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Generic QoL measures do not address disease-specific aspects such as spasticity, access to specialty HSP clinics, and bladder symptoms. We designed and validated a HSP-specific QoL scale (HSPQoL), intended for use in standard clinical settings and clinical trials. HSP-specific items were added to the RAND 36-Item Short Form Health Survey (SF-36) to form HSPQoL. Following literature review\/expert input, 23 items were presented to a panel of HSP clinicians, patients, and patient representatives (\n                    <jats:italic>n<\/jats:italic>\n                    \u2009=\u200912) using a modified Delphi process. Items were ranked for clarity and relevance (inclusion criteria: 80% consensus). 21\/23 items met the inclusion criteria.\u00a0Interviews with patients (\n                    <jats:italic>n<\/jats:italic>\n                    \u2009=\u20095) assessed suitability, comprehension, clarity, and response options to additional items.\u00a0Based on cognitive interview results, items were modified (\n                    <jats:italic>n<\/jats:italic>\n                    =4), removed (\n                    <jats:italic>n<\/jats:italic>\n                    =7), or added (\n                    <jats:italic>n<\/jats:italic>\n                    =3). Sixty-one patients completed the HSPQoL and EQ5D-5L for evaluation of construct validity and 19 patients repeated the HSPQoL for evaluation of\u00a0test\u2013retest reliability. 15\/17 additional items moderately to strongly correlated with pre-existing SF-36 subscores (Spearman correlation 0.319\u20130.771, p\u2009&lt;\u20090.05). Exploratory factor analyses showed high percentage of variance in the first component (&gt;\u200945%). HSPQoL demonstrated good internal consistency (Cronbach alpha 0.94), test\u2013retest reliability (ICC 0.957), and convergent validity with EQ5D-5L (r\u2009=\u20090.725). In conclusion, demonstrated validity and reliability of the HSPQoL confirms consideration of its use for assessing specific QoL in individuals with HSP.\n                  <\/jats:p>","DOI":"10.1007\/s12311-024-01771-1","type":"journal-article","created":{"date-parts":[[2024,12,16]],"date-time":"2024-12-16T19:12:57Z","timestamp":1734376377000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Designing and Validating a Hereditary Spastic Paraplegia-Specific Quality of Life Rating Scale (HSPQoL)"],"prefix":"10.1007","volume":"24","author":[{"given":"Sue Faye","family":"Siow","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane","family":"Fleming","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristine","family":"Barlow-Stewart","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gautam","family":"Wali","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kishore R.","family":"Kumar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolyn M.","family":"Sue","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,12,17]]},"reference":[{"key":"1771_CR1","doi-asserted-by":"publisher","unstructured":"Harding AE. 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