Dear Meaad Kadhum Hassan

The name is difficult so I do not know what you are called. Nevertheless our papers on children with haemophilia and leukemia might give you some ideas: School Absences and School Achievements in Children with Congenital Coagulation DisordersArticle

• Jun 1988
• Scandinavian Journal of Educational Research
• 📷s. Béatrice Marianne Ewalds-Kvist

School Absences, School Achievements and Personality Traits of the Haemophilic Child

Béatrice (Ewalds) Kvist, Mårten Kvist, Jukka Rajantie First Published June 1, 1990 Research Article https://doi.org/10.1177/140349489001800206

Thank you very much dear Dr. Béatrice.

The disease is uncommon, and now there is increasing interest and focus on this type of thalassemia. As you know assessing the health- related quality of life of patients with chronic diseases is an important tool to assess the impact of disease and its treatment on on these patients.

Regards

Here is a paper of interest for you I guess:

Health related quality of life in Malaysian children with thalassaemia

• Adriana Ismail,
• Michael J Campbell†,
• Hishamshah Mohd Ibrahim† and
• Georgina L Jones†

Health and Quality of Life Outcomes20064:39

https://doi.org/10.1186/1477-7525-4-39

The PedsQL 4.0 was administered to children receiving blood transfusions and treatments at Hospital Kuala Lumpur, Malaysia using PedsQL 4.0 generic Scale Score. Accordingly, the questionnaire was also administered to a control group of healthy school children. Socio-demographic data were also collected from patients and controls using an interview schedule designed for the study.

February 5, 2010 – A study published online by BioMed Central Blood Disorders investigates the quality of life (QOL) among children with thalassemia in Thailand.

Entitled “Factors affecting health-related quality of life in Thai children with tha

lassemia,” the cross-sectional study was conducted in three selected hospitals in Thailand over a six-month period in 2006. The study involved 315 patients between the ages of 5 and 18 and utilized the Thai version of the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scale and was designed to yield both a total score and two summary scores, one for Physical Health and one for Psychosocial Health.Thalassemia is recognized as an issue of concern in Thailand, with some estimates indicating that one-third of the population carries the trait for either alpha-thalassemia or beta-thalassemia. Of the 315 patients included in this study, 165 were classified as having e-beta thalassemia; 130 with hemoglobin H; and 15 with beta-thalassemia.

The latter paper I attached included 130 children with alpha thalassemia H

The mean of the total summary score was 76.67 (out of 100), with a standard deviation (SD) of 11.40. For the Physical Health Summary score, the mean was 78.24 (SD=14.77), and for the Psychosocial Health Summary score, the mean was 75.54 (SD=12.76). The mean for the school functioning subscale was lowest (67.89, SD=15.92).

The study found these factors affect QOL:

Age Age at onset of anemia and age at first transfusion Pre-transfusion hemoglobin level Receiving a blood transfusion during the previous three months Disease severity

Thank you very much. Both are helpful, but the Thai study included good number of patients

Regards

Good

It's very important question