RELATIONSHIP BETWEEN FAMILY KNOWLEDGE ABOUT IRON CHELATION AND ADHERENCE TO GIVING IRON CHELATION IN
CHILDREN WITH THALASSEMIA AT RSCM KIARA
1Agung Setiyadi, 2Intan Parulian, 3Muhammad Ulfan
1-3Nursing Study Program, Faculty of Nursing & Midwifery, Binawan University Dewi Sartika St., Kalibata Raya, East Jakarta, 130630
E-mail: [email protected]
ABSTRACT
Based on a preliminary study by conducting interviews with 10 families of thalassemia patients at RSCM Kiara. It was found that only 40 % were obedient in giving iron chelation to thalassemia patients. This study aimed to find the relationship between family knowledge about iron chelation and adherence to consuming iron chelation in children with thalassemia. The method used in this study was a descriptive non-experimental method with a cross-sectional approach. Data analysis techniques in this activity are presented as descriptive and bivariate analysis using Spearman's rho statistical test with = 0.05. It measures the level of adherence to taking medication using the Morisky Medication Adherence Scale (MMAS-8) questionnaire. Based on the results of measuring respondents' knowledge level, 85.5% of respondents have a good level of knowledge 14.5% of respondents have a sufficient level of knowledge.
Measuring the level of adherence to medication, 22.9% of respondents have high adherence to drug consumption, 42.2% of respondents have a moderate level of adherence to drug consumption, and 34.9% have a low adherence to drug consumption. There is significant relationship between the knowledge level about iron chelation and adherence to giving iron chelation (p-value 0.006 <0.05 and r-value of 0.30). But the relationship is low, so knowledge about iron chelation alone is not enough to make adherence to giving iron chelation in children with high adherence results.
Keywords: Knowledge of iron chelation, adherence to giving iron chelation, thalassemia.
INTRODUCTION
One of the chronic diseases that often occur in children in Indonesia is thalassemia. Thalassemia is a chronic disease inherited in an autosomal recessive manner from parents to their children caused by a deficiency in polypeptide chain synthesis that affects bone marrow production of hemoglobin with clinical manifestations of severe anemia (Dahnil et al., 2017). In 2008 ,the world health organization (WHO) reported that at least 5.2% of the world's population were carriers of thalassemia, and an estimated 1.1% of couples worldwide were at high risk of having a child with hemoglobin health problems, and this happened every 2.7 per 1000 births/pregnancy.
The results of the Basic Health Research (Badan Penelitian Dan Pengembangan Kesehatan, 2013) show that the national prevalence of thalassemia is 0.1%. Some of the 8 provinces showing thalassemia incidence are higher than the national prevalence, namely Aceh, 13.4%, Jakarta, 12.3%, South Sumatra, 5.4%, Gorontalo, 3.1%, and Riau Islands, 3%. Every year, 300 thousand children with thalassemia will be born, and about 60-70 thousand are the type of thalassemia major.
Dr. Cipto Mangunkusumo National Central Public Hospital or often abbreviated as RSCM, is one of the hospitals that provide services to thalassemia patients. The Kiara Building is outpatient every
patients. In addition to receiving blood transfusions, patients with thalassemia children receive iron chelation therapy according to the patient's needs (RSCM Medical Record).
The patients with thalassemia, hemoglobin undergoes destruction (hemolysis) due to impaired globin chain synthesis. Patients with thalassemia must undergo blood transfusions to live a normal life.
In addition, iron chelating agents are also needed, which are expensive to remove excess iron in the body due to blood transfusions. If this action is not taken, iron will accumulate in various vital tissues and organs such as the heart, brain, liver, and kidneys which is the cause of complications of premature death (Arifna, 2017).
The success of carrying out treatment is not only determined by the diagnosis and selection of the right drug but also adherence in carrying out treatment is one factor that is no less important. The management pillar begins with a non-pharmacological approach: providing education, planning/medical nutrition therapy, and physical activities. Family participation is also needed as a motivation for patients.
Adherence is the main key in carrying out routine transfusions in thalassemia patients to maintain the immune system of children with thalassemia. Several efforts have been made, such as providing counseling to parents who have thalassemia children to be obedient in bringing their children to be given therapy, but there are still parents who do not understand and realize the importance of the treatment so that their visits are not on schedule (Rahayu, 2016).
Many factors trigger the lack of adherence to therapy in thalassemia children, such as family support, economics, education, accommodation, and environmental and social factors. Of these several factors, family support is the most important factor and greatly affects the adherence to therapy in thalassemia children, which includes informational support, emotional support, instrumental support, and assessment support. At this time, health workers, especially nurses, have a special role and function in assisting families as family advocates. Nurses must work with family members to identify goals and needs and plan interventions for problems in caring for children with thalassemia. Providing health education and prevention is also a function of nurses that cannot be separated from their role as family advocates (Rahayu, 2016).
Based on the results of a preliminary study by conducting interviews with 10 families of thalassemia patients at RSCM Kiara. Three families said that in the last 1 month, they did not give the iron chelation to their children because their children were crying. Two of the patient's families said they had forgotten to provide due to traveling out of town. One patient's family said they did not provide iron chelation because their child was sick. And four of the patient's families said they regularly drank iron chelate. It was found that only 40% were obedient in giving iron chelation to thalassemia children.
The authors were interested in researching the "Relationship between the level of knowledge about iron chelation with adherence to giving iron chelation in children with thalassemia at RSCM Kiara."
METHODS
The method used in this research is a descriptive non-experimental method with a cross- sectional approach. The population in this study was 291 parents of thalassemia patients at RSCM Kiara from September to December 2021. The number of samples in this study was determined using the formula from Nursalam, namely 75 respondents, to avoid sample dropout, it is necessary to reserve a sample of 10%, namely 8 So the number of research samples is 83 people. Sampling uses the purposive sampling technique, which is a sample placement technique by selecting a sample among the population as desired by the researcher so that the sample can represent previously known population characteristics (Nursalam, 2013). The place where the research was carried out at RSCM Kiara from September to December 2021.
This study uses 2 kinds of instruments, namely the instrument of knowledge level about iron chelation and the instrument of adherence to the administration of iron chelation. The instrument's level of knowledge was measured using 11 questions with 2 answer choices, "Yes" and "No." Meanwhile, the adherence instrument was measured using 8 questions with 2 answer choices, "Yes" and "No." The method of data collection is by giving questionnaires using google forms. Researchers always accompanied respondents to reduce questionnaires' misperceptions.
Data analysis techniques in this activity are presented in the form of descriptive analysis and bivariate analysis. The relationship between family knowledge about iron chelation and adherence to giving iron chelation using Spearman's rho statistical test with = 0.05. Measuring the level of adherence to taking medication using the Morisky Medication Adherence Scale (MMAS-8) questionnaire.
RESULTS AND DISCUSSION
Univariate analysis in this study was conducted to determine the frequency distribution of family knowledge about iron chelation with adherence to consuming iron chelation in children with thalassemia at RSCM Kiara.
Table 1. Distribution of Family Knowledge about Iron Chelation in 2022 (N=83)
Knowledge Frequency Percentage (%)
Good 71 85.5
Enough 12 14.5
Total 83 100.0
Based on Table 4.1, it can be seen that most families have a good level of knowledge with a percentage of 85.5%, and the rest is sufficient at 14.5%. Knowledge is a result that occurs after someone has sensed a certain object from experience gained. A person's behavior based on knowledge will be of higher quality than behavior not based on knowledge (Notoatmodjo, 2012). Factors that influence knowledge are internal factors (such as education, occupation, and age) and external factors (such as environmental, socio-cultural-economic factors).
Vivienka's research (2020) shows that family knowledge is affected before and after being given basic information about thalassemia. The majority of family knowledge, which initially had a moderate level of knowledge, became a good majority, 63.1%. The results of this study align with the research of Marnis et al. (2018), which says that most family knowledge has a high level of knowledge with a percentage of 63.4%. The high level of family knowledge about iron chelation in children with thalassemia is related to the information that has been conveyed by nurses, doctors, and other health workers and the amount of information available on social media so that it becomes an increase in knowledge for families to improve the health status of their children.
Table 2. Distribution of Family Adherence in Giving Iron Chelation to Thalassemia Children at RSCM Kiara in 2022 (N=83)
Adherence Frequency Percentage
High 19 22,9%
Moderate 35 42,2%
Low 29 34,9%
Total 83 100,0
Based on Table 4.2, it can be seen that the majority of families have moderate compliance with a percentage of 42.2%, followed by low adherence at 34.9% and the remaining 22.9% have high compliance. Adherence is a behavior that arises from interactions between health workers and patients so that patients understand the plan and all its consequences and agree to and implement it (’Syamsiah, 2011). Various strategies that can increase compliance (Pratiwi, 2017) include support from health professionals, social support (family), and healthy behavior.
The results of this study are in line with Persiyawati's research (2015) which says that most parents who have thalassemia children have a moderate level of adherence to iron chelation drugs with a percentage of 77.8%. In contrast to the results of this study, Gustiana et al. (2020) research shows that most parents who have thalassemia children have a low level of adherence to the administration of iron chelation drugs with a percentage of 60.0%. Widia Adiratna's research (2020) showed that the factors related to the Compliance Score of taking iron chelation drugs included age, gender, knowledge of thalassemia, knowledge of iron chelation, family support, support from health workers, duration of drug consumption, drug side effects, access to hospitals and types of iron chelators.
Disobedience in giving iron chelation to children with thalassemia is due to the family who gave iron chelation to children who forgot to provide medicine as much as 56.8% then forgot also to take iron chelation medicine when traveling as much as 48.3% and difficulties when giving iron chelation to children as much as 48.3% because children sometimes get angry, sulking, etc.
Table 3. Relationship between the level of knowledge about iron chelation with adherence to giving iron chelation (N=83)
Knowledge Adherence in giving chelation
P-value r
High Moderate Low
n % n % n %
Good 19 26.8 31 43.7 21 29.6
0,006 0,30
Enough 0 0.4 4 33.3 8 66.7
Total 19 22.9 35 42.2 29 34.9
Bivariate analysis in this study was carried out with Spearman Rho. This analysis determines the relationship between family knowledge about iron and iron chelation compliance in thalassemia children at RSCM Kiara. The results of this analysis show that the p-value is 0.006 <0.05 and the r- value is 0.30, which means that there is a relationship between family knowledge about iron chelation and adherence to iron chelation in children with thalassemia at RSCM Kiara.
Based on Table 4.3, it is known that the results of the statistical test of this study with the Spearman Rho test obtained a p-value of 0.006 <0.05 and an r-value of 0.30, which means that there is a relationship between family knowledge about iron chelation and adherence to giving iron chelation in children with thalassemia at RSCM Kiara. Adherence to the provision of iron chelation is one example of health behavior that must be carried out for thalassemia sufferers. Several factors that influence the level of adherence (Pratiwi, 2017) include demographic factors (gender, status, education, and knowledge as well as socioeconomic), disease factors (such as disease severity and disappearance of symptoms due to therapy), therapeutic program factors (such as program complexity and effects of treatment unpleasant side, the treatment program can be made as simple as possible and the patient is actively involved in making the program), psychosocial factors (such as intelligence, attitudes towards health workers, acceptance or denial of illness, religious or cultural beliefs and financial and other costs including in following the regimen).
This study's results align with Adiratna et al. (2020), who said that there was a relationship between family knowledge about iron chelation and adherence to iron chelation with a p-value of 0.001 with an r-value of 0.491. For families who have children with thalassemia, it is important to know and comply with iron chelation. Syobri et al. (2020) showed that the p-value = 0.001 results, which means that there is a significant relationship between adherence to iron chelation consumption and growth in thalassemia children. The results of his research stated that thalassemia children who were obedient to consuming iron chelation had normal growth (p-value = 0.035). From the results of the study, it is known that growth disorders are complications that quite a lot occur in children who suffer from thalassemia, chronic anemia, inadequate blood transfusions, accumulation of iron in endocrine organs, and side effects of iron chelation therapy disorders are some of the causes of growth disorders in children with thalassemia. Management of growth disorders in thalassemia patients must include all aspects that
cause growth disorders, such as non-optimal transfusions, endocrine disorders, zinc deficiency, and DFO toxicity.
With a p-value of 0.014, Ramadhanti research et al. (2020) demonstrated a significant correlation between the regular use of iron chelators and the quality of life in children with thalassemia.
It is envisaged that children with thalassemia will feel more valued and excited about their lives with regular usage of iron chelation.
From the knowledge results, the results are 85% good knowledge and 14.5% knowledgeable enough, and none of them have less knowledge but only 22.9% high adherence, 34% moderate adherence, and 34.9% low adherence. Because to consume iron chelation using Deferiprone (Ferripox) is consumed three times a day (morning, afternoon, and evening), it takes time and a strong intention to give the iron chelation. This was reinforced in the obedience questionnaire, which resulted there are 3 factors of non-compliance in the provision of iron chelation, namely forgetting to give iron chelation, forgetting to bring the iron chelation when traveling, and having difficulty giving iron chelation to children because they were cranky or angry and finally did not want to drink iron chelation.
CONCLUSIONS AND SUGGESTIONS
Most families have good knowledge about iron chelation in thalassemia children at RSCM Kiara. This is because knowledge about iron chelation has begun to be obtained since his son was diagnosed with thalassemia. In addition, outpatient Kiara has an integrated education form that requires every visiting patient to be educated. So do not be surprised if the value of good knowledge is up to 85.5%.
Family compliance with the provision of iron chelation in thalassemia children at RSCM Kiara shows that most families have moderate adherence. Disobedience in giving iron chelation to children with thalassemia is caused by the family who provides iron chelation, forgetting to give iron chelation medicine, forgetting to bring iron chelation medicine when traveling, and having difficulty when giving iron chelation to children because children are sometimes angry, cranky, etc. These three factors will later be input for RSCM Kiara and nurses or medical personnel in increasing adherence to iron chelation for thalassemia children to minimize thalassemia complications.
There is a relationship between family knowledge about iron chelation and adherence to giving iron chelation in children with thalassemia at RSCM Kiara. But the relationship is low, so knowledge about iron chelation alone is not enough to make adherence to giving iron chelation in children with high adherence results. Because the majority of factors are non-adherence due to forgetting to give medicine, forgetting to take medication when traveling, and having difficulty giving iron chelation to thalassemia children. Maybe the therapeutic program factor should be improved, such as making how to consume iron chelate something fun.
The suggestion for hospitals is the need for socialization among nurses, doctors, or other health workers so that education on adherence to iron chelation can be improved again. Or it can be used as an indicator of quality in the thalassemia polyclinic.
REFERENCES
Adiratna, W., Udiyono, A., & Saraswati, L. D. (2020). Hubungan Pengetahuan Dan Dukungan Sosial Terhadap Skor Kepatuhan Minum Obat Kelasi Besi Pada Pasien Thalassemia. Jurnal Kesehatan Masyarakat, 8(1), 23–29.
Arifna, F. , I. J. , & Y. H. (2017). Hubungan Kepatuhan Minum Obat Kelasi Besi Terhadap Perkembangan Seks Sekunder Pada Anak Penderita Thalasemia Beta Mayor. Jurnal Ilmiah Mahasiswa Medisia, 2(3), 13–17.
Badan Penelitian Dan Pengembangan Kesehatan. (2013). Riset Kesehatan Dasar (RISKESDA) . Dahnil, F., Mardhiyah, A., & Widianti, E. (2017). Assessment Of Supportive Care Needs In Parents Of
Children With Thalassemia. NurseLine Journal, 2(1), 1. https://doi.org/10.19184/nlj.v2i1.5994 Gustiana, H., Gunantara, T., & Rathomi, H. S. (2020). Kepatuhan Konsumsi Obat Kelasi Besi dan Kadar
Serum Feritin Pasien Talasemia Beta-Mayor di RSUD Al-Ihsan Bandung. Jurnal Integrasi Kesehatan & Sains, 2(1), 26–30. https://doi.org/10.29313/jiks.v2i1.5572
Marnis, D., ’Indriati, G., & ’Nauli, F. (2018). Hubungan Tingkat Pengetahuan Ibu Dengan Kualitas Hidup Anak Thalasemia. Jurnal Keperawatan Sriwijaya, 5(2), 31–42.
Modell, B. (2008). Global epidemiology of haemoglobin disorders and derived service indicators.
Bulletin of the World Health Organization, 2008(6), 480–487.
https://doi.org/10.2471/BLT.06.036673
Notoatmodjo, S. (2012). Metodologi Penelitian Kesehatan. Rineka Cipta.
Nursalam. (2013). Metodologi Penelitian Ilmu Keperawatan: Pendekatan Praktis (3rd ed.). Salemba Medika.
Persiyawati, Y. (2015). Kepatuhan Orang Tua Anak Penyandang Thalassemia dalam Meminimalisir Kelebihan Zat Besi di Poli Thalassemia RSUP dr. Hasan Sadikin Bandung. Universitas Padjadjaran.
Pratiwi, K. (2017). Dukungan Sosial Orang Tua Dalam Pengobatan Dan Perawatan Pada Anak Penderita Thalasemia. Universitas Airlangga.
Rahayu, Y. , M. E. , & W. J. (2016). Dukungan Keluarga dalam Kepatuhan Terapi pada Pasien Thalasemia di Rumah Sakit Umum Daerah Kabupaten Ciamis Tahun 2015 Family Support in Compliance Therapy in Patients with Thalassemia in Ciamis District Hospital in 2015. Mutiara Medika, 16(2), 52–56.
Ramadhanti, I., Patimah, I., & Kusnadi Engkus. (2020). Hubungan Keteraturan Pemakaian Kelasi Besi Dengan Kualitas Hidup Anak Penyandang Thalassemia. Jurnal Medika Cendikia, 7(2).
Syamsiah. (2011). Faktor-faktor yang Berhubungan Hipertensi. Jurnal Visikes, 10(2), 115–123.
Syobri, M., Mustofa, F. L., & Triswanti, N. (2020). Hubungan Kepatuhan Konsumsi Kelasi Besi Terhadap Pertumbuhan Anak Dengan Thalassemia. Jurnal Ilmiah Kesehatan Sandi Husada, 11(1), 387–391. https://doi.org/10.35816/jiskh.v11i1.300
Vivienka, S. (2020). Perbandingan Tingkat Pengetahuan Orangtua Pada Anak Penderita Thalassemia Sebelum Dan Sesudah Diberi Informasi Dasar Tentang Thalassemia Di Popti Palembang.
Universitas Muhammmadiyah Palembang.