ArticlePatient preference and adherence2012
Psychometric properties of the Specific Thalassemia Quality of Life Instrument for adults.
Article in Patient preference and adherence, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
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Who cites it
16 citing papers in PubMed, 33 citations in OpenAlex.
- Trial
- Mental Resilience, Satisfaction from Life, and Quality of Life of People with Hemoglobinopathies : Quality of Life of People with Haemoglobinopathies.Advances in experimental medicine and biology · 2026Article
- Innovative Rapid Detection System for Nondeletion-Type α‑Thalassemia via Whole-Blood Amplification and Microfluidic Technology.ACS omega · 2025Article
- Article
- Effectiveness of educational intervention on quality of life in adults with thalassemia major: A quasi-experimental study based on PRECEDE model.Health science reports · 2024Article
- A Cross-Sectional, Multicentric, Disease-Specific, Health-Related Quality of Life Study in Greek Transfusion Dependent Thalassemia Patients.Healthcare (Basel, Switzerland) · 2024Article
- Systematic literature review of the indirect costs and humanistic burden of β-thalassemia.Therapeutic advances in hematology · 2024Review
- Development of the Thalassaemia Adult Life Index (ThALI).Health and quality of life outcomes · 2020Article
- Predictors of Quality of Life in Transfusion-dependent Thalassemia Patients Based on the PRECEDE Model: A Structural Equation Modeling Approach.Journal of epidemiology and global health · 2020Article
- Health state utilities associated with treatment for transfusion-dependent β-thalassemia.The European journal of health economics : HEPAC : health economics in prevention and care · 2020Article
- Development of a patient-reported outcomes symptom measure for patients with nontransfusion-dependent thalassemia (NTDT-PROAmerican journal of hematology · 2019Article
- Validation of a patient-reported outcomes symptom measure for patients with nontransfusion-dependent thalassemia (NTDT-PROAmerican journal of hematology · 2019Article
- Quality of life in Sardinian patients with transfusion-dependent Thalassemia: a cross-sectional study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2018Article
- Translation, Adaptation and Initial Validation of Food Allergy Quality of Life Questionnaire: Child form in Greek.Health psychology research · 2016Article
- Failure to replicate the internal structure of Greek-specific thalassemia quality of life instrument in adult thalassemia patients in Sabah.Patient preference and adherence · 2016Article
- Associations between a health-promoting lifestyle and quality of life among adults with beta-thalassemia major.Epidemiology and health · 2016Article
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundNo specific questionnaire has been developed to assess the health-related quality of life of thalassemia patients. Thus, the main objective of this study was to develop, according to psychometric standards, a self-administered Specific Thalassemia Quality of Life Instrument (STQOLI) for adult patients.
methodsFirst, a qualitative phase was conducted to generate items and identify domains using the critical analysis incident technique and a literature review. A list of easily comprehensible, non-redundant items was defined using the Delphi technique and a pilot study on ten thalassemia patients. This phase involved both patients and experts. The second step was a quantitative validation phase comprising a study of 128 thalassemia patients in a single hospital. It was designed to select items, identify dimensions, and measure reliability and internal and concurrent validity. The psychometric and scaling properties of the proposed 41-item Specific Thalassemia Quality of Life Instrument were then assessed among patients recruited from the Thalassemia Unit at the General Hospital of Nikaia, Greece.
resultsThe final questionnaire had 41 items comprising four main domains and one global item about general health. The factorial structure was satisfactory (loading > 0.40 on each factor of the four domains for all items). Interscale correlations ranged from 0.06 to 0.78, Cronbach's α-coefficients were 0.78 for the psychosocial domain, 0.77 for the chelation domain, 0.72 for the transfusion domain, 0.81 for the disease and symptoms domain, and 0.840 for the total score of the questionnaire.
conclusionThe 41-item Specific Thalassemia Quality of Life Instrument seems to be a valid tool for assessing health-related quality of life for patients with thalassemia. More research is needed to explore the universal properties of the questionnaire.
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