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Abstract

Introduction

Thalassemia is a hereditary condition that causes chronic anemia and is a serious public health concern globally. Quality of life is a concept to help healthcare professional understand the impact of disease or treatment of life. While many quality of life studies have been performed to improve patient care in developed countries, such research and their practical implementation are limited in developing countries such as Indonesia.

Objective

This study aimed to assess the quality of life in adolescent with thalassemia in Indonesia, and determining its main clinical and demographic correlations.

Methods

This was a cross-sectional study. Data were collected between December 2020 and May 2021 from patients diagnosed with beta thalassemia in Indonesia. The study involved adolescent diagnosed with thalassemia major and had been officially recorded in the thalassemia association records at least three months prior data collection. TranQOL was used to measure quality of life. Linear regression with enter method was used to determine factors associated with quality of life.

Results

showed that 63% of thalassemic adolescents were aged at 10 to 15 years old and 76% of them had diagnosed with beta thalassemia at aged less than one year old. About 54% (n = 130) of the sample were boy and 45% (n = 108) were junior high school. The highest mean score was reported for physical health (58.3 ± 14.8) and the lowest score was reported for the school and career functioning (52.6 ± 14.3). Age, gender, comorbidity, and hemoglobin concentration explained 10.5% of the variances in the total quality of life.

Conclusions

The results of this study that thalassemia has a detrimental impact on the quality of life of Indonesian adolescents. Healthcare providers must expand their access to information and abilities in order to fulfill new nursing responsibilities as genetic educators and counselors.

Keywords

quality of life adolescent thalassemia Indonesia

Introduction

Thalassemia is a severe hereditary condition that causes chronic anemia and is a global public health concern (Mediani et al., 2017; Voskou et al., 2015). Around 1.5% of the global population is considered to be a beta thalassemia carrier (Al-Tayar et al., 2019; De Sanctis et al., 2017; Shafie et al., 2020). At least 12% of children born with beta thalassemia require blood transfusions, with genetic prevalence varying across countries (Al-Tayar et al., 2019; De Sanctis et al., 2017; Shafie et al., 2020). Thalassemia major causes 50,000–100,000 deaths annually, with at least 3000 deaths from iron overload, with 90% of cases occurring in low- or developing-income countries (Al-Tayar et al., 2019; De Sanctis et al., 2017; Shafie et al., 2020). Indonesia has a high prevalence of thalassemia, with 6–10% of the population being carriers (Ministry of Health, 2019a). In 2018, the number of thalassemia patients in Indonesia increased from 4,896 to 9028, with West Java having the highest incidence, accounting for 40% of all cases (Ministry of Health, 2019b). Around 70% of thalassemia patients who received blood transfusions were adolescents (Maghfiroh et al., 2014).

Review of Literature

Quality of life is a concept used by healthcare professionals to understand the impact of disease or treatment, including chronic pain in adolescents (Haraldstad et al., 2017). Studies in Iran reveal significant disparities in the quality of life for children and adolescents with thalassemia compared to healthy children, they suffer from poor physical and mental health (Bazi et al., 2017). A systematic review suggesting improved access to blood transfusion regimens, iron chelation therapy, and supportive care could improve their quality of life (Sarker et al., 2014).

Factors associated with quality of life of adolescents were reported inconsistent in previous studies (Hakeem et al., 2018). For example, a previous study found that thalassemia treatment and cultural differences did not significantly impact the health and well-being of individuals with thalassemia (Telfer et al., 2005). Another study reported that gender, ethnicity, or household wealth did not influence quality of life in thalassemic children (Abetz et al., 2006; Payne et al., 2008). Understanding factors affecting thalassemia quality of life among adolescents could improve clinical treatment, consultation, and social assistance programs, while offering aggressive care support to at-risk groups. While many quality of life studies have been performed to improve patient care in developed countries, research and their practical implementation are limited in developing countries such as Indonesia (Barzallo et al., 2020). The study aims to evaluate the quality of life for adolescents with thalassemia in Indonesia and identify clinical and demographic correlations.

Material and Methods

This was a cross-sectional study of beta thalassemia patients registered at thalassemia center in Bandung, West Java, Indonesia. The number of adolescents aged 10–19 years recorded at the thalassemia center in the Bandung is approximately 250 people. The data collection period was from December 2020 to May 2021.

Sample

The sample of this study was adolescents with thalassemia as verified from medical records. The inclusion criteria were adolescent aged 10 to 19 years old, received regular transfusions, able to write and read, and willing to participate in this study. Exclusion criteria were adolescent who diagnosed with mental retardation or cognitive impairment. The sample size was calculated using G-Power Software Version 3.1.9.4, with a α = 0.05, estimated effect size of 0.10 (Cohen, 1988), power level of 0.80, and 10 predictors. So, a minimum sample was 172 adding 20% attrition rate. A convenience sampling was used to select participants in this study.

Instrument

The demographic data sheet was collected according to the parent report and confirmed with their medical records. Data on adolescent thalassemia including: age, gender, education level, presence of comorbidity (yes/no for the conditions such as cardiac diseases or non-diabetes endocrine disorders, including hypoparathyroidism, hypopituitarism, and hypothyroidism, etc), duration of transfusion, age at first transfusion.

TranQOL is a disease-specific quality of life assessment for thalassemia major patients (Klaassen et al., 2013). It contains 29 items in four domains (physical health, emotional health, family functioning, and school/work functioning). The age-appropriate item was administered to patients at a typical clinic or transfusion visit. The higher the scores (from 0–100), the better the quality of life. Cronbach's alpha was 0.84. In the current study, the Cronbach's alpha was 0.84.

Data Collection

Adolescent individuals with thalassemia were invited to fill out a questionnaire during a social group meeting which held every two weeks in the Thalassemia foundation. The surveys were distributed to adolescents and they were educated on how to complete the questionnaire. It took approximately 10–15 min to finish the survey questions in its entirety.

Data Analysis

We conducted normality testing for each variable and the results showed the data was normally distributed based on the nonsignificant Kolmogorov–Smirnov test. The mean and standard deviation (SD) was used to represent continuous data. The student's t-test or One-Way Analysis of Variance (ANOVA) were used to investigate the relationships between variables. Linear regression with enter method was used to determine factors associated with quality of life. A forward step-wise strategy was applied to select significant independent variables with p < .05 as the inclusion criterion. Then, we tested collinearity using the variance inflation factors (VIF), we found that VIF for each independent variables <4 (VIF results >4; (O’Brien-Pallas et al., 2006)). Statistical significance is defined as a p-value 0.05. The SPSS Statistics Version 25 (IBM Corporation, Software Group, Somers, NY, USA) was used to analyze the data.

Ethical Consideration

The study was approved by the Institutional Review Board at STIKep PPNI Jawa Barat. A detailed letter explaining the purpose of the study was given to the parents of thalassemic adolescents before they filled out the questionnaire. In the consent form, participants were informed that they had the right to withdraw from the study without any penalties. Subjects under the age of 20 years old had to give written permission from their legal guardians.

Results

Table 1 presents the results of descriptive analysis of socio-demographic characteristics of thalassemic adolescents. The study found that 63% of thalassemic adolescents were aged 10–15 years old, with 76% diagnosed at less than one year old. The majority were boys (54%, n = 130) and 47% of participants receiving transfusions every two weeks. Approximately 73% had hemoglobin concentrations between 7 and 8 mg/dL, and most had ferritin checked every 3 to 6 months. About 8% of participants having comorbidity.

Table 1.

Frequency Analysis of the Socio-Demographic Characteristics of Thalassemic Adolescents (N = 240).

Variables	n (%)
Age
10–15	151 (63)
16–19	89 (37)
Gender
Boy	130 (54)
Girl	110 (46)
Education level
Elementary school	84 (35)
Junior high school	108 (45)
Senior high school	48 (20)
Transfusion period
Every one week	67 (28)
Every two weeks	113 (47)
Every three weeks	48 (20)
Every month	12 (5)
Comorbidity
Yes	19 (8)
No	221 (92)
Hemoglobin (mg/dL) before transfusions
5–6	65 (27)
7–8	175 (73)
Frequency of ferritin check
Once in every 1 to 3 months	24 (10)
Once in every 3 to 6 months	216 (90)
Age at first diagnose
Less than one year old	182 (76)
1–5 years old	10 (4)
more than 5 years old	48 (20)

The total mean of the quality of life for thalassemic adolescents was 54.4 ± 17.7 with a range from 0–100. The highest mean score was reported for physical health domain (58.3 ± 14.8), followed by family functioning domain (55.1 ± 16.2) and emotional health domain school and career functioning domain (53.4 ± 13.7). The school and career functioning domain were the lowest domain score of quality of life (52.6 ± 14.3) (Table 2).

Table 2.

Descriptive Analysis of Quality of Life of Thalassemic Adolescents for all Dimensions.

Variables	Mean ± SD
Total score quality of life	54.4 ± 17.7
Domain score
Physical health	58.3 ± 14.8
Emotional health	53.4 ± 13.7
Family functioning	55.1 ± 16.2
School and career functioning	52.6 ± 14.3

There were significant differences in quality of life according to age in physical health, emotional health, family functioning, school and career functioning; younger aged had lower quality of life than older age (Table 3). Girls had higher score of quality of life than boys in the physical health (54.5 ± 15.3 vs. 52.7 ± 14.6, p-value = 0.050) and emotional health (56.9 ± 11.5 vs. 52.8 ± 15.6, p-value = 0.031). Having comorbidity was associated with lower quality of life in domain of physical health (52.4 ± 13.5 vs. 57.3 ± 12.1, p-value = 0.002). Higher hemoglobin concentration was significant associated with higher quality of life in physical health (57.8 ± 14.0 vs. 52.6 ± 15.3, p-value = 0.0280 and school and career functioning (59.6 ± 12.4 vs. 52.7 ± 11.5, p-value = 0.001). There were no significant differences in quality of life according to education level, transfusion period, frequency of ferritin check, and age at first diagnose.

Table 3.

Relationship Between Socio-Demographic and Clinical Characteristics with Quality of Life Domains.

Variables	Total of QOL	Physical health	Emotional health	Family functioning	School and career functioning
Variables	Total of QOL	Mean ± SD	Mean ± SD	Mean ± SD	Mean ± SD
Age
10–15	51.7 ± 11.75	53.2 ± 12.5	54.5 ± 11.6	53.8 ± 11.2	44.45 ± 13.8
16–19	55.3 ± 15.34	55.8 ± 16.4	60.9 ± 15.8	58.1 ± 12.1	48.75 ± 17.4
p-value	0.001	0.021	0.001	0.001	0.001
Gender
Boy	50.5 ± 13.56	52.7 ± 14.6	52.8 ± 15.6	52.3 ± 12.2	46.3 ± 12.3
Girl	52.3 ± 11.75	54.5 ± 15.3	56.9 ± 11.5	54.1 ± 11.8	47.2 ± 10.5
p-value	0.076	0.050	0.031	0.183	0.243
Education level
Elementary school	52.8 ± 13.43	51.3 ± 15.8	52.0 ± 13.5	53.1 ± 12.5	55.7 ± 12.8
Junior high school	55.3 ± 12.25	52.8 ± 12.6	58.1 ± 15.2	55.2 ± 13.4	56.6 ± 11.3
Senior high school	55.0 ± 13.32	54.5 ± 13.9	55.6 ± 11.6	57.9 ± 12.3	53.2 ± 14.7
p-value	0.315	0.224	0.162	0.189	0.132
Transfusion period
Once in two weeks	55.5 ± 14.0	57.5 ± 15.8	55.8 ± 13.1	53.4 ± 13.0	57.2 ± 13.2
One in a four week	53.8 ± 15.4	52.3 ± 14.7	54.3 ± 12.9	55.8 ± 14.3	54.1 ± 14.3
Every three weeks	54.2 ± 14.82	53.8 ± 14.1	52.3 ± 16.7	55.6 ± 14.5	55.3 ± 13.9
Every month	55.3 ± 12.82	55.1 ± 12.5	56.3 ± 13.9	55.3 ± 12.4	55.1 ± 13.5
p-value	0.412	0.228	0.156	0.121	0.367
Comorbidity
Yes	52.8 ± 12.54	52.4 ± 13.5	52.6 ± 12.3	53.1 ± 12.9	53.7 ± 12.1
No	54.5 ± 13.0	57.3 ± 12.1	53.2 ± 11.4	55.0 ± 14.8	53.0 ± 13.9
p-value	0.143	0.002	0.272	0.438	0.315
Hemoglobin (mg/dl)
5–6	52.8 ± 12.76	52.6 ± 15.3	53.3 ± 14.6	53.8 ± 11.8	52.7 ± 11.5
7–8	57.3 ± 12.75	57.8 ± 14.0	55.0 ± 12.7	56.0 ± 12.5	59.6 ± 12.4
p-value	0.0113	0.028	0.290	0.327	0.001
Frequency of ferritin check
Once in every 1 to 3 months	59.32 ± 15.32	57.1 ± 14.2	62.1 ± 15.5	52.8 ± 18.1	64.7 ± 15.8
Once in every 3 to 6 months	63.5 ± 14.50	54.6 ± 16.1	69.6 ± 13.9	62.2 ± 14.5	67.6 ± 14.2
p-value	0.315	0.165	0.144	0.325	0.265
Age at first diagnose
Less than one year old	54.0 ± 15.12	54.1 ± 15.6	53.4 ± 15.8	54.0 ± 15.1	55.6 ± 13.2
1–5 years old	55.3 ± 13.75	57.3 ± 13.9	57.7 ± 14.1	55.1 ± 14.2	51.4 ± 12.7
more than 5 years old	55.3 ± 14.75	56.6 ± 12.3	55.6 ± 15.2	52.6 ± 16.7	55.2 ± 14.6
p-value	0.354	0.324	0.231	0.153	0.310

Factors associated with quality of life of thalassemic adolescents using linear regression showed that age, gender, comorbidity, and hemoglobin concentration explained 10.5% (adjusted R²= 0.105) of the variances in the total quality of life, and this is statistically significant at p value < 0.05. Having comorbidity were negatively associated with quality of life (Table 4).

Table 4.

Factors Influencing Quality of Life for Thalassemic Adolescents.

	B	SE	Beta	t	p-value
Constant	0.35	0.056	-	4.90	0.001
Age	0.41	0.045	0.043	6.23	0.001
Gender	0.23	0.032	0.076	3.87	0.001
Comorbidity	0.40	0.076	−0.49	4.75	0.001
Hemoglobin concentration	0.52	0.106	0.207	7.06	0.001

Discussion

Our findings indicated that adolescents with thalassemia had a lower mean quality of life, reflecting that thalassemia has an impact on the physical, social and emotional lives of adolescents. Previous research has revealed that adolescents with thalassemia have a lower quality of life than those with normal or intermediate thalassemia (Chordiya et al., 2018; Molavynejad, 2016; Wahyuni et al., 2011). However, our findings demonstrated that, despite advancements in diagnosis and treatment technology, as well as the ease with which professional care can be acquired in Indonesia, adolescents with thalassemia still have a poor quality of life. The identification of key major contributors and tailored interventions that can assist individuals in improving their quality of life is therefore crucial.

The lowest quality of life scores was reported for the school and career functioning, followed by emotional health and family functioning. This can be linked to absences from school due to illness, as well as difficulties in completing assignments. Every month, a thalassemic adolescent was absent from school for one to 3 days due to blood transfusion (Ratip et al., 1995). These findings corroborate with previous study conducted by Thavorncharoensap et al. (2010). A study by Lightfoot et al. (1999) found that, despite the fact that chronic sickness does not affect children's cognitive ability, it has a negative influence on academic progress, especially when compared to healthy children. In addition, schools could alter their teaching methods to accommodate students who are unable to attend school or have other obligations that prevent them from fully participating. In order to address the physical, emotional, social, and cognitive requirements of children, findings from this study can be used to develop a communication system between educational institutions and health care providers.

The study found that older people had a higher quality of life score than younger people. (Michalak et al., 2005) concluded that quality of life decreased as one's age progressed, however this study found that quality of life increased with age. Our findings indicated that girls had higher score of quality of life than boys in the physical health and emotional health. Findings of the current study were inconsistent with those of Lam and colleagues regarding gender; male and female children reported similar mean score for quality of life (Lam et al., 2021). To be clear, all of the studies listed above are cross-sectional research, and the better way to approach this problem is thru longitudinal research, where new patients are followed up all across their illness via sequential quality of life analyses, so that we can arrive at an answer to these questions conclusively.

Moreover, adolescents with thalassemia who had a higher hemoglobin, had a higher quality of life score, which corroborated previous research (Atwa & Wahed, 2019; Chordiya et al., 2018; Mariani et al., 2014; Wan-Nor-Asyikeen et al., 2017). In this study measurement of Hb was conducted during social group activity which was before transfusion. This might impact on increasing symptoms just before their transfusions are due, at a time when the Hb is presumably at its lowest. Thus, future studies might need using a longitudinal design to measure quality of life and its associated factors particularly related to transfusion frequency and Hb level to understand the dynamic change of each variable and provide more comprehensive understanding to the clinical practices. This study, on the other hand, found no connection between the length of a patient's transfusion period and their quality of life. It was found that having comorbidity was connected with a lower quality of life. Increased iron overload and elevated serum ferritin are associated with a wide range of problems that affect the quality of life.

Strengths and Limitations

This study has few limitations. First, because this is a cross-sectional study, the relationship between quality of life and factors cannot be interpreted as causal. Second, study was only conducted in one province since Indonesia has 34 provinces, which may limit the generalizability of the findings. Third, the study relied on self-reported quality-of-life measures, which are susceptible to recollection biases. Future empirical prospective studies in different setting or culture are required.

Implications for Practice

The results of this study show that thalassemia has a detrimental impact on the quality of life of Indonesian adolescents. The disease detrimental effect was substantially associated with adolescents educational and physical functioning. Therefore, factors having a stronger effect on quality of life should be given higher priority in future quality of life interventions. Moreover, the relevance of analyzing the quality of life of children with thalassemia must be understood by Indonesian healthcare practitioners. Additionally, healthcare providers must expand their access to information and abilities in order to fulfill new nursing responsibilities as genetic educators and counselors. Also, future research should look into socio-cultural factors that influence children's life satisfaction.

Conclusion

The study found that adolescents with thalassemia had low quality of life, especially in school and career functioning. Age, gender, comorbidity, and hemoglobin concentration explained of the variances in the total quality of life.

Footnotes

Acknowledgments

We thanks to all participants to join in this study.

Author Contributions

AM, SLP, HSM, and IY were responsible for study supervision. AM was responsible for study concept and design and drafting of the manuscript. AM and SLP was involved in evolving the ideas and editing the manuscript. AM, HSM, and IY collected the data and data analysis. All authors have contributed to and have approved the final manuscript.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethics Statement

The studies involving human participants were reviewed and approved by the Institutional Ethical Review Board of STIKep PPNI Jawa Barat.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Ai Mardhiyah

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(2011). Quality of life assessment of children with thalassemia. Paediatrica Indonesiana, 51(3), 163. https://doi.org/10.14238/pi51.3.2011.163-9

30.

Wan-Nor-Asyikeen

Ab Hamid

S. A.

Mohd Zulkifli

Zilfalil

Hamid

(2017). Factors affecting health-related quality of life among paediatric patients with thalassemia: A review of literature. Malaysian Journal of Paediatrics and Child Health, 23(1).

Factors Associated With Quality of Life Among Adolescent With Beta Thalassemia in Indonesia: A Cross-Sectional Study

Abstract

Introduction

Objective

Methods

Results

Conclusions

Keywords

Introduction

Review of Literature

Material and Methods

Sample

Instrument

Data Collection

Data Analysis

Ethical Consideration

Results

Discussion

Strengths and Limitations

Implications for Practice

Conclusion

Footnotes

Acknowledgments

Author Contributions

Declaration of Conflicting Interests

Ethics Statement

Funding

ORCID iD

References