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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2020

Open Access 01-12-2020 | Thalassemia | Research

Development of the Thalassaemia Adult Life Index (ThALI)

Authors: Xenya Kantaris, Mark Shevlin, John Porter, Lynn Myers

Published in: Health and Quality of Life Outcomes | Issue 1/2020

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Abstract

Background

Beta Thalassaemia Major (βTM) is a chronic genetic illness whereby the challenges faced by patients exposes them to increased risk of psychosocial issues. Despite this, a disease-specific tool to measure the impact of this illness on adult patients has yet to be developed.

Methods

In collaboration with βTM 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 βTM in a cross-cultural patient group in England.The Thalassaemia Life Index (ThALI) was developed in two stages – item generation and pre-testing and item reduction – 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.

Results

The final version of the ThALI encompasses 35 statements and five sub-scales - general physical health, coping, body image, appearance and confidence, social relationships and autonomy. 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 = 0.87 for the overall scale; 0.83–0.94 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.

Conclusions

The ThALI covers the impact of βTM 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’s 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’ perspective to inform practice and/or to identify areas of concern.
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Metadata
Title
Development of the Thalassaemia Adult Life Index (ThALI)
Authors
Xenya Kantaris
Mark Shevlin
John Porter
Lynn Myers
Publication date
01-12-2020
Publisher
BioMed Central
Keyword
Thalassemia
Published in
Health and Quality of Life Outcomes / Issue 1/2020
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-020-01437-6

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