COVID-19 was declared as a global pandemic by the World Health Organization (WHO) on 11 March 2020 (1). Up to March 2023, a total of 750 million cases have been confirmed worldwide and 6.8 million deaths reported, leading to a significant impact to the global healthcare and medical system (2). Nearly 90% of children with COVID-19 presented with mild or moderate symptoms, with no increased risk of morbidity nor mortality among children with cancer compared to the general population (3–5). However, diversion of healthcare system worldwide to cope with the pandemic has affected care for paediatric oncology patients, such as delayed presentation to hospital, interruptions in treatment protocol, shortage of blood supply, and suspensions of clinical trials for children with cancer (6–8).

In Malaysia, paediatric oncology services are only offered in dedicated centres. A great number of patients have to travel across states to the nearest oncology centre available for their treatment. During COVID-19 pandemic, patients who were newly diagnosed and receiving intensive phase of chemotherapy were greatly affected as their chemotherapy intervals were more frequent and experts were unsure whether adjustment to treatment protocols will affect the disease outcomes. Although planned treatment for children with cancer should continue to be delivered in a timely manner, a few modifications were necessary during the pandemic, considering the patients’ safety and service constraints.

COVID-19 pandemic has led to increased psychosocial stress in general population; parents of children with cancer have been reported to experience additional burden (9, 10). Various concerns were raised by parents, namely fear of COVID-19 infection compromising their child’s immune system further following intensive chemotherapy, as well as concerns regarding the risk of relapse if chemotherapy was delayed or treatment protocol was modified (11, 12). The lack of specific information on the potential threat of COVID-19 infection to children and adolescents with cancer may potentiate the stress and anxiety level among the parents. Thus, it is important to identify the parents’ anxiety and stress level to ensure that continuous open communication was made to address their concerns. In this study, we evaluated the parents’ perception towards effects of COVID-19 infection in children with cancer, determined their stress level and factors contributing to high stress level during the pandemic.

This study was carried out over a 28 months period (from 1^st September 2020 until 31^st December 2022) at three paediatric oncology centres in Malaysia – Universiti Kebangsaan Malaysia Medical Centre (UKMMC), Sarawak General Hospital (SGH) and Hospital Tunku Azizah (HTA). Parents (either mother or father) of children or adolescent (<18 years old) with cancer who were receiving treatment or follow up at one of the aforementioned centres were included in the study. Patients who were on palliative care and foreigners were excluded. Convenience sampling was employed and eligible parents were approached, either in the paediatric oncology ward or daycare when their child was admitted for chemotherapy, or in the oncology clinic for patients who have completed treatment. Written informed consent was obtained prior to recruitment. Ethics approval was obtained from the Research Ethics Committee, The National University of Malaysia (JEP-2021-028) and The Ministry of Health Medical Research Ethics Committee (MREC) of Malaysia (NMRR-20-3028-56868) prior to the study.

A total of 167 parents completed the questionnaire, of which the majority were mothers (n = 135, 80.8%). Patients’ mean age at study entry was 8.75 years (SD 4.38) (Table 1). Ninety-one (54.5%) patients were still on active treatment; fifty-nine (64.8%) patients were on intensive phase chemotherapy. Almost two-third (n = 106; 63.5%) of the patients were from the lower socio-economic group. Thirty-eight (22.7%) patients had contact with another COVID-19 patient. Majority of the parents (>80%) obtained information regarding COVID-19 infection from mass media and social networking (e.g., Facebook, Instagram, Twitter) (Table 2). However, most of the information obtained was pertaining to the general population; seventy-five (44.9%) parents knew the effects of COVID-19 infection on children diagnosed with cancer.

The COVID-19 pandemic emerged in Wuhan, China, in late 2019, leading to widespread panic and global healthcare crisis. International health organisations such as World Health Organisation (WHO) and Centres for Disease Control and Prevention (CDC) releases periodic updates during the height of the pandemic to increase public awareness regarding COVID-19 infections. Parents, especially those with children suffering from chronic illnesses, would probably be highly aware of the consequences of severe COVID-19 infection and actively seeking ways to protect their children from the infection. A study by Sabra et al. among parents of general population in Egypt, found that most of participants (86.8%) perceived COVID-19 as a serious disease and were concerned about themselves or a family member being infected with COVID-19 (16). The current study also revealed similar findings; almost all the parents (98%) perceived COVID-19 to be a danger to their child and more than 90% were worried their child will get severe complications from COVID-19 infection. A change in daily habits were observed among a majority (83.8%) of the parents to reduce the risk of getting COVID-19 infection, in line with the guidelines released by CDC and WHO to reduce transmission of COVID-19 virus (i.e., masking, physical distancing, hand hygiene) (17).

Diversion of healthcare services to handle COVID-19 patients were implemented worldwide during the pandemic. This, together with movement restriction, has necessitates adjustment of treatment protocols among paediatric oncology patients in some countries (18). Due to limited data available, clinicians were in dilemma whether to continue anticancer treatment in patients with positive COVID-19 test result (18). Risk of cancer progressing or relapse due to interruption of chemotherapy has to be weighed against the risk of severe COVID-19 disease with potentially fatal outcome. Several studies recommend a multidisciplinary decision approach on treatment postponement, modification, or continuation in these situations, taking into consideration the clinical course of COVID-19 infection as well as patients’ existing comorbidities (19–22). Although early data showed continuation of chemotherapy in paediatric cancer patients with COVID-19 infection seems possible, more data is needed before solid recommendations can be made (19, 23). In current study, only a few patients required adjustment in their treatment and follow-up plans during the pandemic. These includes postponement of chemotherapy dates for those who were on maintenance phase chemotherapy and dose reduction (one patient). High risk patients (those on intensive phase chemotherapy) were monitored for a longer duration in the hospital while awaiting count recovery prior to discharge, to minimise their risk of getting COVID-19 infection during the myelosuppressive period. Changes to treatment schedules may also be a source of stress to the parents due to the uncertainty whether it will affect their child’s disease outcome. However, due to the small numbers of patients requiring treatment adjustment, we did not perform any statistical analysis to evaluate this further.

Our study was conducted one year after the initial COVID-19 pandemic takes place. New information is released everyday by various sources, but data regarding the impact of COVID-19 infection among paediatric oncology patients remains limited (13). The current study showed less than half (44.9%) of parents knew the effects of COVID-19 infection on children diagnosed with cancer. Study by Darlington et al. during lockdown in England found that 85% of parents or caregivers of childhood cancer patients were worried about the virus and 69.6% felt that the hospital was not a safe place (11). Similarly, a study by Zucchetti et al. in Italy concluded that restrictions to hospital access in Italy during the pandemic increased parents’ psychosocial distress (12). Interestingly, in Netherlands, van Gorp et al. reported fewer caregivers of oncology children were distressed during the early phase of COVID-19 pandemic compared with pre-COVID-19 era (24). The author concluded that instant access to the psycho-oncology department and early reassuring information sharing (i.e., information that suggested that children with cancer seemed relatively unaffected by COVID-19) helped in reducing the parents’ concerns (24).

From the current study, half (54.5%) of the parents were very or extremely stressed when scored using the CSS tool. Low household income was identified as a factor contributing to high stress level among the parents. Previous study before the pandemic by Latiff et al. in one of the study centre revealed that 27.3% parents of children with leukemia had high total parenting stress score (25). However, household income was not analysed in the previous study (25). Two-third of our patients came from the lower socio-economic group who relied heavily on government assistance for hospital bill payments. As hospital social services were considered non-essential during the pandemic, delayed assessment for eligibility for aids have delayed the much-needed assistance to the poor family, possibly contributing to the higher stress level among them. Loss of job by a third of the parents during the pandemic may contribute further to the stress. Hospital social workers can play a bigger role during pandemic by engaging employment agencies as well as non-governmental organizations to identify and offer parents financial assistance and re-employment opportunities in a timely manner.

There are several limitations to our study. Firstly, COVID Stress Scales (CSS) is a new tool with no pre-defined cut-off score to determine low or high stress level. Two authors had used CSS to determine the stress level using different cut-off scores. Marija et al. performed Receiver Operating Characteristic (ROC) curve analysis and determined level above 24.5 as high stress level (specificity of 62.8%; sensitivity of 61.7%) (26). Meanwhile, Taylor et al. used latent class analyses to classify the total CSS score into 5 classes based on mean total score, ranging from low (Class 1) to high (Class 5) stress level (27). Although the CSS is reported to be comparable to another well-established questionnaire, Perceived Stress Scale (PSS), more data is needed to allow better interpretation of the scores obtained (25). Another limitation was the inhomogeneity of patients who participated in this study, with some on different phases of active treatment while others had already completed their treatment. The parents’ stress level would definitely differ between these groups. Furthermore, only one of the parents (majority were mothers, n = 135, 80.8%) answered the questionnaire. As both parents may have different stress levels and coping mechanisms, this could affect the CSS results. Lastly, as this study was conducted over a period of 2 years, the parents perception and stress level may have changed at later recruitment timepoint as the COVID-19 cases declined and national policies changed.

In this study, majority of parents of paediatric oncology patients were aware of COVID-19 infection and its risk to their children. Half of the parents had high stress level during the pandemic. Low household income was found to be associated with high stress level.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

Eligible parents were approached and written informed consent was obtained prior to recruitment. Ethics approval was obtained from the Research Ethics Committee, The National University of Malaysia (JEP-2021-028) and The Ministry of Health Medical Research Ethics Committee (MREC) of Malaysia (NMRR-20-3028-56868) prior to the study.

MA, DL and HA contributed to the conception and design of the study, data analysis, interpretation and writing of the manuscript. MA, SC, KH and BH contributed towards subjects’ recruitment and data collection. All authors contributed to the and approved the submitted version.