Psychosocial and academic impact of blood transfusion-dependent diseases on children
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Abstract
Introduction: Children with transfusion dependant diseases are confronted with multiple physical, psychosocial and cognitive obstacles, which touches significantly on their well-being and quality of life.
Aim:to assess the quality of life of children with transfusion-dependent diseases using the PedsQL 4.0 scale.
Method: This was a descriptive and a cross-sectional study conducted on children with chronic regular transfusion therapy in the paediatric department A of Hedi Chaker Hospital in Sfax, Tunisia between December 2024 and Mai 2025. We collected demographic informations about the children and their families and the clinical characteristics of the disease. The quality of life was assessed using the PedsQL 4.0 Generic score scales for children aged over 5 years old.
Results: Fifteen children requiring chronic transfusion therapy were included. Eleven families belonged to a low socio-economic class. The mean score of the children’s quality of life was 58.3%. The quality-of-life dimension with the highest score was the social function with a mean score of 67% while the dimension with the lowest score was the physical function with a mean score of 50.6%.
Conclusion: Transfusion dependant diseases have major negative impact on the daily lives of affected patients. Understanding the challenges faced by these children and their families is important to guide management decisions aimed not only at prolonging life, but also at improving their overall quality of life.
Keywords:
transfusion dependent diseases, child, quality of life, Ped sQL##plugins.themes.academic_pro.article.details##

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References
- Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001 Aug;39(8):800–12.
- Huang IC, Thompson LA, Chi YY, Knapp CA, Revicki DA, Seid M, et al. The Linkage between Pediatric Quality of Life and Health Conditions: Establishing Clinically Meaningful Cutoff Scores for the PedsQL. Value Health. 2009;12(5):773–81.
- Foster H, Polz P, Mair F, Gill J, O’Donnell CA. Understanding the influence of socioeconomic status on the association between combinations of lifestyle factors and adverse health outcomes: a systematic review protocol. BMJ Open. 2021 May 27;11(5):e042212.
- Didsbury MS, Kim S, Medway MM, Tong A, McTaggart SJ, Walker AM, et al. Socio-economic status and quality of life in children with chronic disease: A systematic review. J Paediatr Child Health. 2016 Dec;52(12):1062–9.
- Mikael NA, Al-Allawi NA. Factors affecting quality of life in children and adolescents with thalassemia in Iraqi Kurdistan. Saudi Med J. 2018 Aug;39(8):799–807.
- Rothman RL, Yin HS, Mulvaney S, Co JPT, Homer C, Lannon C. Health literacy and quality: focus on chronic illness care and patient safety. Pediatrics. 2009 Nov;124 Suppl 3:S315-326.
- Laghmich A, Alaoui Ismaili FZ, Zian Z, Barakat A, Ghailani Nourouti N, Bennani Mechita M. Hemoglobinopathies in the North of Morocco: Consanguinity Pilot Study. BioMed Res Int. 2019;2019(1):6857417.
- Mseddi S, Gargouri J, Labiadh Z, Kassis M, Elloumi M, Ghali L, et al. [Prevalence of hemoglobin abnormalities in Kebili (Tunisian South)]. Rev Epidemiol Sante Publique. 1999 Mar;47(1):29–36.
- Temaj G, Nuhii N, Sayer JA. The impact of consanguinity on human health and disease with an emphasis on rare diseases. J Rare Dis. 2022 Dec 7;1(1):2.
- Barouni M, Mellouli F, Bejaoui M, Abbes S. Influence des hémoglobinopathies sur l’aspect psychosocial des patients atteints: Cas de la Béta-Thalassémie majeure. Rev Marocaine Santé Publique [Internet]. 2018 Dec 18 [cited 2025 Jun 21];5(8). Available from: https://revues.imist.ma/index.php/RMSP/article/view/10213
- Needs T, Gonzalez-Mosquera LF, Lynch DT. Beta Thalassemia. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 [cited 2025 Jun 21]. Available from: http://www.ncbi.nlm.nih.gov/books/NBK531481/
- Tarım HŞ, Öz F. Thalassemia Major and Associated Psychosocial Problems: A Narrative Review. Iran J Public Health. 2022 Jan;51(1):12–8.
- Mettananda S, Pathiraja H, Peiris R, Bandara D, de Silva U, Mettananda C, et al. Health related quality of life among children with transfusion dependent β-thalassaemia major and haemoglobin E β-thalassaemia in Sri Lanka: a case control study. Health Qual Life Outcomes. 2019 Aug 8;17:137.
- Saliba AN, Harb AR, Taher AT. Iron chelation therapy in transfusion-dependent thalassemia patients: current strategies and future directions. J Blood Med. 2015 Jun 17;6:197–209.
- Gharaibeh HF, Gharaibeh MK. Factors influencing health-related quality of life of thalassaemic Jordanian children. Child Care Health Dev. 2012 Mar;38(2):211–8.
- Adam S, Afifi H, Thomas M, Magdy P, El-Kamah G. Quality of Life Outcomes in a Pediatric Thalassemia Population in Egypt. Hemoglobin. 2017 Jan;41(1):16–20.
- Ayoub MD, Radi SA, Azab AM, Abulaban AA, Balkhoyor AH, Bedair SW, et al. Quality of life among children with beta-thalassemia major treated in Western Saudi Arabia. Saudi Med J. 2013 Dec;34(12):1281–6.
- Boonchooduang N, Louthrenoo O, Choeyprasert W, Charoenkwan P. Health-Related Quality of Life in Adolescents with Thalassemia. Pediatr Hematol Oncol. 2015;32(5):341–8.
- Ismail A, Campbell MJ, Ibrahim HM, Jones GL. Health Related Quality of Life in Malaysian children with thalassaemia. Health Qual Life Outcomes. 2006 Jul 2;4:39.
- Sari TT, Rahmartani LD, Wirahmadi A, Selene NB, Iskandar SD, Wahidiyat PA. Psychological Burden among Pediatric Thalassemia Major Patients in Indonesia: A Review. Thalass Rep. 2024 Jun;14(2):33–43.
- Alsaad AJ. Psychosocial Aspects of Thalassemia and Patient’s Quality of Life: A Narrative Review. Majmaah J Health Sci. 2019 Sep 12;8(1):82–82.
- Elbahy S. Cognitive Function Assessment in Paediatric Patients with Beta-Thalassemia Major. Egypt J Hosp Med [Internet]. [cited 2025 Jun 21]; Available from: https://www.academia.edu/118303159/Cognitive_Function_Assessment_in_Paediatric_Patients_with_Beta_Thalassemia_Major