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Despite this, a disease-specific tool to measure the impact of this illness on adult patients has yet to be developed.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Methods<\/jats:title>\n<jats:p>In collaboration with \u03b2TM adult patients, this study aimed to develop a comprehensive, disease-specific, easy to use psychometrically sound tool to measure the impact of chelation and transfusion dependent \u03b2TM in a cross-cultural patient group in England.The Thalassaemia Life Index (ThALI) was developed in two stages \u2013 <jats:italic>item generation and pre-testing and item reduction<\/jats:italic> \u2013 in collaboration with service users. Recruited adult patients shaped the design of the instrument including its statements and subscales. Standard item reduction techniques were used to develop the instrument.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Results<\/jats:title>\n<jats:p>The final version of the ThALI encompasses 35 statements and five sub-scales - <jats:italic>general physical health, coping, body image, appearance and confidence, social relationships and autonomy<\/jats:italic>. This endorses the multidimensionality of quality of life (QoL). The factor structure of the ThALI is highly stable and its internal consistency is high (alpha\u2009=\u20090.87 for the overall scale; 0.83\u20130.94 for its subscales). The ThALI has sound scaling assumptions, acceptability and score variability. Content validity was confirmed by experts and service user interviewees. The loadings for the items retained were adequate and the item discriminant validity sound.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Conclusions<\/jats:title>\n<jats:p>The ThALI covers the impact of \u03b2TM in adult patients. Preliminary testing shows its multidimensionality to be reliable and valid. The national authentication of the tool with patients treated in Centres of Excellence will aim to provide further evidence regarding the ThALI\u2019s psychometric properties. Once authenticated, the ThALI may be utilised in research and in clinical settings to assess the effects of new therapies and\/or interventions from the patients\u2019 perspective to inform practice and\/or to identify areas of concern.<\/jats:p>\n<\/jats:sec>","DOI":"10.1186\/s12955-020-01437-6","type":"journal-article","created":{"date-parts":[[2020,6,12]],"date-time":"2020-06-12T07:02:43Z","timestamp":1591945363000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Development of the Thalassaemia Adult Life Index (ThALI)"],"prefix":"10.1186","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9391-4626","authenticated-orcid":false,"given":"Xenya","family":"Kantaris","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mark","family":"Shevlin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John","family":"Porter","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lynn","family":"Myers","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2020,6,12]]},"reference":[{"issue":"1","key":"1437_CR1","first-page":"8","volume":"3","author":"C Borgna-Pignatti","year":"2011","unstructured":"Borgna-Pignatti C, Bertelli S. 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The study was also registered with the relevant Research and Development Department for the NHS Trusts involved. The nature and objectives of the study were explained to all participants in an information sheet and informed written consent was obtained prior to data collection at both stages. The participants were assured of the confidentiality and anonymity of their responses and their right to withdraw from the project without penalty to their care and treatment.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors have no conflict of interests to declare.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"180"}}