Table 1.

Summary of the included studies focused on HRQOL in patients with thalassemia following HSCT

Author, yCountryAgeParticipantsSpecific diagnosisStudy type (time from HSCT)QOL toolConditioning regimenGRADE
Caocci et al,45  2006 Italy Median: 24 Range: 17-37 Patient: 19 Not reported Cross-Sectional (≥ 300 d post-HSCT) EORTC QLQ-C30 Myeloablative Moderate 
Caocci et al,44  2011 Italy Median: 10 Range: 5-17 Patient: 28 Parent: 28 β-thalassemia major Longitudinal (1-mo pre-HSCT, then 3, 6, and 18 mo post-HSCT) PedsQL 4.0 GCS Myeloablative Moderate 
Caocci et al,46  2016 Italy Mean: 33 Median: 21 Range: 12-29 Patient: 71 Control: 71 Not reported Cross-Sectional (median 21 y post-HSCT, range 12-29) SF-36 Not reported Moderate 
Cheuk et al,47  2008 Hong Kong Median: 15.2 Range: 5.3-30.4 Patients: 24 Control: 74 β-Thalassemia major, hemoglobin Bart's disease Cross-Sectional (median 6.5 y post-HSCT, range 1.1-13.5) WHOQoL-BREF(HK) and PedsQL Not reported Moderate 
Javanbakht et al,48  2015 Iran Mean: 20 Range: 5-35 Patients: 44 Control: 152 Not reported Cross-sectional (not reported) EQ-5D-3L, EQ-VAS, SF-36 Not reported Moderate 
Kelly et al,53  2012 USA Median: 8 Range: 5-18 Patients: 6 Parents: 6 Control: 268 Not reported Longitudinal (pre-HSCT, then 1.5, 3, 6, and 12 mo post-HSCT) CHRIs Myeloablative regimen mostly Moderate 
Kisecik Sengul et al,49  2017 Turkey Mean: 10.68 Range: 2-18 Parent: 26 Not reported Cross-sectional (not reported) PedsQoL Chemotherapy and chemoradiotherapy Moderate 
La Nasa et al,50  2013 Italy Median: 34 Range: 21-48 Patient: 109 Control: 124 β-thalassemia major Cross-Sectional (not reported) SF-36, FACT-BMT Myeloablative (busulfan, and cyclophosphamide) Moderate 
Patel et al,51  2018 India Median 10 Range: 5-18 Patients and parents: 40 Control: 60 Thalassemia major Cross-Sectional (median 5 y post-HSCT, range 2-10) PedsQL 4.0 GCS Myeloablative (fludarabine, thiotepa, treosulfan, and antithymocyte globulin) Low 
Uygun et al,52  2012 Turkey Median 11.6 Range: 3.5-25.7 Patients: 45 Parents: 40 Control: 50 Thalassemia major Cross-sectional (not reported) PedsQL 4.0, WHOQoL-BREF Myeloablative Moderate 
Author, yCountryAgeParticipantsSpecific diagnosisStudy type (time from HSCT)QOL toolConditioning regimenGRADE
Caocci et al,45  2006 Italy Median: 24 Range: 17-37 Patient: 19 Not reported Cross-Sectional (≥ 300 d post-HSCT) EORTC QLQ-C30 Myeloablative Moderate 
Caocci et al,44  2011 Italy Median: 10 Range: 5-17 Patient: 28 Parent: 28 β-thalassemia major Longitudinal (1-mo pre-HSCT, then 3, 6, and 18 mo post-HSCT) PedsQL 4.0 GCS Myeloablative Moderate 
Caocci et al,46  2016 Italy Mean: 33 Median: 21 Range: 12-29 Patient: 71 Control: 71 Not reported Cross-Sectional (median 21 y post-HSCT, range 12-29) SF-36 Not reported Moderate 
Cheuk et al,47  2008 Hong Kong Median: 15.2 Range: 5.3-30.4 Patients: 24 Control: 74 β-Thalassemia major, hemoglobin Bart's disease Cross-Sectional (median 6.5 y post-HSCT, range 1.1-13.5) WHOQoL-BREF(HK) and PedsQL Not reported Moderate 
Javanbakht et al,48  2015 Iran Mean: 20 Range: 5-35 Patients: 44 Control: 152 Not reported Cross-sectional (not reported) EQ-5D-3L, EQ-VAS, SF-36 Not reported Moderate 
Kelly et al,53  2012 USA Median: 8 Range: 5-18 Patients: 6 Parents: 6 Control: 268 Not reported Longitudinal (pre-HSCT, then 1.5, 3, 6, and 12 mo post-HSCT) CHRIs Myeloablative regimen mostly Moderate 
Kisecik Sengul et al,49  2017 Turkey Mean: 10.68 Range: 2-18 Parent: 26 Not reported Cross-sectional (not reported) PedsQoL Chemotherapy and chemoradiotherapy Moderate 
La Nasa et al,50  2013 Italy Median: 34 Range: 21-48 Patient: 109 Control: 124 β-thalassemia major Cross-Sectional (not reported) SF-36, FACT-BMT Myeloablative (busulfan, and cyclophosphamide) Moderate 
Patel et al,51  2018 India Median 10 Range: 5-18 Patients and parents: 40 Control: 60 Thalassemia major Cross-Sectional (median 5 y post-HSCT, range 2-10) PedsQL 4.0 GCS Myeloablative (fludarabine, thiotepa, treosulfan, and antithymocyte globulin) Low 
Uygun et al,52  2012 Turkey Median 11.6 Range: 3.5-25.7 Patients: 45 Parents: 40 Control: 50 Thalassemia major Cross-sectional (not reported) PedsQL 4.0, WHOQoL-BREF Myeloablative Moderate 

CHRIs, Child Health Rating Inventory; EORTC QLQ-C30, European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire 30-Items; EQ-5D-3L, EuroQol 5 dimensions 3-level; EQ-VAS, EuroQol visual analog scale; FACT-BMT, Functional Assessment of Cancer Therapy-Bone Marrow Transplant; WHOQoL-BREF, World Health Organization Quality of Life Instruments.

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