Psychosocial Assessment of Thalassemia Major Patients in Adolescent Age Group

INTRODUCTION- Thalassemia is a quantitative hemoglobin disorder ,autosomal recessive in nature characterised by decrease or absence of one or more globin chains ¹.ß- thalassemia major poses a significant health burden in India. The thalassemia carrier is 3-4% in our country ². Chronic illness frequently interferes with growth and development ,the expense of treatment, frequent hospital stays , iron chelation ,regular blood transfusion , undesirable body color ,regular check-ups , all contribute to concerns about physical, emotional, social, psychological burden on patient and family . It is necessary to evaluate the psychosocial effects of thalassemia to create informational guidelines for support and counseling programs to optimize coping with the disorder .Thalassemic patients and their families have experienced improved survival due to a high level of social integration, acceptance, and self-esteem, along with appropriate medical care and psychosocial support .

AIMS & OBJECTIVE:- To identify the psychosocial problems faced by adolescent thalassemia major patients And to know how there psychosocial life is affected , compaired with normal adolescent boys and girls.

METHODS & METHODOLOGY:-

Study Type- Observational Comparative Study.

Study Duration- 6 months(January. 2024-June.2024)

Study Place- Department of Clinical Hematology, SCBMCH

Department of Psychiatry , SCBMCH.

Inclusion Criteria-

Thalassemia major patients within age group 10-18 yrs who received regular blood transfusions.

Exclusion Criteria-

Patients with beta-Thalassemia who had any acute condition that made it difficult for them to respond to questionnaire such as heart failure were excluded.

Patients with thalassemia who had any associated chronic condition that was not related to thalassemia and its complications , were excluded from the study.

METHODOLOGY -

This is a case control study that was conducted on 44 adolescents with transfusion -dependent beta- thalassemia major and 44 healthy , age and gender matched adolescents after Institutional Ethical Clearance. The questions related to psychosocial burden of thalassemia eg . disease burden on their education ,time off school , outdoor - indoor games , social activities , government support, hindrance to get blood , peoples attitude ,fear of life were asked. Proper history taking ,anthropometric examination, tanners staging performed.

PSYCHOSOCIAL ASSESSMENT- Done by using Child Behavior Checklist (CBCL/6-18). It has 113 questions and is graded on a scale of 0 ( absent),1 ( occurs occasionally), 2( occurs frequently).

Statistical analysis was done by using SPSS software . The mean, SD or percentage are used to represent the parametric data.

Observation and Result

In our study only 16 (37%) cases had a history of illness in their family , the majority of cases

55% has one affected sibling.

Total 33(75%) have skin color changes.

Total 20 (44%) patients gives history of marriage within relatives.

There is significance difference in education status of mother between case and control.(p=0.01)

There was significance difference between the two groups regarding total problems grades that were clinical and borderline in cases more than in control group.(p=0.01)

Discussion-

Hongally et al. found 34% of children had clinical significant , abnormal CBCL internalization problem scores, and also showed abnormal CBCL externalization score in 30% of cases which also matches our study.

Eghabali et.al found no difference between cases and controls in rule- breaking bahaviour which also matches our side.

Conclusion

The study concluded that thalassemia major patients faced significant psychosocial burden in their life.

The finding suggested that psychosocial support as well as medical help should be provided to the thalassemia major patients to minimize their burden .

Social workers, Doctors, Nurses , Volunteres must provide psychosocial support to thalassemia major children and motivate their families.

Reference-

1.Cappellini MD, Cohen A, Eleftheriou A, Piga A, Porter J, Taher A. Guidelines for the Clinical Management of Thalassaemia [Internet]. 2nd Revised ed. Nicosia (CY): Thalassaemia International Federation; 2008. PMID: 24308075.

2.Madan N, Sharma S, Sood SK, Colah R, Bhatia LH. Frequency of β-thalassemia trait and other hemoglobinopathies in northern and western India. Indian J Hum Genet. 2010 Jan;16(1):16-25

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No relevant conflicts of interest to declare.