The association between parental oral health literacy, socio-demographic characteristic, patient factors and caries status of paediateric cancer patient: a cross-sectional study
Highlight box
Key findings
• The presence of dental caries in children and adolescents with cancer was significantly correlated with younger age, infrequent toothbrushing, frequent sugar intake, and symptomatic dental referral following cancer diagnosis.
What is known and what is new?
• High caries prevalence was reported among children and adolescent patients with cancer.
• More than half of the parents have inadequate oral health literacy (OHL), but this was not significantly associated with the child’s caries status.
What is the implication, and what should change now?
• Caries status of paediatric cancer patients is not significantly associated with parental OHL; therefore, improving parental OHL may not be sufficient to improve caries status.
• A comprehensive and multidisciplinary approach is required: early referral to the paediatric dental team upon cancer diagnosis, systematic recall, and application of a caries prevention regime must be implemented and reinforced regularly.
Introduction
Dental caries remains a significant global oral health issue, despite being largely preventable (1). In Malaysia, the National Oral Health Survey documented a decline in caries prevalence among children from 1997 (permanent teeth: 60%; primary teeth: 87.1%) to 2017 (permanent teeth: 30%; primary teeth: 71.3%) (2). While this trend appears promising, the National Oral Health Plan’s target of achieving a 50% caries-free rate among 6-year-olds by 2020 remains unmet (3). Najihah et al. project that this goal can only be reached by 2030 (4). Contributing risk factors for dental caries in children include low oral health literacy (OHL) among parents/caregivers and the presence of special healthcare needs (1).
OHL is defined as “the degree to which individuals can obtain, process, and understand basic oral health information and services needed to make appropriate health decisions” (5). OHL encompasses more than just the ability to read dental brochures, attend appointments, and follow prescribed instructions; it is crucial for translating dental information into effective oral health behaviours (6). A local study indicated that high OHL levels in Malaysia are generally restricted to certain groups, such as employed parents, individuals with higher educational attainment, and mothers (7). This highlights the urgent need to enhance OHL among the general population to improve oral health outcomes, particularly in children (1,8).
The impact of poor oral health on the quality of life (QoL) in healthy children is well-documented, but it can be even more severe for those with special healthcare needs, such as paediatric cancer patients (PCPs) (9). Although childhood cancer represents less than 1% of all new cancer cases annually, it remains a major cause of child mortality in Malaysia, with incidence rates on the rise (10,11). The most common cancers in children (ages 0–14 years) include leukaemia and brain/central nervous system (CNS) tumours, while adolescents (ages 15–19 years) commonly face brain/CNS tumours and lymphoma (11). PCPs often experience nausea, vomiting, dry mouth, altered salivary consistency, taste disturbances, and mucositis as side effects of cancer treatment. These conditions can cause pain while eating solid foods, leading to a preference for soft, mushy, and sugary foods and drinks that are cariogenic (12,13). Additionally, younger PCPs may have frequent bottle-feeding and consume sucrose-containing syrup medications, further increasing their caries risk (14-16). Maintaining good oral hygiene can be challenging due to frequent episodes of acute oral pain (17). Extended hospital stays also complicate attendance at dental appointments, and some dentists may hesitate to provide treatment due to unfounded fears of severe infection or bleeding (18).
Evidence indicates that PCPs generally experience higher caries rates compared to healthy children (15,19,20). However, some studies have reported better oral health among PCPs, with lower caries prevalence, attributed to adherence to oral care protocols during treatment (21,22). These conflicting findings underscore the need for further research.
There remains a notable gap in the literature regarding OHL among parents or caregivers of children with cancer. Therefore, this study aimed to examine the association between parents’ or caregivers’ OHL and PCPs’ caries status. Additionally, it sought to examine how parents’ sociodemographic characteristics, patients’ clinical factors, and oral health behaviours influence caries status. We hypothesised that the caries prevalence among this group is high as compared to the non-oncological population, and parental OHL and socioeconomic status, the patient’s clinical profile and oral health behaviour are significantly associated with dental caries prevalence in this population. We present this article in accordance with the STROBE reporting checklist (available at https://tp.amegroups.com/article/view/10.21037/tp-2026-1-0041/rc).
Methods
Study design and ethical approval
The study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. The study was approved by the Research and Ethics Committees of The National University of Malaysia (UKM PPI/111/8/JEP-2020-621, 4th November 2020), and Ministry of Health, Malaysia (KKM/NIHSEC/P20-1841[11], 14th September 2020). Informed consent was obtained from all patients’ guardians involved in the study.
Study setting, sampling and sample size calculation
A cross-sectional study was conducted from March to December 2021 at the Paediatric Oncology Units of Tunku Azizah Hospital, Kuala Lumpur and Chancellor Tuanku Mukhriz Hospital, The National University of Malaysia Medical Centre, Kuala Lumpur in Kuala Lumpur, Malaysia. The study targeted 230 parent-child pairs using convenience sampling.
The sample size calculation was based on the formula:
where, N = sample size, Z = statistics for confidence level [set at 1.96 corresponding to 95.0% confidence interval (CI)], d = degree of accuracy desired (error margin), P = proportion of the population.
Based on a reported proportion of 43.9% of parents with inadequate OHL (23), with a precision of 7%, a 95% confidence interval, and an additional 10% adjustment for non-response, a sample size of 230 PCPs was obtained.
Study population and recruitment
Children between 4 and 17 years old who were diagnosed with cancer, able to read and had no cognitive impairment, along with their primary caregivers, were approached to take part in this study after receiving a detailed explanation of the study procedures. The primary caregiver was defined as the individual mainly responsible for the child’s daily care. Information leaflets outlining the study objectives and data collection methods were provided to parents/guardians in both Malay and English. Children and adolescents with cancer, along with their caregivers, who provided written informed consent and, where applicable, child assent, were recruited. Those who were medically unstable or highly uncooperative during examination were excluded from the study.
Data collection
A single calibrated examiner (A.A.) with 9 years of clinical experience conducted all examinations. Before the study, calibration was performed with 25 children in the paediatric dental clinic, using a paediatric dental specialist as the gold standard to ensure diagnostic consistency. The examiner’s intra-examiner reliability was assessed by re-examining these children after 2-weeks. The inter- and intra-examiner reliability for caries [Decayed, Missing, Filled Teeth (DMFT)/decayed, missing, and filled teeth (dmft)] showed high agreement, demonstrating kappa scores of 0.91 and 1.0 respectively.
Data collection occurred in three phases
Initial phase
Details of the PCPs were obtained from medical records. A structured face-to-face interview was conducted with primary caregivers to gather sociodemographic data and information on the children’s oral health behaviours.
Second phase
The caregivers completed a self-administered questionnaire to assess their OHL. It was measured using the validated Malay version of the 14-item Health Literacy in Dentistry questionnaire (M-HeLD-14), which has demonstrated good internal consistency (Cronbach’s alpha =0.89) (24). The OHL scores were categorised into inadequate (score <51.0) and adequate (score ≥51.0), based on a previously established cutoff point (25).
Final phase
Clinical oral examinations were conducted. Caries experience was recorded using the DMFT/dmft indices as per the WHO Oral Health Surveys guide. The indices measure decayed teeth (D/d), missing teeth due to decay (M/m), and restored teeth due to decay (F/f), with scores ranging from 0 to 28. Lowercase letters indicate deciduous teeth (dmft), and uppercase letters indicate permanent teeth (DMFT) (26). Examinations were performed using disposable plane mouth mirrors and blunt probes under portable artificial light. For clinic settings, the children were examined in a chair, while bedside examinations were conducted for hospitalised patients.
Statistical analysis
Initial phase
Descriptive statistics (frequencies and percentages) summarised categorical variables, while normally distributed continuous variables were reported as means with standard deviations. Non-normally distributed or ordinal variables were presented as medians with interquartile ranges (IQRs).
Second phase
OHL scores from the M-HeLD-14 questionnaire were analysed by dichotomising them into inadequate and adequate categories. Bivariate associations between sociodemographic factors and OHL scores were examined using the Mann-Whitney test for two-group comparisons and the Kruskal-Wallis test for multiple-group comparisons.
Final phase
Binary logistic regression analysis determined associations between parental factors (sociodemographic and OHL) and patient factors (sociodemographic, clinical, and oral health behaviours) with the caries status of PCPs. The dependent variable was the presence of caries (DMFT/dmft ≠ 0). Initially, categorical predictors such as PCP’s age group and treatment phase were converted to continuous variables. Variables related to dental team referral and follow-up were excluded due to differences in sample size.
Multiple logistic regression analyses were performed using both backward and forward stepwise (conditional) methods. Initially, crude (unadjusted) odds ratios were reported. Variables showing a significant correlation with caries, indicated by a P value less than 0.25 from simple logistic regressions, were included as independent variables in the multiple logistic regression models. To identify the best-fitting model, all potential interactions among independent variables were tested to control for confounders. The final model was selected based on its ability to identify potential risk factors for caries. The significance of each variable was assessed through preliminary modelling, and all two-way interactions were reviewed. Multicollinearity was evaluated using the variance inflation factor (VIF). The final model’s fit was assessed with the Hosmer-Lemeshow Goodness-of-Fit test, while its performance was further evaluated using a classification table and the area under the receiver operating characteristic (ROC) curve. The adjusted odds ratios and 95% CIs for each potential risk factor were calculated, with P values <0.05 considered statistically significant. All analyses were conducted using IBM SPSS Statistics version 23.
Results
Sociodemographic factors and clinical profiles of PCPs
Of the 230 PCPs approached for participation, 212 (92%) were successfully recruited. A total of 18 PCPs were excluded due to incomplete data. As shown in Table 1, the majority of participants were male (57.5%) and were diagnosed with cancer at age 6 years or younger (53.8%). The median age of the participants was 8 years, with an IQR of 6 years. The median time elapsed from cancer diagnosis to the current dental examination was 1 year (IQR, 2.75 years). The most common diagnosis among the PCPs was leukaemia (62.7%), followed by CNS neoplasms (10.6%), lymphoma (8.3%), neuroblastoma and other peripheral nerve cell tumours (6.6%), malignant bone tumours (3.8%), and other types (7.6%). More than half of the participants (52.7%) were undergoing ongoing cancer treatment, with the majority receiving single modality therapy (83%), while 17.0% were treated with multimodal therapy.
Table 1
| Variables (N=212) | Values |
|---|---|
| Age, years | 4–18; 8 [6] |
| 4–6 | 71 (33.5) |
| 7–12 | 98 (46.2) |
| 13–18 | 43 (20.3) |
| Gender | |
| Male | 122 (57.5) |
| Female | 90 (42.5) |
| Types of cancer | |
| Leukaemia | 133 (62.7) |
| Central nervous system neoplasms | 23 (10.8) |
| Lymphoma | 18 (8.5) |
| Neuroblastoma & other peripheral nervous cell tumours | 14 (6.6) |
| Malignant bone tumours | 8 (3.8) |
| Soft tissue sarcomas & others | 6 (2.8) |
| Liver tumours | 4 (1.9) |
| Nephroblastoma & other nonepithelial renal tumours | 3 (1.4) |
| Germ cell & gonadal tumours | 2 (0.9) |
| Retinoblastoma | 1 (0.5) |
| Age of diagnosis, years | 1–16; 6 [6] |
| >6 | 98 (46.2) |
| ≤6 | 114 (53.8) |
| Phase of treatment, years | 0.04–12; 1 [2.75] |
| Ongoing treatment | 118 (55.7) |
| Completed treatment >6 months | 57 (26.9) |
| Completed treatment ≤6 months | 37 (17.5) |
| Treatment | |
| Single modality therapy (chemotherapy/radiotherapy/surgery) | 176 (83.0) |
| Multimodal therapy (chemotherapy/radiotherapy/surgery and/or hematopoietic stem cell transplantation) | 36 (17.0) |
Data are presented as range; median [interquartile range] or n (%).
Oral health behaviours of PCPs
Table 2 outlines the oral health behaviours of the study participants. A majority of the PCPs reported brushing their teeth at least twice daily (58%) and using fluoridated toothpaste (92%). However, 62.3% reported consuming cariogenic foods and beverages more than three times daily between meals. Following their cancer diagnosis, fewer than half of the participants (47.6%) were referred for dental care. Among those referred, the primary reasons were caries (36.6%), routine dental check-ups (32.7%), mucositis (24.8%), bleeding (4.0%), and loose teeth (2.0%). Notably, 69.3% of the participants had no subsequent follow-up. Additionally, no further data were available regarding whether the lack of follow-up was due to default or to the absence of follow-up appointments.
Table 2
| Variables | Values (N=212), n (%) |
|---|---|
| Frequency of brushing | |
| ≥2 times daily | 123 (58.0) |
| ≤1 time daily | 89 (42.0) |
| Types of toothpaste | |
| Fluoridated toothpaste | 195 (92.0) |
| Non-fluoridated toothpaste/no toothpaste | 17 (8.0) |
| Frequency of snacking | |
| ≤3 times daily | 80 (37.7) |
| >3 times daily | 132 (62.3) |
| Referral to the dental team after cancer diagnoses | |
| No | 111 (52.4) |
| Yes | 101 (47.6) |
| Reason for referral (n=101) | |
| Caries | 37 (36.6) |
| Dental check-up | 33 (32.7) |
| Mucositis | 25 (24.8) |
| Bleeding | 4 (4.0) |
| Loose teeth | 2 (2.0) |
| Follow-up after referral (n=101) | |
| No | 70 (69.3) |
| Yes | 31 (30.7) |
Oral health status of PCPs
Table 3 presents the distribution of dental caries among PCPs by age group. Overall, the prevalence of caries in this population was 52.8% (95% CI: 46.06–59.61%), with a median DMFT/dmft score of 3 (IQR, 7). Caries prevalence varied significantly by age group, with the highest rates observed in the 7–11-year-olds cohort (63.3%), followed by 4–6-year-olds (54.9%) and 12–18-year-olds (37.1%). A Pearson chi-square test confirmed a significant association between age and caries distribution (P=0.007), indicating that the prevalence of dental decay differs across developmental stages. The decayed component (D/d) of the DMFT/dmft index reached approximately 70%. Conversely, the Total Care Index, which is represented by the proportion of filled teeth (F/f) relative to the total DMFT/dmft index, is notably low at 16.6%.
Table 3
| Age group, years | Participants | Caries |
|---|---|---|
| 4–6, n (%) | 71 (33.5) | 39 (54.9) |
| 7–11, n (%) | 79 (37.3) | 50 (63.3) |
| 12–18, n (%) | 62 (29.2) | 23 (37.1) |
| Total, n (%) | 212 (100.0) | 112 (52.8) |
| 95% CI, % | 46.056–59.605 | |
| χ2 [df] | 9.75 [2] | |
| P | 0.007 |
CI, confidence interval.
Influence of sociodemographic characteristics on parental OHL
A significant portion of the parents/caregivers of paediatric patients (61.3%) demonstrated inadequate OHL, with a median score of 48 (IQR, 16) out of a possible 56. Table 4 presents the distribution of parents’ sociodemographic characteristics with their OHL scores. Parents’ ages ranged from 20 to 56 years, with a mean age of 39.7±6.35 years. The majority were middle-aged adults (87.3%), and 73.6% of the participants were mothers. Participants were stratified by household income by using the national B40 threshold of Malaysian Ringgit (RM) 3,856 (27) to evaluate the association between socio-economic status and caries prevalence. A total of 60.4% of parents earned less than RM 3,856 per month. For educational level, they were classified into primary, secondary and tertiary categories, consistent with the sociodemographic stratification used in the National Health and Morbidity Survey (28). In terms of educational attainment, 46.2% of parents had at least a diploma or higher (tertiary education), while 45.8% had completed secondary education and 8% had only completed primary education.
Table 4
| Variables | Values | OHL score | Z†/ꭓ2 [df] | P value |
|---|---|---|---|---|
| Age, years | 20–56 (39.7±6.35) | 1.14 [2]‡ | 0.57 | |
| Young adult (18–30 years) | 17 (8.0) | 52 [11] | ||
| Middle adult (31–50 years) | 185 (87.3) | 48 [16] | ||
| Senior adult (51–60 years) | 10 (4.7) | 43.5 [19] | ||
| Gender | −1.05† | 0.29 | ||
| Female | 156 (73.6) | 47.5 [17] | ||
| Male | 56 (26.4) | 49 [12] | ||
| Monthly household income | −4.67† | <0.001* | ||
| < RM 3,856 | 128 (60.4) | 45.5 [21] | ||
| ≥ RM 3,856 | 84 (39.6) | 52 [9] | ||
| Education level | 46.77 [2]‡ | <0.001* | ||
| Primary | 17 (8.0) | 20 [26] | ||
| Secondary | 97 (45.8) | 46 [19] | ||
| Tertiary | 98 (46.2) | 52 [8] |
Data are presented as range (mean ± standard deviation), n (%) or median [interquartile range]. *, P<0.05. †, Mann-Whitney test; ‡, Kruskal-Wallis test. df, degree of freedom; M-HeLD-14, 14-item Health Literacy in Dentistry questionnaire; OHL, oral health literacy; RM, Malaysian Ringgit.
Two variables were significantly associated with higher OHL scores: monthly household income and education level (P<0.001). Parents with a monthly income of RM 3856 or more and those with a tertiary education achieved higher OHL scores, indicating fewer difficulties with oral health-related tasks. Conversely, age and gender were not significantly associated with OHL scores (P>0.05).
Associations between patient and parental factors, and caries status in PCPs
Logistic regression analysis was used to evaluate the association between patient and parental factors on PCPs’ caries status, as detailed in Table 5. The study revealed several significant factors associated with dental caries:
- Age: younger patients had a higher likelihood of experiencing dental caries [odds ratio (OR) 2.785; 95% CI: 1.419–5.468; P=0.009].
- Brushing frequency: patients who did not brush their teeth or brushed only once daily were more likely to have dental caries (OR 2.606; 95% CI: 1.398–4.855; P=0.007).
- Cariogenic diet: frequent snacking on cariogenic foods was strongly associated with an increased odds of dental caries (OR 3.324; 95% CI: 1.758–6.287; P<0.001).
- Referral timing: patients referred to a dentist only after a cancer diagnosis showed a greater frequency of dental caries (OR 2.556; 95% CI: 1.372–4.761; P<0.001).
Table 5
| Variables | OR (95% CI) | |
|---|---|---|
| Unadjusted | Adjusted† | |
| PCP factors | ||
| Sociodemographic and clinical factors | ||
| Age, years | ||
| 4–11 | 2.785 (1.419–5.468)* | |
| 12–18 | (ref) | |
| Gender | ||
| Male | (ref) | |
| Female | 0.907 (0.465–1.769) | |
| Types of cancer | ||
| Leukaemia | (ref) | |
| Central nervous system neoplasms | 3.493 (0.708–7.236) | |
| Lymphoma | 1.69 (0.600–4.783) | |
| Neuroblastoma & other peripheral nervous cell tumours | 1.116 (0.167–7.439) | |
| Malignant bone tumours | 3.450 (0.497–3.941) | |
| Others (soft tissue sarcomas, liver tumours, nephroblastoma and other nonepithelial renal tumours, germ cell & gonadal tumours, and retinoblastoma) | 2.08 (0.490–7.975) | |
| Duration of treatment | 1.009 (0.997–1.021) | |
| Treatment | ||
| Single modality therapy | (ref) | |
| Multimodality therapy | 1.239 (0.677–7.403) | |
| Oral health behaviours | ||
| Frequency of daily toothbrushing | ||
| ≥2 times | (ref) | (ref) |
| ≤1 time | 2.472 (1.318–4.639)* | 2.606 (1.398–4.855)* |
| Types of toothpaste | ||
| Fluoridated toothpaste | (ref) | |
| Non-fluoridated toothpaste/no toothpaste | 1.844(0.520–6.545) | |
| Frequency of snacking | ||
| ≤3 times | (ref) | (ref) |
| >3 times | 3.469 (1.821–6.610)* | 3.324 (1.758–6.287)* |
| Referral to the dental team after cancer diagnoses | ||
| No | (ref) | (ref) |
| Yes | 2.570 (1.377–4.797)* | 2.556 (1.372–4.761)* |
| Parent factors | ||
| Age | 1.006 (0.945–1.071) | |
| Monthly household income | ||
| < RM 3,856 | 1.172 (0.523–2.624) | |
| ≥ RM 3,856 | (ref) | |
| Educational level | ||
| Primary | 0.492 (0.122–1.989) | |
| Secondary | 0.978 (0.496–1.930) | |
| Tertiary | (ref) | |
| OHL | 0.638 (0.328–1.241) | |
†, the backward multiple logistic regression model is reasonably fitted with the Hosmer-Lemeshow goodness-of-fit. The full model containing all predictors was statistically significant, χ2=41.058, df=4, N=212, P<0.001. The model explained between 17.6% (Cox and Snell R square) and 23.5% (Nagelkerke R squared) of the variance in caries prevalence and correctly classified 67.5% of cases. *, significant level is P<0.25 for simple logistic regression and P<0.05 for multiple logistic regression. CI, confidence interval; df, degree of freedom; OHL, oral health literacy; OR, odd ratio; PCP, paediatric cancer patient; RM, Malaysian Ringgit.
However, parental OHL was not significantly associated with PCPs’ caries status (OR 0.638; 95% CI: 0.328–1.241; P=0.07). Additionally, other factors such as gender, cancer type, treatment modalities, and the use of fluoridated toothpaste did not show a significant association with caries status in these patients. Despite the significant influence of household income and educational level on parental OHL scores, these factors did not significantly affect PCPs’ caries status.
Discussion
Dental caries status
While Ministry of Health Malaysia prioritises children with chronic diseases, including those with cancer, as having Special Health Care Needs (SHCN) (29), this study identified a significant caries prevalence of 52.8% within this cohort. This figure sits between the national averages for primary (71.3% in 6-year-olds) and secondary school-aged children (33.3% in 12-year-olds), suggesting that ‘priority group’ status has not yet translated into lower disease rates (30). Consequently, these patients remain highly susceptible to dental decay throughout their oncological journey, highlighting a gap between national policy and clinical outcomes.
The median dmft score was 3.5 (IQR, 7.0), slightly higher than a previous study that reported a median dmft score of 2.7 (IQR, 3.3) (31). Of greater clinical significance was the high proportion of untreated disease: the decayed component (D/d) accounted for nearly 70%, while the total care index among PCPs was markedly low at 16.6%. These findings underscore a substantial burden of untreated dental caries and a significant gap in restorative care for this population. The prevalence of dental caries was also higher among younger PCPs than among older ones. The data suggest that children aged 7 to 11 years old are at greater risk for caries. This finding aligns with another local study, which reported a higher prevalence of caries among healthy children aged 7 to 9 years compared to those aged 10 to 11 years (32). The lower caries prevalence observed in older children may be attributed to the natural transition from primary to permanent dentition. During this developmental stage, carious primary molars, which often account for a high proportion of the dmft index in younger children, are exfoliated and replaced by newly erupted, healthy premolars teeth. Conversely, prior research has reported a lower caries prevalence in PCPs compared to healthy peers (22). These favorable outcomes may be attributed to the implementation of stringent oral hygiene protocols and the consistent reinforcement of these practices during oncological treatment. Consequently, maintaining a rigorous oral hygiene regimen is essential to foster optimal oral health behaviors among PCPs. Similarly, this study also found that primary dentition was more significantly affected by caries than permanent dentition, which correlates with the patients’ age distribution. This finding is consistent with previous research that identified a significant association between caries and primary teeth, but not permanent teeth (33). Several cross-sectional and case-control studies have similarly reported higher caries experience in primary teeth compared to permanent teeth among PCPs with leukaemia (34,35).
Significant correlation related to the types and number of treatments was also examined. Hutton et al. observed higher caries rates in PCPs with neuroblastoma compared to those with other cancers such as Wilm’s tumour, rhabdomyosarcoma, lymphoma, and solid tumours (36). Additionally, a previous study indicated significant differences in caries experience based on treatment type: PCPs who received radiation had the highest DMFT scores (8.4), followed by those who received radiotherapy to the head and neck region (7.9), transplant patients (6.9), and those who underwent chemotherapy only (5.9) (37). The combination of chemotherapy and radiotherapy was associated with an increased risk of dental development defects compared to single therapies (37,38). However, this study did not evaluate these factors. It is also worth noting that some PCPs classified as receiving single treatments had multiple planned procedures, but these had not commenced by the time of the oral examination.
Oral health behaviours of patients with cancer
Maintaining good oral health behaviours is crucial for overall oral health. However, this study highlights that toothbrushing is not always considered essential among PCPs. Some patients avoid brushing their teeth due to concerns about bleeding and the risk of bacteraemia, despite evidence refuting the validity of these concerns. This avoidance can negatively impact oral health (39,40). It is important to reinforce the practice of daily toothbrushing, ideally two to three times a day, using a soft nylon toothbrush, regardless of the patient’s haematological status (41). Thrombocytopenia should not be a barrier to maintaining good oral hygiene, as patients can brush their teeth without significant bleeding at various platelet levels. For those experiencing moderate to severe mucositis, where even a soft nylon toothbrush is intolerable, alternatives such as foam brushes or extra-soft brushes soaked in chlorhexidine can be used temporarily until they can resume regular brushing (41). Emphasising the importance of toothbrushing is vital for maintaining oral health in patients with cancer.
Frequent snacking can exacerbate oral health issues by promoting the metabolism of sugars by cariogenic bacteria, which produce acidic by-products that lower salivary pH to critical levels (below pH 5.5) for extended periods (42-44). It takes 30 to 40 minutes for the mouth to neutralise these acids (42,43). Our study found that patients with cancer consumed sweetened beverages and snacks nearly twice as often as reported in previous research (62.3% vs. 30.0%) (21). Frequent snacking thus contributes to the demineralisation of hard tissues, increasing caries risk.
Early oral assessment and treatment are essential for all newly diagnosed cancer patients before starting immunosuppressive therapy. This should be managed on a case-by-case basis to avoid unnecessary treatment delays or complications (41). However, our study revealed that less than half of the patients were referred to a dental team after their cancer diagnosis, a finding consistent with previous studies. Research in Brazil, India, and Sudan reported a significant proportion of patients with cancer who had never seen a dentist (41.1%, 87.0%, and 93.1%, respectively) (21,39,45). Similarly, 84.8% of 198 medically compromised children in Turkey had never visited a dentist (46). The study did not specify whether these patients had never visited a dentist at any time or only since their cancer diagnosis. The lower referral rates observed in this study were likely influenced by the peak of the coronavirus disease 2019 (COVID-19) pandemic. Additionally, a lack of awareness among parents about the importance of dental check-ups could also be a contributing factor.
Regarding the reasons for dental referrals, a study conducted in Saudi Arabia found that medically compromised children were typically referred by their primary care physicians for caries treatment or for “dental clearance” before heart surgery, organ, or bone marrow transplants (9). Similarly, in another study, none of the medically compromised children were referred for routine dental examinations; instead, referrals were made for comprehensive dental care, oral cavity rehabilitation, or emergency treatment (47). In our study, while 32.7% of PCPs received a proactive referral for a routine dental check-up following cancer diagnosis, the majority were referred to address urgent dental complaints or complications from cancer therapy. Early referral for routine dental check-ups would facilitate the early detection of dental diseases and potentially less invasive treatments, reducing the risk of dental treatment complications. Personalised preventive strategies and anticipatory guidance regarding the oral effects of cancer could also help mitigate future dental issues (41).
Parental OHL
The low OHL among parents in this study aligns with previous research, which reported inadequate and marginal OHL among parents of healthy children (7). Conversely, another study found that 72% of parents of healthy preschool children had high OHL (48). However, these findings should be interpreted cautiously, as different tools with varying cut-off points were used to measure OHL. The former study employed the Oral Health Literacy Instrument (OHLI-M) (7), which assesses reading comprehension and numeracy, while the latter used the Rapid Estimate of Adult Literacy in Dentistry (REALD-99), based on word recognition (48). Participants in the REALD-99 study had to pronounce a list of 99 oral health-related words arranged by increasing reading difficulty. Notably, the study did not specify whether this OHL tool had been validated (48).
The current study hypothesised that parents’ sociodemographic characteristics might influence their OHL. One of the factors examined was parental age, which ranged from 20 to 56 years. The study found that younger parents tended to have better OHL than older parents, though the difference was not statistically significant. This may be attributed to younger parents having greater access to a diverse range of information sources. However, some studies have found that older parents have significantly better OHL (8,49,50).
Comparing OHL between mothers and fathers is challenging, as mothers often participate more in such studies due to their role as primary caregivers (8). In this study, mothers accounted for 73.6% of participants. Interestingly, although fathers scored higher on OHL, the difference was not significant. In contrast, other studies have found that mothers have significantly better OHL than fathers (7,8). Educational attainment also plays a key role in enhancing parental knowledge and understanding of dental health. This study found a significant decline in parental OHL with decreasing educational levels, mirroring findings from earlier studies (7,51). Additionally, higher educational attainment is often linked to higher household income, and parents with a monthly income below RM 3,856 had significantly lower OHL than those in higher income brackets, consistent with previous findings (7).
Among the seven domains of the HeLD-14 questionnaire, the ‘Economic Barrier’ domain had the lowest median score. The bivariate analysis showed that parents with a household income of ≥ RM 3,856 had significantly higher OHL, though the multivariate analysis did not find income to be a significant factor for caries experience. This is consistent with a local study that found no significant association between household income and dental caries (52). Nonetheless, bivariate analysis indicates that improving education and income can substantially enhance parental OHL.
Associations between parental factors, OHL, and PCPs’ caries status
Children rely on parental support to maintain optimal oral health, and parental OHL is considered crucial in achieving good oral health for children. Several studies have reported a significant association between caregivers’ OHL and their children’s oral health status (7,8,49,50). However, the current study found no significant link between parental OHL and the dental caries status of PCPs. A previous cross-sectional study also found no association between caregivers’ OHL and the oral health-related quality of life (OHRQoL) of preschool children, although dental caries and having a higher number of siblings were shown to negatively impact OHRQoL (53). Similarly, while a mother’s higher educational level positively impacted OHRQoL, this study found no significant association between parental education levels and PCPs’ caries status.
Other factors significantly associated with PCPs’ dental caries status in this study included younger age (4 to 11 years), infrequent tooth brushing (once daily or less), frequent snacking on cariogenic foods, and reactive rather than proactive dental referrals, specifically those delayed until the onset of acute complaints or complications following cancer therapy. The lack of association between parental OHL and caries status in PCPs highlights the need for a more comprehensive approach to improving oral health outcomes. This includes early referral to a paediatric dental specialist after cancer diagnosis, regular dental checkups, and reinforcing oral health education—particularly regarding diet and oral hygiene—at every visit. Regular application of professional topical fluoride, at least every six months, would also benefit PCPs.
The full regression model, incorporating relevant predictors, explained 23.5% of the variation in caries status, suggesting that improvements in these factors could lead to a 23.5% reduction in caries. Despite variations in study design and assessment methods among comparable studies, which limit direct comparisons, the findings of this study indicate that the National Oral Health Goals have not yet been achieved. These goals aimed to have 50% of 6-year-olds, 70% of 12-year-olds, and 50% of 16-year-olds be caries-free by 2020. The goal for 6-year-olds was also to achieve a mean dmft (decayed, missing, and filled teeth) score of less than or equal to 2, yet the PCPs in this study reported more than twice that value (2,3).
Strengths and limitations of the study
To the best of our knowledge, this was the first study in Malaysia that assessed parental OHL and its relationship with caries status in PCPs. Although the relationship was not found to be significant, it would be prudent to comment on the instrument used to measure parental OHL, which was the validated Malay version of the 14-item Health Literacy Dental Scale (HeLD-14) (24,26). It is easy to use, culturally sensitive, low-cost and has better reliability compared to other existing oral health tools in Malay (54). The short-form Health Literacy Dental Scale (HeLD-14) was developed from the original 29-item Health Literacy Dental Scale (HeLD-29) instrument (55). The authors stated that the tool measures the ability of an individual to obtain/process or interpret and understand basic oral health information required to make the appropriate oral health-related decisions. The instrument consists of 14 questions from seven different domains, i.e., receptivity, reading, support, economic barriers, access, communication, and utilization (55). They stated that the instrument does capture the three concepts of health literacy proposed by Nutbeam (56). However, Ghaffari et al. (57) in their systematic review of the tools for OHL assessment have reported that the Health Literacy Dental Scale (HeLD-29) only assessed four dimensions (literacy, pronunciation, comprehension, and numeracy) i.e. the basic/functional health literacy (56) and lacked in the other dimensions such as interactions, information seeking and decision making/critical thinking. These three dimensions particularly address the capacity of an individual to critically analyse information and participate in activities that help to overcome structural barriers to health (57).
Malaysia is a multiracial and multilingual country. The national language is Malay, and most of the population can read and write in Malay. However, this study did not take into consideration those who were able to speak the language but could not read or comprehend the instructions or lacked the confidence to attempt the questionnaire. Furthermore, the same individuals may also be the ones who would encounter difficulty in reading and understanding written oral health information in Malay. These individuals would have been excluded from participating, otherwise, the level of inadequate OHL in the study population would have been higher.
In this study, the level of OHL was divided into two categories only based on the M-HeLD-14 weighted OHL score, i.e., inadequate (score <51.0) and adequate (score >51.5) (total score is 56). In hindsight, the range of scores between these two categories seemed quite disproportionate and did not consider those whose OHL may be ‘average’. It is recommended that future research include an intermediary level for a more refined differentiation between OHL scores.
The structured interview and self-administered questionnaires might be biased, as there is a tendency to provide socially desirable answers, which could be possible factors that mitigate the effects. In addition, the recruitment was done through convenience sampling because of the easy access to PCP in hospitals. Although the participants who attended both hospitals came from other states in Peninsular Malaysia, this study cannot be generalized to all PCP in Malaysia, as it was conducted in only two major referral hospitals. Future studies should consider a longitudinal design to obtain more substantial results. Multi-centre studies at non-healthcare facilities with healthy counterparts as the control group and extended follow-up periods are also recommended.
Conclusions
This study concludes that the caries status of PCPs is not significantly associated with parental OHL; therefore, improving parental OHL may not be sufficient to improve caries status. Instead, a more comprehensive and multidisciplinary approach is required that includes early referral to the Paediatric Dental team upon cancer diagnosis, systematic recall, and application of a caries prevention regime that comprises dietary advice, oral hygiene care, and fluoride therapy must be implemented and reinforced regularly.
Acknowledgments
The authors would like to thank all participants for their cooperation and participation in this study. Also, sincere appreciation to all doctors and nurses in the Department of Paediatric Oncology at Hospital Tunku Azizah and Hospital Tunku Ampuan Besar Tuanku Aishah Rohani for their support and assistance with this research.
Footnote
Reporting Checklist: The authors have completed the STROBE reporting checklist. Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-1-0041/rc
Data Sharing Statement: Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-1-0041/dss
Peer Review File: Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-1-0041/prf
Funding: None.
Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://tp.amegroups.com/article/view/10.21037/tp-2026-1-0041/coif). The authors have no conflicts of interest to declare.
Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. The study was approved by the Research and Ethics Committees of The National University of Malaysia (UKM PPI/111/8/JEP-2020-621, 4th November 2020), and Ministry of Health, Malaysia (KKM/NIHSEC/P20-1841[11], 14th September 2020). Informed consent was obtained from all patients’ guardians involved in the study.
Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.
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