Self-care management among children and adolescents with diabetes mellitus in Malaysia

Abstract

The study aimed to evaluate diabetes self-care among diabetic children and adolescents and compare with glycaemic control. Summary of Diabetes Self-Care Activities (SDSCA) questionnaire was distributed to patients aged 10–18 years with types 1 and 2 diabetes mellitus (DM) at paediatric diabetes clinics in Malaysia. Haemoglobin A1c levels were measured after questionnaire completion. A total of 106 patients completed the questionnaire with a mean age of 13.91 (± SD 2.48) years. Mean haemoglobin A1c and SDSCA score were 9.78 (± SD 2.43)% and 19.09 (± SD 5.81), respectively. Type 1 DM patients had significantly higher haemoglobin A1c (10.11 95% CI [9.62, 10.59] vs 8.38 95% CI [7.13, 9.62]). Total score was higher in type 1 DM although not statistically significant (19.32 95% CI [18.21, 20.43] vs 18.08 95% CI [14.28, 21.87]). Blood glucose testing score was significantly higher in type 1 DM (5.24 95% CI [4.82, 5.66] vs 3.50 95% CI [2.23, 4.77]). There was statistically significant negative correlation between score in diet subcategory and haemoglobin A1c. In conclusion, self-care activities among diabetic children and adolescents are still suboptimal. Self-care activities on blood glucose testing are significantly better in type 1 DM. Diet section correlated well with glycaemic control necessitating further research.

Keywords

Self-care type 1 diabetes mellitus type 2 diabetes mellitus children adolescents

Introduction

Diabetes mellitus (DM) is a recognized metabolic disorder which has been showing a significant rise worldwide (International Diabetes Federation, 2019). Children and adolescents have not been spared from this increasing trend of type 1 (T1DM) and type 2 DM (T2DM) (International Diabetes Federation, 2019; Lynch et al., 2020). T1DM is the main type of DM affecting this population, and the incidence has been shown to be increasing globally (International Diabetes Federation, 2019; Negrato et al., 2017; Piffaretti et al., 2019). Although more common, misdiagnosis of T1DM in especially younger children does still occur especially in countries with lower prevalence, for example, Malaysia (Mavinkurve et al., 2021).

Type 2 DM has become more common in adolescents and accounts for a significant proportion of youth onset diabetes in certain at risk populations (Lynch et al., 2020). This is partly due to the rise in obesity in childhood and adolescence (Di Cesare et al., 2019; Fanzo et al., 2018). Diabetes in Children and Adolescents Registry (DiCARE) 2006–2007 reported that among newly diagnosed children and adolescents with DM in Malaysia, 17.5% had T2DM (Fuziah et al., 2008).

Aiming for an optimal glycaemic control among diabetic patients is vital to reduce the progression to chronic complications. Multiple studies have investigated the glycaemic control among children and adolescents with DM and factors associated with it (Cheng et al., 2021; Dayal et al., 2022; Teoh et al., 2022).

Diabetes care among patients may vary between centres (Mustapha et al., 2020). Diabetes management does not only entirely depend on medication prescribed by the physician but also on patient’s own initiatives to maintain a healthy lifestyle. Camp-Spivey et al. (2022) in their review to evaluate self-management strategies in children with chronic illnesses reported on the importance of families, healthcare professionals as well as peers in order to help the children with chronic illnesses to adopt better self-care behaviours. Self-care activities in patients with DM have been acknowledged to be a vital part in the management (Shrivastava et al., 2013).

Individuals with DM have been shown to make a dramatic impact on the progression and development of their disease by participating in their own care (Shrivastava et al., 2013). Improvements in blood glucose levels, glycosylated haemoglobin (HbA1c) and dietary habits have been seen with adequate self-care activities (Vincent et al., 2008). This ultimately will ensure reduction in the risk of micro and macrovascular complications of DM in later life (Shrivastava et al., 2013). Ali and Sayej (2014) recommended for children with DM to have a good understanding of self-care practices and also to have self-care practices education programmes as soon as possible after diagnosis.

Toobert et al. (2000) reported that the educators and healthcare professionals require reliable and valid tools for diabetes self-care so that assessment of self-care behaviour among diabetic patients can be made. The importance of a reliable tool is partly because the majority of daily care of this condition rely on the patients and their family members (Ishak et al., 2017). Summary of Diabetes Self-Care Activities (SDSCA) questionnaire is a brief self-reported instrument to measure the level of self-management across various components of DM regimen (Toobert and Glasgow, 1994; Toobert et al., 2000). The average inter-item correlations within scales in the questionnaire were high with a mean of 0.47; however, the exception was noted in the specific diet category whereby the test–retest correlations were seen as moderate with a mean of 0.40 (Toobert et al., 2000).

In Malaysia, Jalaludin et al. (2012) has published the validated Malay version of the revised SDSCA, for children aged 10–18 years, which is more relevant to the population. Only one small study had looked at the association between self-care practices, HbA1c and quality of life in 32 T1DM children in Malaysia (Bujang et al., 2013). Their study showed that self-care practice for diet improved glycaemic control. However, there is no other study in the country looking at the self-care behaviour in T2DM children.

This study is the first multi-centre study to use the validated Malay version of the revised SDSCA questionnaire in Malaysia among children and adolescents with both T1DM and T2DM. This study will hopefully be the starting point to encourage other paediatric diabetes centres in Malaysia to use this as an assessment tool to improve patient care.

Aim

To evaluate diabetes self-care management among diabetic children and adolescents and compare the SCSCA score with their glycaemic control (using HbA1c).

Methods

Study design and setting

This is a multi-centre cross-sectional study involving patients with T1DM and T2DM attending Universiti Teknologi MARA (UiTM) and University Malaya Medical Centre (UMMC) paediatric diabetes clinics between the years 2015 and 2019. Convenience sampling method was used whereby all T1DM and T2DM children and adolescents who attended the clinics were recruited. Parents or legal guardians who had given their informed consent and children and adolescent who had given their assent were included into the study.

All study participants were given the SDSCA questionnaire during their routine clinic visits. They were allowed to choose between the English or Malay translated version of the questionnaire. HbA1c levels were measured on the same day by the clinical team attending the patients at their regular clinic visit. Results were then traced by the researchers.

Participants

Participants included in the study involved patients aged 10–18 years with T1DM and T2DM.

Exclusion criteria included T1DM and T2DM patients who were younger than 10 years and older than 18 years and those with other types of diabetes, for example, maturity-onset diabetes of the young (other than T1DM and T2DM). Patients with psychiatric disorders or who were intellectually limited were also excluded from the study since these groups of patients may not be able to complete the questionnaire adequately.

Parents and patients who refused to give consent or assent were also excluded from the study. Sample size was calculated using OpenEpi with 80% power of study and taking into account a 10% attrition rate. For this calculation, a prevalence of T1DM in children of 0.75/1000 by Yeşilkaya et al. (2017) was used, giving the required total samples of 106.

Data collection

Data collected from the SDSCA questionnaire were entered. Demographic details including age, sex, race, year of diagnosis and duration of diabetes were also captured. Other than that, HbA1c results of each participant were also collected.

SDSCA questionnaire

SDSCA questionnaire used in this study assessed four aspects of diabetes regimen: diet, exercise, glucose testing and foot care. Choices ranged from 0 to 7, with higher scores indicating better self-care performance. This questionnaire assessed the self-care activities in a given week. The reliability and validity of the questionnaire had been described by Jalaludin et al. (2012) previously among children and adolescents aged 10–18 years, with the overall reliability of 0.735.

Ethical approval

The study obtained the institutional ethical approval from UiTM and UMMC (reference numbers 600-IRMI (5/1/6) and 1017.10, respectively).

Data analysis

Statistical Package for Social Sciences (SPSS) version 27.0 (IBM Corporation, Chicago, IL, USA) was used to perform the analyses. Chi-squared test was used for categorical data while t-test was used for continuous data. For nonparametric statistics, Spearman’s correlation coefficient test was employed to examine the correlations. Differences among groups were analyzed using one-way ANOVA. Results are presented as mean ± standard deviation (SD). The level of statistical significance was set at p-value <0.05.

Results

A total of 106 patients were included in the current study with a mean age of 13.91 (± SD 2.48 years). Most of our participants used the Malay version questionnaire, and only 8% of our participants used the English version questionnaire. All participants did not report any difficulty in answering the questionnaires. Baseline characteristics of the participants are represented in Table 1. There were 86 (81.1%) T1DM and 20 (18.9%) T2DM patients in the study. The differences between T1DM and T2DM patients with regards to their baseline characteristics and HbA1c levels are also highlighted in Table 1.

Table 1.

Baseline characteristics of total participants and diabetes type.

	Total (N = 106) [n (%)]	T1DM (n = 86) [n (%)]	T2DM (n = 20) [n (%)]
Age
Mean in years [95% CI]	13.91 [13.43, 14.38]	13.87 [13.33, 14.41]	14.05 [12.93, 15.17]
Gender
Male	46 (43.4%)	36 (41.9%)	10 (50.0%)
Female	60 (60.6%)	50 (58.1%)	10 (50.0%)
Ethnicity
Malay	41 (38.7%)	33 (38.4%)	8 (40.0%)
Chinese	24 (22.6%)	23 (26.7%)	1 (5.0%)
Indian	41 (38.7%)	30 (34.9%)	11 (55.0%)
DM type
T1DM	86 (81.1%)
T2DM	20 (18.9%)
HbA1c
Mean in % [95% CI]	9.78 [9.31, 10.25]	10.11 [9.62, 10.59]	8.38 [7.13, 9.62]
Duration of DM
Mean in years [95% CI]	4.76 [4.04, 5.49]	5.37 [4.57, 6.17]	2.15 [0.94, 3.36]

DM: diabetes mellitus; CI: confidence interval.

Mean HbA1c for total population, T1DM and T2DM were 9.78 95% CI [9.31, 10.25]%, 10.11 95% CI [9.62, 10.59])% and 8.38 95% CI [7.13–9.62])%, respectively (Table 1). There was statistically significant difference between mean HbA1c and duration of DM between the different types of DM. T1DM subjects had higher mean HbA1c levels with longer DM duration (Table 1)

The mean SDSCA score for the total population was 19.09 ± SD 5.81. The SDSCA score for blood glucose testing subcategory was significantly higher in T1DM than T2DM (5.24 95% CI [4.82, 5.66] vs 3.50 95% CI [2.23, 4.77]). However, the total SDSCA score, although higher in T1DM than T2DM, was not statistically significant (19.32 95% CI [18.21, 20.43] vs 18.08 95% CI [14.28, 21.87]). Detailed scores for total and each group are depicted in Table 2.

Table 2.

SDSCA score of all participants.

	Total (N = 106)Score [95% CI]	T1DM (n = 86)Score [95% CI]	T2DM (n = 20)Score [95% CI]
Diet	3.98 [3.70, 4.26]	4.02 [3.71, 4.33]	3.80 [3.09, 4.51]
Exercise	3.70 [3.32, 4.07]	3.63 [3.23, 4.04]	3.98 [2.96, 4.99]
Blood glucose testing	4.91 [4.48, 5.34]	5.24 [4.82, 5.66]	3.50 [2.23, 4.77]
Foot care	2.50 [2.02, 2.97]	2.39 [1.88, 2.90]	2.95 [1.65, 4.25]
Total score	19.09 [17.97, 20.20]	19.32 [18.21, 20.43]	18.08 [14.28, 21.87]

DM: diabetes mellitus; score: mean number of days per week; CI: confidence interval.

There was a statistical significant negative correlation between SDSCA score in the diet subcategory and the HbA1c level in the total population. However, there was no significant correlation between the total SDSCA score and other subcategory scores with HbA1c (Table 3).

Table 3.

Relationship between mean SDSCA score and HbA1c.

	Spearman correlation (r)	95% CI
Diet	−0.215	−0.39, −0.02
Exercise	0.050	−0.14, 0.24
Blood glucose testing	0.048	−0.14, 0.24
Foot care	−0.063	−0.13, 0.25
Total score	−0.070	−0.12, 0.26

CI: confidence interval.

Further analyses comparing self-care activities and age, sex and race, respectively, were not statistically significant.

Discussion

This study aimed to evaluate the diabetes self-care management among diabetic children and adolescents and compare the SDSCA score with their HbA1c. The SDSCA scores were found suboptimal in both T1DM and T2DM adolescents. This finding is similar to Lin et al. (2016) where they reported poor self-care behaviours using the same questionnaire. However, the study included only T1DM patients and was conducted in patients with a wide age range from 3 to 65 years (Lin et al., 2016). Unfortunately, studies looking at self-care in diabetic children to date are very limited, and hence this study is very valuable and timely.

We also found that total SDSCA score was higher in T1DM than T2DM although not statistically significant. This is mainly contributed by significantly higher score in the blood glucose testing subcategory for the T1DM than T2DM. Patients with T1DM usually tend to test their blood glucose more often since they will need to adjust their insulin requirement based on the food consumption as well as blood glucose levels to make necessary correction. Patients with T2DM on oral medication alone may also not be very vigilant with their blood glucose levels, hence giving lower score in this subcategory.

Cost of self-monitoring blood glucose (SMBG) is also another potential reason behind the suboptimum care since most of our patients need to buy the glucometer and the strips on their own similar to some other countries (McGuire and Ji, 2012). One adult T2DM study in the primary care setting showed that the highest score was noted in general diet subcategory while the lowest was in blood glucose testing (Tharek et al., 2018). A study among T1DM adults in Sweden found that only less than 50% of subjects followed the recommendation of doing SMBG ≥4 times a day. Sweden provides glucose meters and strips to patients at no cost as compared to some other countries (Mostrom et al., 2017).

Testing blood glucose level at school is not very convenient which may also contribute to less than recommended SMBG monitoring in children and adolescents with T1DM. Chang et al. reported that most of their T1DM patients (80%) tested their blood glucose levels only twice per day, mostly in the mornings and evenings while they were at home due to the inconvenience of bringing the glucometer to schools and also asking for a private room for testing each time (Chang et al., 2007). These factors are concerning since previous study had shown that frequent blood glucose monitoring is associated with lower HbA1c (Haller et al., 2004). Optimal glycaemic control in patients with diabetes reduces the risk of long-term complications in the future. Diabetes Control and Complication Trial (DCCT) which is a landmark study showed that tight glycaemic control managed to delay the start and reduce the rate of progression of chronic diabetes complications (Diabetes Control and Complications Trial Research Group, 1993).

The current study addresses that the lowest self-care activity was noted in the foot care subcategory in both T1DM and T2DM children and adolescents. This is consistent with the finding by Lin et al. (2016). This is possibly contributed by the lack of awareness among our patients and parents with respect to the importance of foot care. A study in Saudi Arabia also reported low level of knowledge and practice among diabetic patients aged 6–75 years attending their clinics (Wazqar et al., 2021). One prospective study looked at foot care among children and adolescents with T1DM and T2DM at baseline and during follow-up and then evaluated the effectiveness of foot care education in the same group. The study highlighted the importance of foot examination among diabetic children and adolescents. Following foot care education, significant reduction in modifiable foot problems was recorded (Rasli and Zacharin, 2008). It is therefore important to raise awareness of the importance of foot self-care among children and adolescents with DM to reduce future complications including amputations.

The present study failed to show significant correlation between total SDSCA score and HbA1c levels. However, Lin et al. (2016) reported that patients’ (3–65 years old) level of diabetes education, insulin injection regimen and HbA1c were independently associated with total SDSCA score. One study from Taiwan which assessed the adherence behaviours in T1DM patients aged 10–18 years found that the adherence behaviours in this population were poor. Similar to our study, the adherence behaviours in their study were not correlated with HbA1c levels (Chang et al., 2007).

After looking at the subcategory individually, our study showed that diet has significant association with HbA1c level. This finding is similar to a much smaller study which also showed that only diet self-practice had contributed significantly to diabetes control (Bujang et al., 2013). Dietary modification especially in T2DM patients has been shown to alter glycaemic control including inducing remission and delaying introduction of medications (Esposito et al., 2014; Taheri et al., 2020).

Another study also found that adherence to SMBG was significantly higher in participants with HbA1c less than 7.5% than in those with higher HbA1c (Lin et al., 2016). Other studies have also shown that the frequency of SMBG is associated with better HbA1c levels (Karter et al., 2001; Schneider et al., 2007). The fact that most of these studies were performed in adult population may lead to the different finding obtained between SMBG frequency and glycaemic control compared to our study. Although, one study did report similar finding of no correlation between SMBG and glycaemic control in their population (Ashur et al., 2016).

A recent study from Iran had looked at adolescent group between the age of 12 and 18 years with T1DM. They investigated the relationship of alexithymia and attachment with self-care and blood glucose level in adolescents with T1DM. Results suggested that, in a gender-specific pattern, alexithymia and attachment could affect self-care and blood glucose level in adolescents with T1DM (Shayeghian et al., 2020). Research on gender difference may be beneficial to plan for better future management of diabetes among children and adolescents.

The importance of self-care management can also be seen from the report by the other group of researchers. One study reported on the Self-Management and Research Technology (SMART) pilot project, which was a text message-based diabetes management program in adolescence. The outcome of the project showed that those with higher response rate were associated with improved average blood glucose levels and SMBG frequency (Herbert et al., 2016).

Our study’s strength is that the study is a multi-centre study involving two paediatric endocrine centres in the country. To date, there are very scarce data among children and adolescents either among T1DM or T2DM available in the current literature to provide us with a better understanding on the self-care and glycaemic control. We are also the first to report on both types of DM among paediatric population in the country. Since Malaysia is a multi-racial country, our noticeable advantage is also from having subjects from different ethnicities included into the study.

Study limitations

There are some perceived limitations of our current study. The questionnaire used in this study assessed self-care activities of diabetic patients in a given week. Self-report, although by far the most practical approach to the assessment of self-care, can be limited by recall bias. Furthermore, the fact that this study is cross-sectional, it may not give information on the self-care changes over time since the temporal link cannot be properly determined. Another point to note is that the current study has more T1DM patients than T2DM. However, the pattern is explainable by T1DM being certainly more common than T2DM in children as opposed to in adults. Future research to include more T2DM participants is helpful to better understand this group.

Implications for practice

Self-care activities are a vital part of diabetes management in patients. This study highlights that effort should be made to encourage better self-care behaviour among children and adolescents with diabetes. SDSCA questionnaires can be used as a tool to look at self-care behaviour among diabetes patients in clinical practice. Patients with poor self-care activities can be targeted during clinic visits and given extra education to improve care with the hope to improve glycaemic control and prevent complications.

Conclusion

In conclusion, diabetes self-care activities among our diabetic children and adolescents are still suboptimal and need further improvement. Self-care activities on blood glucose testing are significantly better in T1DM than T2DM due to more diligent blood glucose testing in T1DM patients. Only the diet subcategory of the SDSCA score correlated well with glycaemic control (HbA1c). Further research in this field is therefore required to better understand self-care behaviour in this adolescent population and ultimately reduce long-term complications associated with poor glycaemic control.

Footnotes

Acknowledgements

The authors would like to sincerely acknowledge late Professor Fatimah Harun for her scientific contribution in the earlier part of the study. Furthermore, the authors would also like to acknowledge the study participants from both centres, UiTM and UMMC, for their commitments during the conduct of this study.

Author contributions

NSMN performed the literature search, involved with sample collection, analyzed the data and authored the manuscript. NSMN and MYJ were responsible for the research methodology. AAZ and MYJ were involved with sample collection and analysis of data. All authors worked together in authoring and improving the manuscript and gave approval of the submitted and published versions.

Declaration of conflicting interests

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

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

Author’s note

The initial part of the study has been presented as an oral presentation at the 18th AFES Congress 2015 and is available as a conference abstract in the “Journal of the ASEAN Federation of Endocrine Societies: Proceedings of the 18th AFES Congress 2015.” The present full manuscript is not under consideration for publication anywhere else.

ORCID iD

Noor S Mohd Nor

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