Awareness and practices regarding thalassemia among parents of transfusion dependent beta thalassemia patients registered with Hamza Foundation Peshawar, Pakistan
Keywords:
Hamza Foundation, Cross-sectional study, Thalassemia, beta-thalassemia, TransfusionAbstract
Thalassemia, a pervasive and chronic condition that impacts an estimated 200 million people worldwide, is predominantly caused by the beta-thalassemia gene, which is found in approximately 3% of the global population. The purpose of this research, which was carried out from June to December 2022 at the Haemophilia Hospital of the Hamza Foundation Welfare Thalassemia, was to evaluate the knowledge and behaviours of guardians of transfusion-dependent beta-thalassemia patients who were registered with the foundation. The findings of the research, which utilised non-probability convenience sampling to select 150 parents, indicated that 38.7% of the parents surveyed were cognisant of thalassemia, whereas permanent treatment was conspicuously unknown to them. Furthermore, it is noteworthy that a substantial proportion (94%) of parents readily shared food, underscoring the criticality of implementing educational and awareness campaigns targeting not only parents but the broader populace in order to rectify the lack of understanding regarding thalassemia. The fact that genetic counselling was availed of by a minuscule proportion (13.3%) of parents underscores a possible avenue for enhancement in comprehensive care approaches.
Downloads
References
Ahmed Naseem, Bilal Ahmed Khan, Syed Wasif Bukhari, Kiran Shafiq Khan, Tooba Sabir and MB %J Int J Curr Med Pharm Res Nazir "Knowledge, attitude and practices (KAP) of The families of B-thalassemia patients in a thalassemia Center of Karachi." 2020) 6: 4972-4976.
Ahmed Naseem, Bilal Ahmed Khan, Syed Wasif Bukhari, Kiran Shafiq Khan, Tooba Sabir and MB %J Int J Curr Med Pharm Res Nazir "Knowledge, attitude and practices (KAP) of The families of B-thalassemia patients in a thalassemia Center of Karachi." 2020) 6: 4972-4976.
Ali S, Saffiullah MFJKMUJ. Awareness of parents regarding beta thalassemia major disease. 2015;7(2):72-5.
Ali Saima and Malik F %J Khyber Med Univ J Saffiullah "Awareness of parents regarding beta thalassemia major disease." 2015) 72: 72-75.
Ali Saima and Malik F %J Khyber Med Univ J Saffiullah "Awareness of parents regarding beta thalassemia major disease." 2015) 72: 72-75.
Amooee Sedigheh, Alamtaj Samsami, Jamileh Jahanbakhsh and Mehran %J Iranian journal of reproductive medicine Karimi "The pregnancy outcome in patients with minor β-thalassemia." 2011) 91: 9.
Amooee Sedigheh, Alamtaj Samsami, Jamileh Jahanbakhsh and Mehran %J Iranian journal of reproductive medicine Karimi "The pregnancy outcome in patients with minor β-thalassemia." 2011) 91: 9.
Ansari Saqib Hussain, Tahir S Shamsi, Muneera Bohray, Mohammed Tahir Khan, Tasneem Farzana, Kousar Perveen and Sajida Erum (2011). Molecular epidemiology of β-thalassemia in Pakistan: far reaching implications, American Society of Hematology.
Ansari Saqib Hussain, Tahir S Shamsi, Muneera Bohray, Mohammed Tahir Khan, Tasneem Farzana, Kousar Perveen and Sajida Erum (2011). Molecular epidemiology of β-thalassemia in Pakistan: far reaching implications, American Society of Hematology.
Arif Fehmina, Jabeen Fayyaz and Ahmer %J J Pak Med Assoc Hamid "Awareness among parents of children with thalassemia major." 2008) 5811: 621-624.
Arif Fehmina, Jabeen Fayyaz and Ahmer %J J Pak Med Assoc Hamid "Awareness among parents of children with thalassemia major." 2008) 5811: 621-624.
Barua T, Barua D, Das D, Talukdar R, Sultana R, Arzu MACJCM-O-SHMCJ. Knowledge and Awareness of Parents Toward Thalassemia. 2021;20(1):12-5.
Barua Tanuka, Dazy Barua, Dhananjoy Das, Rupam Talukdar, Razia Sultana and Mahmood A Chowdhury %J Chattagram Maa-O-Shishu Hospital Medical College Journal Arzu "Knowledge and Awareness of Parents Toward Thalassemia." 2021) 201: 12-15.
Barua Tanuka, Dazy Barua, Dhananjoy Das, Rupam Talukdar, Razia Sultana and Mahmood A Chowdhury %J Chattagram Maa-O-Shishu Hospital Medical College Journal Arzu "Knowledge and Awareness of Parents Toward Thalassemia." 2021) 201: 12-15.
Basu Mausumi %J Journal of Preventive Medicine and Holistic Health "A study on knowledge, attitude and practice about thalassemia among general population in outpatient department at a Tertiary Care Hospital of Kolkata." 2015) 11: 6-13.
Basu Mausumi %J Journal of Preventive Medicine and Holistic Health "A study on knowledge, attitude and practice about thalassemia among general population in outpatient department at a Tertiary Care Hospital of Kolkata." 2015) 11: 6-13.
Danjou F, Anni F, Galanello RJh. Beta-thalassemia: from genotype to phenotype. 2011;96(11):1573.
Danjou Fabrice, Franco Anni and Renzo %J haematologica Galanello "Beta-thalassemia: from genotype to phenotype." 2011) 9611: 1573.
Danjou Fabrice, Franco Anni and Renzo %J haematologica Galanello "Beta-thalassemia: from genotype to phenotype." 2011) 9611: 1573.
Galanello R, Origa RJOjord. Beta-thalassemia. 2010;5(1):1-15.
Galanello Renzo and Raffaella %J Orphanet journal of rare diseases Origa "Beta-thalassemia." 2010) 51: 1-15.
Galanello Renzo and Raffaella %J Orphanet journal of rare diseases Origa "Beta-thalassemia." 2010) 51: 1-15.
Ghafoor MB, Leghari MS, Mustafa G, Naveed SJJoRMC. Level of awareness about thalassemia among parents of thalassaemic children. 2016;20(3).
Ghafoor Muhammad Bilal, Muhammad Saleem Leghari, Ghulam Mustafa and Shazia %J Journal of Rawalpindi Medical College Naveed "Level of awareness about thalassemia among parents of thalassaemic children." 2016) 203.
Ghafoor Muhammad Bilal, Muhammad Saleem Leghari, Ghulam Mustafa and Shazia %J Journal of Rawalpindi Medical College Naveed "Level of awareness about thalassemia among parents of thalassaemic children." 2016) 203.
Ishaq F, Hasnain Abid F, Akhtar A, Mahmood SJJotCoP, Pakistan S. Awareness among parents of ββ-Thalassemia major patients, regarding prenatal diagnosis and premarital screening. 2012;22(4):218-21.
Ishaq Fouzia, FK Hasnain Abid, A Akhtar, S %J Journal of the College of Physicians Mahmood and Surgeons Pakistan "Awareness among parents of ββ-Thalassemia major patients, regarding prenatal diagnosis and premarital screening." 2012) 224: 218-221.
Ishaq Fouzia, FK Hasnain Abid, A Akhtar, S %J Journal of the College of Physicians Mahmood and Surgeons Pakistan "Awareness among parents of ββ-Thalassemia major patients, regarding prenatal diagnosis and premarital screening." 2012) 224: 218-221.
Kalra Riya Kaur, Dania Kaur, Manmeet Sodhi and Jasleen %J Int. J. Contemp. Pediatrics Kaur "Knowledge, attitude and practice in parents of chronically transfused thalassemic patients regarding thalassemia in thalassemia day care unit in government medical college, Amritsar, Punjab, India." 2019) 66: 2469-2475.
Kalra Riya Kaur, Dania Kaur, Manmeet Sodhi and Jasleen %J Int. J. Contemp. Pediatrics Kaur "Knowledge, attitude and practice in parents of chronically transfused thalassemic patients regarding thalassemia in thalassemia day care unit in government medical college, Amritsar, Punjab, India." 2019) 66: 2469-2475.
Kalra RK, Kaur D, Sodhi M, Kaur JJIJCP. Knowledge, attitude and practice in parents of chronically transfused thalassemic patients regarding thalassemia in thalassemia day care unit in government medical college, Amritsar, Punjab, India. 2019;6(6):2469-75.
Maheen H, Malik F, Siddique B, Qidwai AJJogc. Assessing parental knowledge about thalassemia in a thalassemia center of Karachi, Pakistan. 2015;24(6):945-51.
Maheen Humaira, Farrukh Malik, Barera Siddique and Asim %J Journal of genetic counseling Qidwai "Assessing parental knowledge about thalassemia in a thalassemia center of Karachi, Pakistan." 2015) 246: 945-951.
Maheen Humaira, Farrukh Malik, Barera Siddique and Asim %J Journal of genetic counseling Qidwai "Assessing parental knowledge about thalassemia in a thalassemia center of Karachi, Pakistan." 2015) 246: 945-951.
Majeed Tazeen, Mohammed Adil Akhter, Ujala Nayyar, Muhammad Safwan Riaz and Jovaria %J Journal of Ayub Medical College Abbottabad Mannan "Frequency of β-thalassemia trait in families of thalassemia major patients, Lahore." 2013) 253-4: 58-60.
Majeed Tazeen, Mohammed Adil Akhter, Ujala Nayyar, Muhammad Safwan Riaz and Jovaria %J Journal of Ayub Medical College Abbottabad Mannan "Frequency of β-thalassemia trait in families of thalassemia major patients, Lahore." 2013) 253-4: 58-60.
Manzoor Iram and Rubeena %J Pakistan Journal of Medical Sciences Zakar "Sociodemographic determinants associated with parental knowledge of screening services for thalassemia major in Lahore." 2019) 352: 483.
Manzoor Iram and Rubeena %J Pakistan Journal of Medical Sciences Zakar "Sociodemographic determinants associated with parental knowledge of screening services for thalassemia major in Lahore." 2019) 352: 483.
Mardhiyah Ai and Aat %J Journal of Nursing Care Sriati "Preventing Thalasemia: Parents’ Awareness of Thalassemia." 2018) 12.
Mardhiyah Ai and Aat %J Journal of Nursing Care Sriati "Preventing Thalasemia: Parents’ Awareness of Thalassemia." 2018) 12.
Mishra AK, Tiwari AJM. Iron overload in beta thalassaemia major and intermedia patients. 2013;8(4):328.
Mishra Amit Kumar and Archana %J Maedica Tiwari "Iron overload in beta thalassaemia major and intermedia patients." 2013) 84: 328.
Mishra Amit Kumar and Archana %J Maedica Tiwari "Iron overload in beta thalassaemia major and intermedia patients." 2013) 84: 328.
Patterson S, Singleton A, Branscomb J, Nsonwu V, Spratling RJFim. Transfusion Complications in Thalassemia: Patient Knowledge and Perspectives. 2022;9:772886.
Patterson Sashoy, Ashley Singleton, Jane Branscomb, Vivien Nsonwu and Regena %J Frontiers in medicine Spratling "Transfusion Complications in Thalassemia: Patient Knowledge and Perspectives." 2022) 9: 772886.
Pinto Valeria Maria and Gian Luca %J International Journal of Molecular Sciences Forni "Management of iron overload in beta-thalassemia patients: clinical practice update based on case series." 2020) 2122: 8771.
Pinto Valeria Maria and Gian Luca %J International Journal of Molecular Sciences Forni "Management of iron overload in beta-thalassemia patients: clinical practice update based on case series." 2020) 2122: 8771.
Pinto VM, Forni GLJIJoMS. Management of iron overload in beta-thalassemia patients: clinical practice update based on case series. 2020;21(22):8771.
Prabhu R, Prabhu V, Prabhu RJJBT. Iron overload in beta thalassemia: a review. 2009;1(1):20-31.
Prabhu Raghuveer, Vidya Prabhu and RS %J J Biosci Tech Prabhu "Iron overload in beta thalassemia: a review." 2009) 11: 20-31.
Prabhu Raghuveer, Vidya Prabhu and RS %J J Biosci Tech Prabhu "Iron overload in beta thalassemia: a review." 2009) 11: 20-31.
Rajaeefard Abdolreza, Mahmoud Hajipour, Hamid Reza Tabatabaee, Jafar Hassanzadeh, Shahab Rezaeian, Zahra Moradi, Mehdi Sharafi, Mohsen Shafiee, Ali Semati, Sanaz %J Epidemiology Safaei and health "Analysis of survival data in thalassemia patients in Shiraz, Iran." 2015) 37.
Rajaeefard Abdolreza, Mahmoud Hajipour, Hamid Reza Tabatabaee, Jafar Hassanzadeh, Shahab Rezaeian, Zahra Moradi, Mehdi Sharafi, Mohsen Shafiee, Ali Semati, Sanaz %J Epidemiology Safaei and health "Analysis of survival data in thalassemia patients in Shiraz, Iran." 2015) 37.
Saxena Amit, Mumtaz Sharif, Sadaf Siddiqui and Swati %J Int J Contemp Pediatr Singh "Knowledge, practice and experiences of parents with a thalassemic child." 2017) 45: 1630-1633.
Saxena Amit, Mumtaz Sharif, Sadaf Siddiqui and Swati %J Int J Contemp Pediatr Singh "Knowledge, practice and experiences of parents with a thalassemic child." 2017) 45: 1630-1633.
Singh Rajnish Kumar, Nutan Kumari Jha, Inusha Panigrahi and Anil Kishore Sinha "Awareness about Thalassemia and Its Management Among the Caregivers of the Thalassemia Patients of Punjab and Chandigarh, India."
Singh Rajnish Kumar, Nutan Kumari Jha, Inusha Panigrahi and Anil Kishore Sinha "Awareness about Thalassemia and Its Management Among the Caregivers of the Thalassemia Patients of Punjab and Chandigarh, India."
Singh RK, Jha NK, Panigrahi I, Sinha AK. Awareness about Thalassemia and Its Management Among the Caregivers of the Thalassemia Patients of Punjab and Chandigarh, India.
Suriapperuma T, Peiris R, Mettananda C, Premawardhena A, Mettananda SJBrn. Body iron status of children and adolescents with transfusion dependent β-thalassaemia: trends of serum ferritin and associations of optimal body iron control. 2018;11(1):1-6.
Suriapperuma Tharindi, Ravindu Peiris, Chamila Mettananda, Anuja Premawardhena and Sachith %J BMC research notes Mettananda "Body iron status of children and adolescents with transfusion dependent β-thalassaemia: trends of serum ferritin and associations of optimal body iron control." 2018) 111: 1-6.
Suriapperuma Tharindi, Ravindu Peiris, Chamila Mettananda, Anuja Premawardhena and Sachith %J BMC research notes Mettananda "Body iron status of children and adolescents with transfusion dependent β-thalassaemia: trends of serum ferritin and associations of optimal body iron control." 2018) 111: 1-6.
Taher Ali T, Rayan Bou-Fakhredin, Antonis Kattamis, Vip Viprakasit and Maria Domenica %J Expert Review of Hematology Cappellini "Improving outcomes and quality of life for patients with transfusion-dependent β-thalassemia: recommendations for best clinical practice and the use of novel treatment strategies." 2021) 1410: 897-909.
Taher Ali T, Rayan Bou-Fakhredin, Antonis Kattamis, Vip Viprakasit and Maria Domenica %J Expert Review of Hematology Cappellini "Improving outcomes and quality of life for patients with transfusion-dependent β-thalassemia: recommendations for best clinical practice and the use of novel treatment strategies." 2021) 1410: 897-909.
Taher AT, Bou-Fakhredin R, Kattamis A, Viprakasit V, Cappellini MDJERoH. Improving outcomes and quality of life for patients with transfusion-dependent β-thalassemia: recommendations for best clinical practice and the use of novel treatment strategies. 2021;14(10):897-909.
Wong Li Ping, Elizabeth George and Jin-Ai Mary Anne %J BMC Public Health Tan "Public perceptions and attitudes toward thalassaemia: Influencing factors in a multi-racial population." 2011) 111: 1-9.
Wong Li Ping, Elizabeth George and Jin-Ai Mary Anne %J BMC Public Health Tan "Public perceptions and attitudes toward thalassaemia: Influencing factors in a multi-racial population." 2011) 111: 1-9.
Wong LP, George E, Tan J-AMAJBPH. Public perceptions and attitudes toward thalassaemia: Influencing factors in a multi-racial population. 2011;11(1):1-9.
Published
How to Cite
Issue
Section
Copyright (c) 2024 International journal of health sciences
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Articles published in the International Journal of Health Sciences (IJHS) are available under Creative Commons Attribution Non-Commercial No Derivatives Licence (CC BY-NC-ND 4.0). Authors retain copyright in their work and grant IJHS right of first publication under CC BY-NC-ND 4.0. Users have the right to read, download, copy, distribute, print, search, or link to the full texts of articles in this journal, and to use them for any other lawful purpose.
Articles published in IJHS can be copied, communicated and shared in their published form for non-commercial purposes provided full attribution is given to the author and the journal. Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgment of its initial publication in this journal.
This copyright notice applies to articles published in IJHS volumes 4 onwards. Please read about the copyright notices for previous volumes under Journal History.
