EVALUATION OF GROSS MEDICAL CARE EXPENDITURE ENDURED BY PARENTS OF THALASSEMIA MAJOR PATIENTS

Authors

  • Muhammad Umair Provincial Health Directorate, Quetta, Pakistan
  • Rafiq Ahmed Shahid Department of Pathology, Sharif Medical and Dental College, Lahore, Pakistan
  • Amna Khalid Postgraduate Resident, Paediatrics Medicine, Children Hospital, Pakistan Institute of Medical Sciences, Islamabad, Pakistan
  • Asma Abdul Qadeer Department of Community Medicine, Rawal Institute of Health Sciences, Islamabad, Pakistan
  • Afsheen Mansoor School of Dentistry, Shaheed Zulfiqar Ali Bhutto Medical University, Islamabad, Pakistan
  • Sara Bashir Kant Department of Community Medicine, Azad Jammu and Kashmir Medical College, Muzaffarabad, Pakistan
  • Muhammad Athar Indus Hospital and Health Network, Islamabad, Pakistan

DOI:

https://doi.org/10.69656/pjp.v20i3.1693

Keywords:

Economic evaluation, Expenditure, Malnutrition, Parents, Thalassemia major

Abstract

Background:  Thalassemia major is a chronic problem and requires lifelong treatment that costs a lot to the parents directly or in directly. Objective of this study was to evaluate the gross medical care burden on the parents of thalassemia major patients visiting tertiary care hospitals for treatment. Methods: This cross-sectional research of six month duration (Jan-Jun 2024) was carried out in Quetta. Parents of malnourished thalassemia major patients admitted in paediatric wards were included whereas rest of the parents of thalassemia major patients with problems other than malnutrition were excluded. Systematic random sampling was used to gather data via preformed structured questionnaire. Ethical consideration was obtained from the parents and ERB of SOD before study. Descriptive statistics, i.e., frequencies and percentages were calculated and results were presented in the form of tabulation. Results: Among the 100 parents, more than half (65) were males and 35 were females. Majority (80%) parents had 1-5 siblings, 81% families had only a single earning member, 53% parents had 1 or 2 visits per month for blood transfusion. Ninety-seven percent and 89% parents respectively said that expenses on food and transport ranged from PKR 200-500. Conclusion: Parents spend about 300 rupees on food and about 300 rupees on travelling per visit so they had to spend about Rs. 1,200 (on an average) per month as most of them visit at least twice for the transfusion (some of them had to visit 3 times per month).

Pak J Physiol 2024;20(3):84-6, DOI: https://doi.org/10.69656/pjp.v20i3.1793

Downloads

Download data is not yet available.

References

Bajwa H, Basit H. Thalassemia. 2023 Aug 8. In: Treasure Island (FL): StatPearls Publishing; 2024.

WHO. Malnutrition. Available from https://www.who.int/news-room/questions-and-answers/item/malnutrition. [Accessed: 20 Apr 2024].

Lanigan J, Singhal A. Early nutrition and long-term health: a practical approach. Proc Nutr Soc 2009;68(4):422–9.

Fisher SA, Brunskill SJ, Doree C, Gooding S, Chowdhury O, Roberts DJ. Desferrioxamine mesylate for managing transfusional iron overload in people with transfusion?dependent thalassaemia. Cochrane Database of Syst Rev 2013(8):CD004450.

Colah R, Gorakshakar A, Nadkarni A. Global burden, distribution and prevention of ?-thalassemias and hemoglobin E disorders. Expert Rev Hematol 2010;3:103–17.

World Health Organization. Management of haemoglobin disorders: report of a joint WHO-TIF meeting, Nicosia, Cyprus, 16-18 November 2007. Geneva: World Health Organization; 2008. [Internet] Available from: http://apps.who.int/iris/bitstream/10665/ 43969/1/9789241597128_eng.pdf. [cited 2017 Dec 20].

Mohanty D, Colah RB, Gorakshakar AC, Patel RZ, Master DC, Mahanta J, et al. Prevalence of ?-thalassemia and other haemoglobinopathies in six cities in India: a multicentre study. J Community Genet 2013;4(1):33–42.

Majeed T, Akhter MA, Nayyar U, Riaz MS, Mannan J. Frequency of beta-thalassemia trait in families of thalassemia major patients, Lahore. J Ayub Med Coll Abbottabad 2013;25(3–4):4–6.

Ahmed MM, Salaria SM, Qamar S, Soaz MA, Bukhari MH, Qureshi AH. Incidence of ?-thalassemia carriers in Muzaffarabad, Azad Kashmir. Annals of Punjab Med Coll 2016;10(1):11–9.

Toulson Davisson Correia MI. Addressing the hidden burden of malnutrition for hospitalized patients. J Acad Nutr Diet 2018;118:37–9.

Mansoor A, Mansoor E, Sana A, Javaid MM, Khan AS, Hussain K. Physiological and socio-economic satisfaction level of patients for acrylic and cast alloy dentures. Pak J Physiol 2023;19(4):6–10.

Javaid MM, Tariq MA, Sajid M, Uraneb S, Zia Q, Umer MF, et al. Impact of socioeconomic status and duration of HIV/AIDS on scarcity of vitamin-D among HIV infected patients. Pak J Public Health 2023;13(2):84–7.

Esmaeilzadeh F, Azarkeivan A, Emamgholipour S, Sari AA, Yaseri M, Ahmadi B, et al. Economic burden of thalassemia major in Iran, 2015. J Res Health Sci 2016;16(3):111–5.

Muhammad L, Wajid KK, Afridi I, Ullah S, Khan A, Muhammad A. Awareness among educated and uneducated parents of Beta-thalassemia major patients about antenatal screening. Cureus 2022;14(8):e28561.

Miri-Moghaddam E, Naderi M, Izadi S, Mashhadi MA. Causes of new cases of major thalassemia in Sistan and Balouchistan province in South-East of Iran. Iran J Public Health 2012;41(11):67–71.

Mat MAC, Yaacob LH, Zakaria R. Parental knowledge on thalassaemia and factors associated with refusal to screen their children. Malays J Med Sci 2020;27(1):124–33.

Ali S, Mumtaz S, Shakir HA, Khan M, Tahir HM, Mumtaz S, et al. Current status of beta-thalassemia and its treatment strategies. Mol Genet Genomic Med 2021;9(12):e1788.

Iqbal R, Sidrah, Akhtar A, Memon K, Khan MR, Anique M, et al. Family screening of thalassemic patients and effectiveness of education in providing knowledge about prevention of thalassemia. Pak J Med Health Sci 2023;17(6):253–6.

Reed-Embleton H, Arambepola S, Dixon S, Maldonado BN, Premawardhena A, Arambepola M, et al. A cost-of-illness analysis of ?-Thalassaemia major in children in Sri Lanka —experience from a tertiary level teaching hospital. BMC Pediatr 2020;20(1):257.

Ishfaq K, Naeem SB, Ali J. Socio economic factors of thalassemia major on patients’ families: A case study of the Children’s Hospital and the Institute of Child Health Multan, Pakistan. Int J Med Appl Health 2013;1(1):5 Pages

Siddiqui MM, Rehman FU, Nazir IM, Khan MM, Zafar S, Ali Z, et al. Thalassemia major impact on patients’ families in Northern Punjab, Pakistan. Pak J Med Health Sci 2015;9(3):870–4.

Baqi A, Zia Q, Shaikh SP, Shoaib M, Javaid MM, Malik MS. Determinants of anxiety in amputees owed to traumatic & non-traumatic causes. Ann Pak Inst Med Sci 2022;18(3):175–80.

Downloads

Published

30-09-2024

How to Cite

1.
Umair M, Shahid RA, Khalid A, Qadeer AA, Mansoor A, Kant SB, et al. EVALUATION OF GROSS MEDICAL CARE EXPENDITURE ENDURED BY PARENTS OF THALASSEMIA MAJOR PATIENTS. Pak J Phsyiol [Internet]. 2024 Sep. 30 [cited 2024 Dec. 4];20(3):84-6. Available from: https://www.pjp.pps.org.pk/index.php/PJP/article/view/1693