{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,26]],"date-time":"2025-10-26T14:57:58Z","timestamp":1761490678775,"version":"3.40.5"},"reference-count":20,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2018,11,2]],"date-time":"2018-11-02T00:00:00Z","timestamp":1541116800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J of Clinical Apheresis"],"published-print":{"date-parts":[[2018,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Complex regional pain syndrome (CRPS) is a severe post\u2010traumatic chronic pain condition affecting distal limbs, for which few effective treatments exist. Complex regional pain syndrome is listed in the 2016 American Society for Apheresis guidelines as an indication for plasma exchange treatment, but patient perspectives are lacking.<\/jats:p><\/jats:sec><jats:sec><jats:title>Study design and methods<\/jats:title><jats:p>We convened a \u201cpatient and public consultation exercise.\u201d Supervised by a clinical ethicist, the case for using therapeutic plasma exchange (TPE) was presented by a researcher and two TPE experts to five patients with severe, long\u2010standing CRPS and to one relative. Discussions were recorded and transcribed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Participants supported the technology's use but expressed concern that the small trauma of repeat cannulations of CRPS unaffected limbs might theoretically cause a spread of the condition, a risk which requires highlighting when taking consent. For a preliminary trial, the participants proposed to include no less than 10, preferably 20 participants. They suggested that the threshold for a decision to conduct a definite trial based on preliminary trial results should be set no higher than 1\/5 patients achieving &gt;30% pain reduction in the preliminary trial, with half of these responders achieving &gt;50%. The use of sham\u2010TPE and a long trial duration (1 year) of a definite, parallel trial was considered acceptable, provided patients would be offered voluntary swap to the other trial arm at the end of the main trial period.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>These results provide pertinent patient views about TPE treatment which can inform both clinical consultation and consent procedure and the design of future trials.<\/jats:p><\/jats:sec>","DOI":"10.1002\/jca.21662","type":"journal-article","created":{"date-parts":[[2018,11,2]],"date-time":"2018-11-02T08:14:25Z","timestamp":1541146465000},"page":"661-665","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Patient consultation about a trial of therapeutic plasma exchange for complex regional pain syndrome"],"prefix":"10.1002","volume":"33","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3763-8206","authenticated-orcid":false,"given":"Andreas","family":"Goebel","sequence":"first","affiliation":[{"name":"Department of Translational Medicine, Faculty of Health and Life Sciences Pain Research Institute, University of Liverpool  Liverpool United Kingdom"},{"name":"Department of Pain Medicine, Walton Centre NHS Foundation Trust  Liverpool United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Therese","family":"Callaghan","sequence":"additional","affiliation":[{"name":"NHS Blood and Transplant  Liverpool United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sandra","family":"Jones","sequence":"additional","affiliation":[{"name":"NHS Blood and Transplant  Liverpool United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John","family":"Bridson","sequence":"additional","affiliation":[{"name":"Clinical Ethics Royal Liverpool and Broadgreen University Hospitals NHS Trust  Liverpool United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2018,11,2]]},"reference":[{"key":"e_1_2_6_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/jca.21470_c"},{"key":"e_1_2_6_3_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/ker202"},{"key":"e_1_2_6_4_1","doi-asserted-by":"publisher","DOI":"10.1212\/01.WNL.0000028686.74056.E3"},{"key":"e_1_2_6_5_1","doi-asserted-by":"publisher","DOI":"10.1097\/AJP.0b013e3181a11623"},{"volume-title":"Complex regional pain syndrome in adults (2nd edition). 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