Assessing Quality of Life in Thalassemia Patients and their Caregivers in Larkana: A Cross-sectional Study

Ali Qudratullah Shah; Muhammad Ahsan Qureshi; Fatima Detho; Iqra Rano; Ambreena Khuharo; Mir Hassan Khoso

doi:10.70749/ijbr.v3i7.1766

Authors

Ali Qudratullah Shah MBBS Student, Chandka Medical College, Shaheed Mohtarma Benazir Bhutto Medical University (SMBBMU), Larkana, Sindh, Pakistan. https://orcid.org/0009-0001-0638-1014
Muhammad Ahsan Qureshi MBBS Student, Chandka Medical College, Shaheed Mohtarma Benazir Bhutto Medical University (SMBBMU), Larkana, Sindh, Pakistan.
Fatima Detho MBBS Student, Chandka Medical College, Shaheed Mohtarma Benazir Bhutto Medical University (SMBBMU), Larkana, Sindh, Pakistan.
Iqra Rano MBBS Student, Chandka Medical College, Shaheed Mohtarma Benazir Bhutto Medical University (SMBBMU), Larkana, Sindh, Pakistan.
Ambreena Khuharo MBBS Student, Chandka Medical College, Shaheed Mohtarma Benazir Bhutto Medical University (SMBBMU), Larkana, Sindh, Pakistan.
Mir Hassan Khoso Department of Biochemistry, Chandka Medical College, Shaheed Mohtarma Benazir Bhutto Medical University (SMBBMU), Larkana, Sindh, Pakistan.

DOI:

https://doi.org/10.70749/ijbr.v3i7.1766

Keywords:

Thalassemia, Quality of Life (QoL), Caregivers, Urban-Rural Disparities

Abstract

This study assesses the health-related quality of life (HRQoL) among transfusion-dependent thalassemia patients and their caregivers in Larkana, Sindh, Pakistan, a region with limited healthcare infrastructure. Conducted between December 2024 and May 2025 at the Fatimid Foundation Center, the cross-sectional study involved 57 patients aged 8 years and older and their primary caregivers. Using the validated TranQoL questionnaire, data were collected on physical health, emotional well-being, family support, and school functioning for patients, and additional domains like financial strain for caregivers. Results showed patients had a mean QoL Summary Score of 50.29 (SD=15.44), higher than caregivers’ 35.03 (SD=16.88), indicating a greater burden on caregivers, particularly in emotional and physical health domains. Urban children reported significantly better family health (mean=55.33) than rural children (mean=45.33, p=0.010), highlighting resource disparities. No significant gender differences were found in physical (t=-0.254, p=0.801) or emotional health (t=-0.936, p=0.882) for children. A positive correlation existed between children’s physical and emotional health (r=0.464, p<0.01). Caregivers’ low scores underscore chronic stress and potential depression, exacerbated by socio-economic challenges and caregiving demands. The study highlights the need for integrated interventions addressing medical, psychological, and social needs, particularly in under-resourced settings like Larkana. Limitations include a small sample size and lack of clinical indicators like hemoglobin levels. These findings contribute to understanding thalassemia’s multidimensional impact, advocating for targeted support to improve QoL for patients and caregivers.

Downloads

Download data is not yet available.

References

Etemad, K., Mohseni, P., Aghighi, M., Bahadorimonfared, A., Hantooshzadeh, R., Taherpour, N., Piri, N., Sotoodeh Ghorbani, S., Malek, F., Kheiry, F., Khodami, A., Valadbeigi, T., & Hajipour, M. (2021). Quality of Life and Related Factors in β-Thalassemia Patients. Hemoglobin, 45(4), 245–249.

https://doi.org/10.1080/03630269.2021.1965617

Zhai, L., Liu, Y., Huo, R., Pan, Z., Bin, J., Li, Z., Tang, Q., & Fan, J. (2021). Quality of Life in Patients with β-thalassemia Major: Short-term and Long-term Effects After Haematopoietic Stem Cell Transplantation. Current stem cell research & therapy, 16(8), 924–930.

https://doi.org/10.2174/1574888X16666210203105340

Kohlbry, P., Al-Karmi, B., & Yamashita, R. (2023). Quality-of-life of patients living with thalassaemia in the West Bank and Gaza. Eastern Mediterranean health journal = La revue de sante de la Mediterranee orientale = al-Majallah al-sihhiyah li-sharq al-mutawassit, 29(6), 425–435.

https://doi.org/10.26719/emhj.23.045

Arian, M., Mirmohammadkhani, M., Ghorbani, R., & Soleimani, M. (2019). Health-related quality of life (HRQoL) in beta-thalassemia major (β-TM) patients assessed by 36-item short form health survey (SF-36): a meta-analysis. Quality of life research: an international journal of quality of life aspects of treatment, care and rehabilitation, 28(2), 321–334.

https://doi.org/10.1007/s11136-018-1986-1

Khodashenas, M., Mardi, P., Taherzadeh-Ghahfarokhi, N., Tavakoli-Far, B., Jamee, M., & Ghodrati, N. (2021). Quality of Life and Related Paraclinical Factors in Iranian Patients with Transfusion-Dependent Thalassemia. Journal of environmental and public health, 2021, 2849163.

https://doi.org/10.1155/2021/2849163

Shah, R., & Badawy, S. M. (2024). Health-related quality of life with standard and curative therapies in thalassemia: A narrative literature review. Annals of the New York Academy of Sciences, 1532(1), 50–62.

https://doi.org/10.1111/nyas.15100

Töret, E., Karadaş, N. Ö., Gökçe, N. Ö., Kaygusuz, A., Karapınar, T. H., Oymak, Y., & Gözmen, S. (2018). Quality of Life and Depression in Turkish Patients with β-Thalassemia Major: A Cross-Sectional Study. Hemoglobin, 42(5-6), 326–329.

https://doi.org/10.1080/03630269.2018.1551231

Tuysuz, G., & Tayfun, F. (2017). Health-related Quality of Life and its Predictors Among Transfusion-dependent Thalassemia Patients. Journal of pediatric hematology/oncology, 39(5), 332–336.

https://doi.org/10.1097/MPH.0000000000000790

Maheri, M., Rohban, A., Sadeghi, R., & Joveini, H. (2020). 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, 10(2), 157–163.

https://doi.org/10.2991/jegh.k.191001.001

Soubrier, C., Jean, E., De Sainte Marie, B., Agouti, I., Seguier, J., Lavoipierre, V., Clapasson, C., Iline, N., Gonin, J., Giorgi, R., Schleinitz, N., Thuret, I., Badens, C., & Bernit, E. (2024). État de santé et qualité de vie des patients β-thalassémiques adultes à Marseille, France [Health status and quality of life in β-thalassemia adults in Marseille, France]. La Revue de medecine interne, 45(4), 187–193.

https://doi.org/10.1016/j.revmed.2024.01.005

Mikael, N. A., & Al-Allawi, N. A. (2018). Factors affecting quality of life in children and adolescents with thalassemia in Iraqi Kurdistan. Saudi medical journal, 39(8), 799–807.

https://doi.org/10.15537/smj.2018.8.23315

Floris, F., Comitini, F., Leoni, G., Moi, P., Morittu, M., Orecchia, V., Perra, M., Pilia, M. P., Zappu, A., Casini, M. R., & Origa, R. (2018). 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, 27(10), 2533–2539.

https://doi.org/10.1007/s11136-018-1911-7

Hameed, Z. M., Hassan, M. K., & Ahmed, B. A. (2024). Health-Related Quality of Life of Adolescents With Non-transfusion-Dependent Thalassemia in Basrah, Iraq. Cureus, 16(9), e70189.

https://doi.org/10.7759/cureus.70189

Boonchooduang, N., Louthrenoo, O., Choeyprasert, W., & Charoenkwan, P. (2015). Health-Related Quality of Life in Adolescents with Thalassemia. Pediatric hematology and oncology, 32(5), 341–348.

https://doi.org/10.3109/08880018.2015.1033795

Alzahrani, R. A., Almutairi, O. M., Alghoraibi, M. S., Alabdulwahed, M. S., Abaalkhail, M. K., Alhawish, M. K., & Alosaimy, M. T. (2017). Quality of life in transfusion-dependent thalassemia patients. Journal of Taibah University Medical Sciences, 12(5), 465–470.

https://doi.org/10.1016/j.jtumed.2017.05.006

Caocci, G., Mulas, O., Barella, S., Orecchia, V., Mola, B., Costa, A., Efficace, F., & La Nasa, G. (2023). Long-Term Health-Related Quality of Life and Clinical Outcomes in Patients with β-Thalassemia after Splenectomy. Journal of clinical medicine, 12(7), 2547.

https://doi.org/10.3390/jcm12072547

Hossain, M. J., Islam, M. W., Munni, U. R., Gulshan, R., Mukta, S. A., Miah, M. S., Sultana, S., Karmakar, M., Ferdous, J., & Islam, M. A. (2023). Health-related quality of life among thalassemia patients in Bangladesh using the SF-36 questionnaire. Scientific reports, 13(1), 7734.

https://doi.org/10.1038/s41598-023-34205-9

Adam S. (2019). Quality of life outcomes in thalassaemia patients in Saudi Arabia: a cross-sectional study. Eastern Mediterranean health journal = La revue de sante de la Mediterranee orientale = al-Majallah al-sihhiyah li-sharq al-mutawassit, 25(12), 887–895.

https://doi.org/10.26719/2019.25.12.887

Fianza, P. I., Rahmawati, A., Wijaya, I., Oehadian, A., Prasetya, D., Vidyaniati, P., Harti, G. F., Fadjari, T. H., & Panigoro, R. (2024). Gender Disparities in Psychological Disturbances and Quality of Life Among Adolescent and Adult Patients with Thalassemia: A Review. Journal of multidisciplinary healthcare, 17, 1663–1669.

https://doi.org/10.2147/JMDH.S444592

Mardhiyah, A., Panduragan, S. L., Mediani, H. S., & Yosep, I. (2024). Factors Associated With Quality of Life Among Adolescent With Beta Thalassemia in Indonesia: A Cross-Sectional Study. SAGE open nursing, 10, 23779608241255638.

https://doi.org/10.1177/23779608241255638

Permana, D. A., Susanah, S., Adrizain, R., Rahayuningsih, S. E., Dhamayanti, M., & Rakhmilla, L. E. (2024). Factors Related to the Quality of Life in Children with Transfusion-Dependent Thalassemia. Pediatric hematology and oncology, 41(3), 179–197.

https://doi.org/10.1080/08880018.2023.2286962

Adam, S., Afifi, H., Thomas, M., Magdy, P., & El-Kamah, G. (2017). Quality of Life Outcomes in a Pediatric Thalassemia Population in Egypt. Hemoglobin, 41(1), 16–20.

https://doi.org/10.1080/03630269.2017.1312434

Drahos, J., Boateng-Kuffour, A., Calvert, M., Levine, L., Dongha, N., Li, N., Pakbaz, Z., Shah, F., & Martin, A. P. (2024). Health-Related Quality-of-Life Impacts Associated with Transfusion-Dependent β-Thalassemia in the USA and UK: A Qualitative Assessment. The patient, 17(4), 421–439.

https://doi.org/10.1007/s40271-024-00678-7

Cappellini, M. D., Taher, A. T., Piga, A., Shah, F., Voskaridou, E., Viprakasit, V., Porter, J. B., Hermine, O., Neufeld, E. J., Thompson, A. A., Tang, D., Yucel, A., Lord-Bessen, J., Yu, P., Guo, S., Shetty, J. K., Miteva, D., Zinger, T., Backstrom, J. T., & Oliva, E. N. (2023). Health-related quality of life in patients with β-thalassemia: Data from the phase 3 BELIEVE trial of luspatercept. European journal of haematology, 111(1), 113–124.

https://doi.org/10.1111/ejh.13975

Klaassen, R. J., Barrowman, N., Merelles-Pulcini, M., Vichinsky, E. P., Sweeters, N., Kirby-Allen, M., Neufeld, E. J., Kwiatkowski, J. L., Wu, J., Vickars, L., Blanchette, V. S., Forgie, M., Yamashita, R., Wong-Rieger, D., & Young, N. L. (2014). Validation and reliability of a disease-specific quality of life measure (the TranQol) in adults and children with thalassaemia major. British journal of haematology, 164(3), 431–437.

https://doi.org/10.1111/bjh.12631

Naseem, C. (2025). Improvements in AI-powered remote patient monitoring for heart patients and AI-powered individualized treatment plans | The research of medical science review. The Research of Medical Science Review.

https://thermsr.com/index.php/Journal/article/view/813