{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,29]],"date-time":"2026-09-29T13:32:11Z","timestamp":1790688731816,"version":"4.1.0"},"reference-count":40,"publisher":"BMJ","issue":"3","funder":[{"name":"GBS-CIDP foundation international"},{"name":"Talecris Talents program"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["J Neurol Neurosurg Psychiatry"],"published-print":{"date-parts":[[2018,3]]},"abstract":"<jats:sec><jats:title>Background<\/jats:title><jats:p>No consensus exists which quality of life (QoL) measure should be used in patients with inflammatory neuropathies. Moreover, most QoL measures are ordinal-based scales with their known deficiencies.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives<\/jats:title><jats:p>To establish a new disease-specific interval-based QoL questionnaire in inflammatory neuropathies (IN-QoL) using the Rasch model and evaluate its scientific properties (validity, reliability and responsiveness).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>264 patients with inflammatory neuropathies completed six commonly used QoL questionnaires. The obtained data were stacked and subjected to Rasch analysis. Responsiveness was determined by using the concept of minimum clinically important differences related to varying individually obtained SEs (responsiveness definition: MCID-SE\u22651.96\u2009after 1-year follow-up compared with baseline).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The IN-QoL fulfilled all Rasch\u2019s model requirements with high internal reliability values (patient separation index of 0.94), except being multidimensional. Additional factor analysis resulted in two (functional and mental) subsets that were unidimensional on their own. The IN-QoL showed good correlation with the EuroQol-health quality visual analogue scale (EQ-VAS) (Spearman\u2019s rho 0.72). It demonstrated acceptable responsiveness in patients with Guillain-Barr\u00e9 syndrome (GBS) and chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), as did the EQ-VAS. In patients with monoclonal gammopathy-related neuropathy and multifocal motor neuropathy, hardly any changes were seen over time.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The IN-QoL questionnaire fulfils modern clinimetric requirements and correlates strongly with a patient\u2019s self-assessment of their own quality of health, while also showing responsiveness in patients with GBS and CIDP. We propose using the IN-QoL and the EQ-VAS for assessing the QoL of patients with inflammatory neuropathies in future studies.<\/jats:p><\/jats:sec>","DOI":"10.1136\/jnnp-2017-316634","type":"journal-article","created":{"date-parts":[[2017,10,7]],"date-time":"2017-10-07T00:50:17Z","timestamp":1507337417000},"page":"256-262","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":20,"title":["Quality of life in inflammatory neuropathies: the IN-QoL"],"prefix":"10.1136","volume":"89","author":[{"given":"Thomas H P","family":"Draak","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catharina G","family":"Faber","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingemar S J","family":"Merkies","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2017,10,6]]},"reference":[{"key":"2020050722291862000_89.3.256.1","doi-asserted-by":"publisher","DOI":"10.1017\/S0033291798006667"},{"key":"2020050722291862000_89.3.256.2","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-198108000-00001"},{"key":"2020050722291862000_89.3.256.3","doi-asserted-by":"publisher","DOI":"10.1016\/0168-8510(90)90421-9"},{"key":"2020050722291862000_89.3.256.4","doi-asserted-by":"publisher","DOI":"10.1136\/jech.34.4.281"},{"key":"2020050722291862000_89.3.256.5","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199401000-00004"},{"key":"2020050722291862000_89.3.256.6","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199303000-00006"},{"key":"2020050722291862000_89.3.256.7","doi-asserted-by":"crossref","first-page":"93","DOI":"10.1177\/154596830001400202","article-title":"Development of a health-related quality of life measure for peripheral neuropathy","volume":"14","author":"Vickrey","year":"2000","journal-title":"Neurorehabil Neural Repair"},{"key":"2020050722291862000_89.3.256.8","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199206000-00002"},{"key":"2020050722291862000_89.3.256.9","first-page":"308","article-title":"Ordinal scales and foundations of misinference","volume":"70","author":"Merbitz","year":"1989","journal-title":"Arch Phys Med Rehabil"},{"key":"2020050722291862000_89.3.256.10","first-page":"857","article-title":"Observations are always ordinal; measurements, however, must be interval","volume":"70","author":"Wright","year":"1989","journal-title":"Arch Phys Med Rehabil"},{"key":"2020050722291862000_89.3.256.11","doi-asserted-by":"publisher","DOI":"10.1016\/0895-4356(96)00016-9"},{"key":"2020050722291862000_89.3.256.12","doi-asserted-by":"publisher","DOI":"10.2340\/16501977-0938"},{"key":"2020050722291862000_89.3.256.13","doi-asserted-by":"publisher","DOI":"10.2337\/diacare.26.9.2549"},{"key":"2020050722291862000_89.3.256.14","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1111\/j.1529-8027.2010.00245.x","article-title":"European federation of neurological societies\/peripheral nerve society guideline on management of chronic inflammatory demyelinating polyradiculoneuropathy: report of a joint task force of the European federation of neurological societies and the peripheral nerve society-first revision","volume":"15","author":"Joint Task Force of the EFNS and the PNS","year":"2010","journal-title":"J Peripher Nerv Syst"},{"key":"2020050722291862000_89.3.256.15","doi-asserted-by":"publisher","DOI":"10.1111\/j.1529-8027.2010.00278.x"},{"key":"2020050722291862000_89.3.256.16","doi-asserted-by":"crossref","first-page":"133","DOI":"10.1159\/000052111","article-title":"Diagnostic and classification criteria for the Guillain-Barr\u00e9 syndrome","volume":"4552111","author":"Van der Mech\u00e9","year":"2001","journal-title":"Eur Neurol"},{"key":"2020050722291862000_89.3.256.17","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-1331.2006.01466.x"},{"key":"2020050722291862000_89.3.256.18","doi-asserted-by":"publisher","DOI":"10.1002\/art.23108"},{"key":"2020050722291862000_89.3.256.19","unstructured":"Andrich DSB , Rumm LG . 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