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 Table of Contents  
Year : 2021  |  Volume : 12  |  Issue : 1  |  Page : 22-25

Caregivers' Perception of iron overload and its implications

1 Department of Hematology, King Abdulaziz University Hospital; Department of Oncology, King Faisal Specialist Hospital and Research Center, Jeddah, Saudi Arabia
2 Department of Hematology, King Abdulaziz University Hospital; Department of Oncology, King Faisal Specialist Hospital and Research Center, Jeddah; Hematology Research Unit, King Fahad Medical Research Center, King Abdulaziz University, Saudi Arabia

Date of Submission17-Aug-2020
Date of Decision17-Oct-2020
Date of Acceptance27-Oct-2020
Date of Web Publication15-Mar-2021

Correspondence Address:
Dr. Ali H Algiraigri
Department of Hematology, King Abdulaziz University Hospital, Jeddah 22252
Saudi Arabia
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/joah.joah_144_20

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BACKGROUND: Although frequently diagnosed in our region, transfusion-dependent thalassemia (TDT) often remains a poorly managed disease. This is due to a lack of awareness of the long-term effect of iron overload among thalassemic patients. This study aimed to examine the unmet needs of TDT patients and provide insight into achieving better care.
METHODS: We conducted a cross-sectional study of 50 caregivers of heavily transfused thalassemia and sickle cell anemia (SCA) patients. The participants were recruited during their visit to the pediatric hematology clinic or daycare unit between September 2018 and May 2019. The researchers administered a questionnaire to assess the awareness of iron overload and compliance with its management in TDT and SCA.
RESULTS: Most participant caregivers of children with TDT and SCA had a low level of awareness about the most critical complication of TDT and SCA, which is iron overload. Furthermore, two-thirds of the participants did not appreciate the seriousness of iron overload nor its potential complications. Moreover, the participants reported that their health-care providers rarely or occasionally discuss iron overload or its management. Furthermore, they reported that compliance with health-care appointments and iron chelation therapy was suboptimal.
CONCLUSION: Caregivers of TDT and SCA patients reported a low level of knowledge of the magnitude of iron overload, its management, and expected complications if not treated appropriately. Health education on iron overload is critical to ensure appropriate compliance and consequently, control of such disease. The focus must be shifted from giving blood to eliminating excess iron among TDT patients.

Keywords: Caregivers' perception, iron overload, thalassemia

How to cite this article:
Alqarni NS, Algiraigri AH. Caregivers' Perception of iron overload and its implications. J Appl Hematol 2021;12:22-5

How to cite this URL:
Alqarni NS, Algiraigri AH. Caregivers' Perception of iron overload and its implications. J Appl Hematol [serial online] 2021 [cited 2021 Sep 24];12:22-5. Available from: https://www.jahjournal.org/text.asp?2021/12/1/22/311334

  Introduction Top

To date, blood transfusion is the mainstay of care for patients with transfusion-dependent thalassemia (TDT) and other inherited anemia.[1],[2] However, once the transfusion protocol has been started, its related complications threaten patient safety and become a significant source of morbidity and mortality.[3] Multiple blood transfusions can lead to the accumulation of excessive iron in the body, a condition known as iron overload.[3] Approximately 1 ml of blood contains about 1 mg of iron; thus, for every 3–4 units of blood, 1 g of iron enters the body. The average adult with TDT requires at least a monthly transfusion, receiving 12–50 units of blood per year. This process is clinically relevant because iron overload increases quickly after repeated transfusions. More importantly, no physiologic means exist to remove excess iron from the body, ultimately allowing it to accumulate in tissues and disturb normal body organ functions.

Chelation therapy is one of the cornerstones in the management of thalassemic patients with iron overload. It is used to prevent or to treat iron overload by enhancing iron excretion. However, if a patient is not compliant with iron chelator(s), iron overload can result in multiple organ damage, such as liver failure, heart damage, endocrine failure, and early death.[4] Despite the availability of different iron chelation therapies, compliance with chelation drugs is often poor; therefore, problems of iron overload can persist and lead to severe problems.[4],[5]

Although health-care providers are aware of the significance of iron overload, the patients and their families may not necessarily understand this significance. As such, patients' perceptions and awareness of the magnitude of such a problem should be assessed and addressed. The results of this study may highlight the unmet gap in clinical practice in the management of iron overload and necessitate active and ongoing educational efforts about the leading cause of morbidity and mortality in heavily transfused patients.

  Methods Top

Study design and participants

A paper-based survey was given to care providers of TDT or any child with transfusion-dependent anemia (TDA) who received a regular blood transfusion. The participants were surveyed during their outpatient or daycare visits at King Abdulaziz University Hospital (KAUH) between September 2018 and May 2019. In addition, they were informed that their participation in the study was entirely voluntary, and refusal would not affect the care of their children.

Furthermore, parents were informed that no personally identifying information would be recorded at any point in the survey, and verbal informed consent was given by the parents before the study. The ethical committee at KAUH granted ethical approval for this research. The questionnaires included questions translated into the Arabic language.

Questionnaires and data analysis

The authors developed a survey consisting of 15 multiple-choice questions that assessed iron overload knowledge, monitoring, management, and complications. They also addressed patient compliance and their perceived perceptions of their health-care providers' knowledge of iron overload. Before distribution, the survey was reviewed and piloted on five parents to check the clarity and understandability of the questions. Feedback was integrated into the survey, and results were analyzed using Microsoft Excel. Percentages, frequencies, means, and ranges were calculated as needed. All submitted survey responses were incorporated into the analysis.

  Results Top

Sixty percent (30 of 50) of the respondents' caregivers were 30–39 years old, and 64% were non-Saudi mothers, as depicted in [Table 1]. Most respondents were able to understand or speak the Arabic language. Two-thirds (33 of 50) were college or university graduates, whereas 6% were illiterate. TDT represented the most common indication for blood transfusion in this cohort at 80% (40 of 50), followed by sickle cell anemia (SCA) at 20%. Sixty percent (30 of 50) of children had been regularly transfused with blood for 2 or more years.
Table 1: Caregivers' demographics

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As illustrated in [Table 2], 60% of caregivers said that they had very little or no knowledge about iron overload. Among caregivers surveyed, only 50% believed iron overload to be important or very important health issue. When asked about their knowledge of iron overload-related complications, only 40% were aware or fully aware of such complications. The vast majority of caregivers ranked iron overload as either not critical or less critical among the various thalassemic-related health issues.
Table 2: Questionnaires

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During their routine health-care visits, half of the caregivers said that their health-care providers rarely or occasionally talk about iron overload-related issues. Likewise, despite their children having received transfusions for years, most caregivers considered themselves not confident or less confident about how to monitor their children's iron overload conditions. In terms of compliance with health visits, 50% of respondents reported sometimes missing their appointments. Likewise, 70% of caregivers reported poor compliance with iron chelators, often missing doses of the drug. Eighty percent of caregivers either did not remember or were not sure about a critical indicator of iron overload, the ferritin level. Moreover, only 50% of caregivers were aware of alternative medicine to treat iron overload.

  Discussion Top

Our research provides insights into the educational needs of chronically transfused patients who suffer from iron overload. The results of this survey demonstrated that most caregivers of chronically transfused patients, such as those with TDT or SCA, have little knowledge of iron overload, which is considered the most severe complication that these patients face. Fewer than 50% of caregivers consider iron overload a critical health condition, and fewer than 40% of caregivers were aware of complications that may be caused by excess iron in the body.

The success of managing a complex health condition such as TDT depends on the active engagement of patients and their care providers in its management.[6],[7] Health-care providers should empower patients and their caregivers with fundamental knowledge and skills to manage their conditions. Prescribing the best medication does not fix the problem or change the attitude toward health-related conditions. Instead, the focus should be shifted toward improving health literacy through better communication and education.

As per the thalassemia guidelines, several parameters must be evaluated when dealing with heavily transfused children, such as growth parameters (weights and heights), hemoglobin (Hb) level, ferritin (a measure of the iron store), organ functions (endocrine, heart, and liver), and other health or disease parameters.[8] Moreover, active involvement and engagement of patients or caregivers should be included as key performance indicators. Patients' knowledge, skills, and attitudes should be actively monitored and assessed during their visits to ensure that they are entirely in charge of their health.

Patients and caregivers perceive thalassemia or other inherited anemia as a low Hb or anemia only, without considering other correlated conditions such as iron overload. Consequently, most patients and their families focus solely on correcting the Hb number without realizing the importance of ridding the body of excess iron. As mentioned earlier, each milliliter of transfused blood adds 1 mg of iron. Renaming some clinics as ”iron overload clinics” may increase the awareness of the problem. Furthermore, it may be wise to relabel thalassemia as ”thalassemia with iron overload” to enhance the patients' and their caregivers' understanding of the disease. In addition, a healthcare roadmap or action plan, which summarizes the main active issues as well as the most recent laboratory results and goals of care, is critical to ensuring comprehensive care as well as monitoring of complicated cases such as TDT. Graphic charts should be included to monitor iron overload (ferritin), increase the appreciation of the magnitude of the problem, and help guide the therapy. Patients may be able to better respond to such information and ultimately improve their adherence to and compliance with iron chelators.

Extra visits, in addition to blood transfusions every 2 or 4 weeks, present a significant burden on the patients and their families.[9] Instead, health education and monitoring of other aspects, such as iron overload, could be incorporated into the allocated transfusion sessions. Currently, several different iron chelators are available, and understanding the alternative options helps patients and families control the disease and utilize various lines of treatment. As indicated in our study, most caregivers were unaware of these alternatives.

Our study has several drawbacks, including a small survey sample size taken from a single healthcare center, which may reflect a center-specific practice rather than a general one. Furthermore, we did not obtain insights from the team of health professionals and other stakeholders who could have provided essential perspectives.

  Conclusion Top

Although chronic blood transfusion is an essential life-saving measure for thalassemia patients, it carries a substantial risk of iron overload if not managed promptly and appropriately. Our study identified a critical gap in perceived knowledge of and attitudes toward iron overload among thalassemic caregivers. This survey provides valuable information and insights into iron overload from the perspective of caregivers. It is time to empower the patients and their caregivers with essential yet comprehensive education to ensure their active engagement in the management of their diseases.

Financial support and sponsorship


Conflicts of interest

There are no conflicts of interest.

  References Top

Rachmilewitz EA, Giardina PJ. How I treat thalassemia. Blood 2011;118:3479-88.  Back to cited text no. 1
Liu C, Grossman BJ. Red blood cell transfusion for hematologic disorders. Hematol Am Soc Hematol Educ Program 2015;2015:454-61.  Back to cited text no. 2
Angelucci E, Barosi G, Camaschella C, Cappellini MD, Cazzola M, Galanello R, et al. Italian Society of Hematology practice guidelines for the management of iron overload in thalassemia major and related disorders. Haematologica 2008;93:741-52.  Back to cited text no. 3
Delea TE, Edelsberg J, Sofrygin O, Thomas SK, Baladi JF, Phatak PD, et al. Consequences and costs of noncompliance with iron chelation therapy in patients with transfusion-dependent thalassemia: A literature review. Transfusion 2007;47:1919-29.  Back to cited text no. 4
Musallam KM, Cappellini MD, Wood JC, Motta I, Graziadei G, Tamim H, et al. Elevated liver iron concentration is a marker of increased morbidity in patients with β thalassemia intermedia. Haematologica 2011;96:1605-12.  Back to cited text no. 5
Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA 2002;288:2469-75.  Back to cited text no. 6
Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: A review. Patient Educ Couns 2002;48:177-87.  Back to cited text no. 7
Porter J, Viprakasit V. Iron overload and chelation. In: Cappellini MD, Cohen A, Porter J, editors. Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT). 3rd ed., Ch. 3. Nicosia (CY): Thalassaemia International Federation; 2014. Available from: https://www.ncbi.nlm.nih.gov/books/NBK269373/. [Last accessed on 2020 Jan 01]  Back to cited text no. 8
France EF, Wyke S, Gunn JM, Mair FS, McLean G, Mercer SW. Multimorbidity in primary care: A systematic review of prospective cohort studies. Br J Gen Pract 2012;62:e297-307.  Back to cited text no. 9


  [Table 1], [Table 2]


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