groningen, Groningen, The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marie C","family":"Hogan","sequence":"additional","affiliation":[{"name":"Division of Nephrology and Hypertension, Mayo Clinic, Rochester, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fiona E","family":"Karet Frankl","sequence":"additional","affiliation":[{"name":"Department of Medical Genetics, University of Cambridge, Cambridge, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Thomas F","family":"Hiemstra","sequence":"additional","affiliation":[{"name":"Department of Medicine, Division of Experimental Medicine and Immunotherapeutics, University of Cambridge, Cambridge, UK"},{"name":"Cambridge Clinical Trials Unit, Cambridge, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2021,2,8]]},"reference":[{"key":"2021110804534638900_sfaa259-B1","doi-asserted-by":"crossref","first-page":"148","DOI":"10.2215\/CJN.00330705","article-title":"Volume progression in autosomal dominant polycystic kidney disease: the major factor determining clinical outcomes","volume":"1","author":"Grantham","year":"2006","journal-title":"Clin J Am Soc Nephrol"},{"key":"2021110804534638900_sfaa259-B2","doi-asserted-by":"crossref","first-page":"1631","DOI":"10.1046\/j.1523-1755.2001.00985.x","article-title":"Pain management in polycystic kidney disease","volume":"60","author":"Bajwa","year":"2001","journal-title":"Kidney Int"},{"key":"2021110804534638900_sfaa259-B3","doi-asserted-by":"crossref","first-page":"e1","DOI":"10.1053\/j.ackd.2010.01.005","article-title":"Evaluation and management of pain in autosomal dominant polycystic kidney disease","volume":"17","author":"Hogan","year":"2010","journal-title":"Adv Chronic Kidney Dis"},{"key":"2021110804534638900_sfaa259-B4","doi-asserted-by":"crossref","first-page":"214","DOI":"10.1053\/j.ajkd.2013.08.017","article-title":"Health-related quality of life in patients with autosomal dominant polycystic kidney disease and CKD stages 1-4: a cross-sectional study","volume":"63","author":"Miskulin","year":"2014","journal-title":"Am J Kidney Dis"},{"key":"2021110804534638900_sfaa259-B5","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1186\/1471-2369-14-179","article-title":"Quality of life of patients with ADPKD\u2014Toranomon PKD QOL study: cross-sectional study","volume":"14","author":"Suwabe","year":"2013","journal-title":"BMC Nephrol"},{"key":"2021110804534638900_sfaa259-B6","doi-asserted-by":"crossref","first-page":"1470","DOI":"10.1016\/j.juro.2014.10.124","article-title":"Management of pain in autosomal dominant polycystic kidney disease and anatomy of renal innervation","volume":"193","author":"Tellman","year":"2015","journal-title":"J Urol"},{"key":"2021110804534638900_sfaa259-B7","doi-asserted-by":"crossref","first-page":"iv142","DOI":"10.1093\/ndt\/gfu073","article-title":"A stepwise approach for effective management of chronic pain in autosomal-dominant polycystic kidney disease","volume":"29","author":"Casteleijn","year":"2014","journal-title":"Nephrol Dial Transplant"},{"key":"2021110804534638900_sfaa259-B8","doi-asserted-by":"crossref","first-page":"607","DOI":"10.1016\/j.semnephrol.2015.10.013","article-title":"KHA-CARI autosomal dominant kidney disease guideline: management of chronic pain","volume":"35","author":"Savige","year":"2015","journal-title":"Semin Nephrol"},{"key":"2021110804534638900_sfaa259-B9","doi-asserted-by":"crossref","first-page":"160","DOI":"10.1093\/ndt\/16.1.160","article-title":"Laparoscopic renal denervation for intractable ADPKD-related pain","volume":"16","author":"Valente","year":"2001","journal-title":"Nephrol Dial Transplant"},{"key":"2021110804534638900_sfaa259-B10","doi-asserted-by":"crossref","first-page":"1105","DOI":"10.1016\/S0022-5347(01)67520-7","article-title":"Laparoscopic marsupialization of the painful polycystic kidney","volume":"153","author":"Teichman","year":"1995","journal-title":"J Urol"},{"key":"2021110804534638900_sfaa259-B11","doi-asserted-by":"crossref","first-page":"991","DOI":"10.1089\/end.2007.0359","article-title":"Follow-up for laparoscopic renal denervation and nephropexy for autosomal dominant polycystic kidney disease-related pain in pediatrics","volume":"22","author":"Casale","year":"2008","journal-title":"J Endourol"},{"key":"2021110804534638900_sfaa259-B12","doi-asserted-by":"crossref","first-page":"597","DOI":"10.1089\/089277901750426364","article-title":"Laparoscopic cyst decortication using the harmonic scalpel for symptomatic autosomal dominant polycystic kidney disease","volume":"15","author":"McNally","year":"2001","journal-title":"J Endourol"},{"key":"2021110804534638900_sfaa259-B13","doi-asserted-by":"crossref","first-page":"972","DOI":"10.1016\/j.kint.2016.12.007","article-title":"Novel treatment protocol for ameliorating refractory, chronic pain in patients with autosomal dominant polycystic kidney disease","volume":"91","author":"Casteleijn","year":"2017","journal-title":"Kidney Int"},{"key":"2021110804534638900_sfaa259-B14","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1053\/j.ajkd.2016.08.028","article-title":"Tolvaptan and kidney pain in patients with autosomal dominant polycystic kidney disease: secondary analysis from a randomized controlled trial","volume":"69","author":"Casteleijn","year":"2017","journal-title":"Am J Kidney Dis"},{"key":"2021110804534638900_sfaa259-B15","doi-asserted-by":"crossref","first-page":"790","DOI":"10.1093\/ndt\/gfv010","article-title":"A painful inheritance - patient perspectives on living with polycystic kidney disease: thematic synthesis of qualitative research","volume":"30","author":"Tong","year":"2015","journal-title":"Nephrol Dial Transplant"},{"key":"2021110804534638900_sfaa259-B16","doi-asserted-by":"crossref","first-page":"1130","DOI":"10.1093\/ndt\/gfv299","article-title":"Increased psychosocial risk, depression and reduced quality of life living with autosomal dominant polycystic kidney disease","volume":"31","author":"Simms","year":"2016","journal-title":"Nephrol Dial Transplant"},{"key":"2021110804534638900_sfaa259-B17","doi-asserted-by":"crossref","first-page":"560","DOI":"10.1186\/s13063-017-2298-4","article-title":"Standardised outcomes in nephrology\u2014polycystic kidney disease (SONG-PKD): study protocol for establishing a core outcome set in polycystic kidney disease","volume":"18","author":"Cho","year":"2017","journal-title":"Trials"},{"key":"2021110804534638900_sfaa259-B18","doi-asserted-by":"crossref","first-page":"S260","DOI":"10.1016\/j.ekir.2019.05.649","article-title":"SUN-244 range and variability of outomes reported in randomized trials conducted in polycystic kidney disease: a systematic review","volume":"4","author":"Sautenet","year":"2019","journal-title":"Kidney Int Rep"},{"key":"2021110804534638900_sfaa259-B19","author":"ADPKD-PDS - Autosomal Dominant Polycystic Kidney Disease Pain and Discomfort Scale"},{"key":"2021110804534638900_sfaa259-B20","doi-asserted-by":"crossref","first-page":"225","DOI":"10.1053\/j.ajkd.2017.08.020","article-title":"Development of the autosomal dominant polycystic kidney disease impact scale: a new health-related quality-of-life instrument","volume":"71","author":"Oberdhan","year":"2018","journal-title":"Am J Kidney Dis"},{"key":"2021110804534638900_sfaa259-B21","first-page":"692A","article-title":"Patient-reported pain in autosomal dominant polycystic kidney disease (ADPKD): initial concepts based on patient focus group discussions","volume":"SA-PO283","author":"Oberdhan","year":"2013","journal-title":"American Society of Nephrology Kidney Week"},{"key":"2021110804534638900_sfaa259-B22","doi-asserted-by":"crossref","first-page":"310","DOI":"10.1093\/bjaed\/mkw014","article-title":"Measurement in pain medicine","volume":"16","author":"Bendinger","year":"2016","journal-title":"BJA Educ"},{"key":"2021110804534638900_sfaa259-B23","doi-asserted-by":"crossref","first-page":"e0199814","DOI":"10.1371\/journal.pone.0199814","article-title":"Psychological, cognitive factors and contextual influences in pain and pain-related suffering as revealed by a combined qualitative and quantitative assessment approach","volume":"13","author":"Bustan","year":"2018","journal-title":"PLoS One"},{"key":"2021110804534638900_sfaa259-B24","doi-asserted-by":"crossref","first-page":"879","DOI":"10.1002\/ejp.706","article-title":"How many dimensions are needed to describe pain properly?","volume":"19","author":"Moisset","year":"2015","journal-title":"Eur J Pain"},{"key":"2021110804534638900_sfaa259-B25","doi-asserted-by":"crossref","first-page":"9","DOI":"10.1016\/j.pain.2004.09.012","article-title":"Core outcome measures for chronic pain clinical trials: IMMPACT recommendations","volume":"113","author":"Dworkin","year":"2005","journal-title":"Pain"},{"key":"2021110804534638900_sfaa259-B26","doi-asserted-by":"crossref","first-page":"1851","DOI":"10.1097\/j.pain.0000000000000602","article-title":"Patient phenotyping in clinical trials of chronic pain treatments: IMMPACT recommendations","volume":"157","author":"Edwards","year":"2016","journal-title":"Pain"},{"key":"2021110804534638900_sfaa259-B27","first-page":"e022859","article-title":"Randomised controlled trial of high versus ad libitum water intake in patients with autosomal dominant polycystic kidney disease: rationale and design of the DRINK feasibility trial","volume":"8","author":"El-Damanawi","year":"2018","journal-title":"BMJ Open"},{"key":"2021110804534638900_sfaa259-B28","doi-asserted-by":"crossref","first-page":"258","DOI":"10.1093\/qjmed\/hcz278","article-title":"High water vs. ad libitum water intake for autosomal dominant polycystic kidney disease: a randomized controlled feasibility trial","volume":"113","author":"El-Damanawi","year":"2019","journal-title":"QJM"},{"key":"2021110804534638900_sfaa259-B29","doi-asserted-by":"crossref","first-page":"1727","DOI":"10.1007\/s11136-011-9903-x","article-title":"Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L)","volume":"20","author":"Herdman","year":"2011","journal-title":"Qual Life Res"},{"key":"2021110804534638900_sfaa259-B30","doi-asserted-by":"crossref","first-page":"127","DOI":"10.1007\/s40258-017-0310-5","article-title":"EQ-5D and the EuroQol group: past, present and future","volume":"15","author":"Devlin","year":"2017","journal-title":"Appl Health Econ Health Policy"},{"key":"2021110804534638900_sfaa259-B31","doi-asserted-by":"crossref","first-page":"309","DOI":"10.1097\/00002508-200409000-00005","article-title":"Validity of the brief pain inventory for use in documenting the outcomes of patients with noncancer pain","volume":"20","author":"Keller","year":"2004","journal-title":"Clin J Pain"},{"key":"2021110804534638900_sfaa259-B32","author":"PROMIS Scale v1.0 - Pain Intensity 3a"},{"key":"2021110804534638900_sfaa259-B33","doi-asserted-by":"crossref","first-page":"35","DOI":"10.1016\/j.pain.2009.02.007","article-title":"Development and initial validation of an expanded and revised version of the short-form McGill pain questionnaire (SF-MPQ-2)","volume":"144","author":"Dworkin","year":"2009","journal-title":"Pain"},{"key":"2021110804534638900_sfaa259-B34","doi-asserted-by":"crossref","first-page":"364","DOI":"10.1016\/j.jpain.2005.01.350","article-title":"Medication Quantification Scale Version III: update in medication classes and revised detriment weights by survey of American Pain Society physicians","volume":"6","author":"Harden","year":"2005","journal-title":"J Pain"},{"key":"2021110804534638900_sfaa259-B35","doi-asserted-by":"crossref","first-page":"463","DOI":"10.1016\/0304-3959(92)90099-W","article-title":"The relationship between pain sensitivity and blood pressure in normotensives","volume":"48","author":"Bruehl","year":"1992","journal-title":"Pain"},{"key":"2021110804534638900_sfaa259-B36","doi-asserted-by":"crossref","first-page":"87","DOI":"10.1016\/j.pain.2007.11.011","article-title":"Baroreflex sensitivity associated hypoalgesia in healthy states is altered by chronic pain","volume":"138","author":"Chung","year":"2008","journal-title":"Pain"},{"key":"2021110804534638900_sfaa259-B37","doi-asserted-by":"crossref","first-page":"e003320","DOI":"10.1136\/bmjopen-2013-003320","article-title":"Do men consult less than women? An analysis of routinely collected UK general practice data","volume":"3","author":"Wang","year":"2013","journal-title":"BMJ Open"},{"key":"2021110804534638900_sfaa259-B38","doi-asserted-by":"crossref","first-page":"e97","DOI":"10.2196\/jmir.4883","article-title":"The effectiveness of self-management mobile phone and tablet apps in long-term condition management: a systematic review","volume":"18","author":"Whitehead","year":"2016","journal-title":"J Med Internet Res"},{"key":"2021110804534638900_sfaa259-B39","doi-asserted-by":"crossref","first-page":"1561","DOI":"10.1111\/j.1523-1755.2004.00921.x","article-title":"Pain patterns in patients with polycystic kidney disease","volume":"66","author":"Bajwa","year":"2004","journal-title":"Kidney Int"},{"key":"2021110804534638900_sfaa259-B40","doi-asserted-by":"crossref","first-page":"267","DOI":"10.1016\/j.jvir.2007.10.007","article-title":"Transcatheter arterial embolization with absolute ethanol injection for enlarged polycystic kidneys after failed metallic coil embolization","volume":"19","author":"Sakuhara","year":"2008","journal-title":"J Vasc Interv Radiol"},{"key":"2021110804534638900_sfaa259-B41","doi-asserted-by":"crossref","first-page":"926","DOI":"10.1016\/S0272-6386(99)70052-1","article-title":"Transcatheter renal arterial embolization therapy on a patient with polycystic kidney disease on hemodialysis","volume":"34","author":"Ubara","year":"1999","journal-title":"Am J Kidney Dis"},{"key":"2021110804534638900_sfaa259-B42","doi-asserted-by":"crossref","first-page":"94","DOI":"10.1111\/j.1464-410X.2007.07229.x","article-title":"Pretransplant laparoscopic nephrectomy in adult polycystic kidney disease: a single centre experience","volume":"101","author":"Desai","year":"2008","journal-title":"BJU Int"},{"key":"2021110804534638900_sfaa259-B43","doi-asserted-by":"crossref","first-page":"627","DOI":"10.1016\/j.juro.2006.09.026","article-title":"Limitations of laparoscopy for bilateral nephrectomy for autosomal dominant polycystic kidney disease","volume":"177","author":"Lipke","year":"2007","journal-title":"J Urol"},{"key":"2021110804534638900_sfaa259-B44","doi-asserted-by":"crossref","first-page":"345","DOI":"10.1089\/089277903767923100","article-title":"Laparoscopic cyst decortication in autosomal dominant polycystic kidney disease: impact on pain, hypertension, and renal function","volume":"17","author":"Lee","year":"2003","journal-title":"J Endourol"},{"key":"2021110804534638900_sfaa259-B45","doi-asserted-by":"crossref","first-page":"377","DOI":"10.3348\/kjr.2009.10.4.377","article-title":"Cyst ablation using a mixture of N-butyl cyanoacrylate and iodized oil in patients with autosomal dominant polycystic kidney disease: the long-term results","volume":"10","author":"See","year":"2009","journal-title":"Korean J Radiol"},{"key":"2021110804534638900_sfaa259-B46","doi-asserted-by":"crossref","first-page":"2267","DOI":"10.1056\/NEJMoa1402686","article-title":"Angiotensin blockade in late autosomal dominant polycystic kidney disease","volume":"371","author":"Torres","year":"2014","journal-title":"N Engl J Med"},{"key":"2021110804534638900_sfaa259-B47","doi-asserted-by":"crossref","first-page":"2407","DOI":"10.1056\/NEJMoa1205511","article-title":"Tolvaptan in patients with autosomal dominant polycystic kidney disease","volume":"367","author":"Torres","year":"2012","journal-title":"N Engl J Med"},{"key":"2021110804534638900_sfaa259-B48","doi-asserted-by":"crossref","first-page":"2255","DOI":"10.1056\/NEJMoa1402685","article-title":"Blood pressure in early autosomal dominant polycystic kidney disease","volume":"371","author":"Schrier","year":"2014","journal-title":"N Engl J Med"}],"container-title":["Clinical Kidney Journal"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/academic.oup.com\/ckj\/advance-article-pdf\/doi\/10.1093\/ckj\/sfaa259\/36780879\/sfaa259.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/ckj\/article-pdf\/14\/11\/2338\/41100086\/sfaa259.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/ckj\/article-pdf\/14\/11\/2338\/41100086\/sfaa259.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,27]],"date-time":"2023-10-27T15:55:28Z","timestamp":1698422128000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/ckj\/article\/14\/11\/2338\/6130818"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,2,8]]},"references-count":48,"journal-issue":{"issue":"11","published-online":{"date-parts":[[2021,2,8]]},"published-print":{"date-parts":[[2021,11,8]]}},"URL":"https:\/\/doi.org\/10.1093\/ckj\/sfaa259","relation":{},"ISSN":["2048-8505","2048-8513"],"issn-type":[{"value":"2048-8505","type":"print"},{"value":"2048-8513","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2021,11]]},"published":{"date-parts":[[2021,2,8]]}}}