Evaluarea nivelului de conștientizare al părinților privind măsurile preventive pentru efectele adverse asociate corticosteroizilor în îngrijirea pediatrică

Introduction

Pediatric neurology, also known as child neurolo­gy, is a specialized branch of medicine dedicated to the diag­nosis, management and treatment of neurolo­gical con­di­tions in neonates, infants, children and adolescents⁽¹⁾. This field encompasses a broad range of disorders affecting the brain, spinal cord, peripheral nervous system, autonomic system, muscles, and blood vessels in individuals within this age group. Neurological conditions in children can be diverse, including congenital conditions, genetic disorders, traumatic injuries, infections and autoimmune diseases⁽²⁾. Many of these conditions are chronic in nature and present significant challenges not only to the patients but also to their families, often leading to prolonged and complex management.

Among the most commonly encountered neurological conditions in pediatric neurology, there are autoimmune diseases, epilepsy and inflammatory disorders of the central nervous system⁽³⁾. For these conditions, cortico­steroids have emerged as a cornerstone of treatment, due to their potent anti-inflammatory and immunosuppressive properties. Corticosteroids such as prednisolone, methylprednisolone and adrenocorticotropic hormone (ACTH) are synthetic drugs that closely mimic cortisol, a hormone naturally produced by the adrenal glands⁽⁴⁾. These medications play a critical role in controlling inflammation, modulating immune responses, and stabilizing neurological functions in pediatric patients with various neurological disorders.

Despite the significant benefits of corticosteroids in managing these challenging conditions, the long-term use, particularly doses sustained for more than six months, raises serious concerns regarding the potential for adverse effects^(5,6). Prolonged corticosteroid therapy is associated with a wide range of adverse effects (AEs) that can impact multiple organ systems, including the immune system, musculoskeletal system, ocular health, dermatological function, central nervous system, endocrine system, cardiovascular system and gastrointestinal system⁽⁷⁾. These adverse effects can be particularly pronounced in children, as they may be more vulnerable to the negative consequences of corticosteroid therapy compared to adults.

The impact of these adverse effects on the growing child’s body can be profound, leading to complications such as growth retardation, weight gain, increased susceptibility to infections, muscle weakness, hypertension, and bone health issues like osteoporosis⁽⁸⁾. Therefore, special attention is needed in pediatric neurology practice to mitigate these risks and ensure that corticosteroid therapy remains as safe and effective as possible. With many pediatric neurology patients requiring long-term corticosteroid use, a comprehensive approach to managing the therapy, including preventive strategies, is essential to minimize these harmful effects.

A key factor in achieving this goal is the level of parental awareness regarding the adverse effects of long-term corticosteroid use and the preventive measures available to mitigate these risks⁽⁹⁾. Research suggests that a lack of awareness among parents can hinder the successful prevention of adverse effects and may even contribute to the premature discontinuation of therapy, which can ultimately affect the overall management and outcomes of the child’s condition.

Given the importance of parental involvement in the ongoing care of children with neurological disorders, this study seeks to assess parental awareness of the major adverse effects associated with long-term cortico­steroid therapy, as well as their knowledge of preventive measures to reduce these risks. The study focused on parents of pediatric neurology patients at the neurology unit of the Lady Ridgeway Children’s Hospital, Sri Lanka, with the goal of identifying areas of knowledge gaps and offer valuable insights into how healthcare providers can better educate families and support the optimal management of corticosteroid therapy in pediatric neurology.

Methodology

Research approach and design

This study employs a quantitative descriptive research design. A research design can be described as a structured plan or framework that outlines the specifications and procedures for conducting and controlling a research project. Descriptive research aims to observe and describe the current state of a phenomenon with high accuracy, capturing a detailed snapshot of the situation. This design focuses on characterizing the problem by collecting data that provide an accurate profile of the target group or issue. It allows for both qualitative and quantitative data collection, making it suitable for gathering comprehensive information on attitudes, behaviors, beliefs and other variables. The advantage of a descriptive approach is that it enables researchers to collect large amounts of data, offering a broad understanding of the topic. In this study, a quantitative approach is used to gather numerical data, which can be analyzed statistically and generalized to a larger population. This design was chosen because it facilitates a systematic approach to quantifying parental awareness of adverse effects and preventive measures related to long-term corticosteroid therapy in pediatric neurology.

Research setting

The research for this study was conducted at the Lady Ridgeway Hospital for Children, located in Colombo, Sri Lanka. Established in 1895, it is the largest children’s hospital in the world, with a bed capacity of over 900. The hospital is a national referral center for pediatric care and provides essential healthcare services to the population in Colombo and its surrounding areas. As a government-funded institution, it operates under Sri Lanka’s free state healthcare policy, ensuring that all services are provided at no cost to patients. The hospital offers a wide range of specialized units, including Neurology, Cardiology, Surgery, and Intensive Care, among others, and serves as a major teaching hospital affiliated with the University of Colombo. With an outpatient attendance of over one million annually, Lady Ridgeway Hospital plays a pivotal role in providing comprehensive pediatric care and training for medical professionals in the country.

Population and sample

The population for this study refers to the total group of individuals from which the sample is drawn, representing those who share similar characteristics relevant to the research. In this case, the population consists of parents (either fathers or mothers) of children diagnosed with neurological conditions and receiving long-term corticosteroid treatment at the Neurology Unit of Lady Ridgeway Hospital (LRH). A total of 300 parents were recruited for this prospective study, which was conducted between January 5^th and March 31^st, 2024. The sample was selected using a purposive hetero­geneous sampling technique, which involves choosing individuals based on specific criteria to ensure a representative sample. This method was particularly useful in saving time and resources while ensuring the inclusion of a diverse group of parents, with varying ethnic backgrounds, income levels and education statuses, thereby enhancing the generalizability of the study’s findings to the broader population of pediatric neurology patients receiving corticosteroids.

Inclusion criteria

Only parents with children aged less than 14 years old, with a neurological condition diagnosis and on corticosteroids for long-term basis at the neurology unit, were eligible for this study.

Exclusion criteria

The exclusion criteria included parents of pediatric neurology patients with corticosteroids prescribed for short-term intervals and parents whose literacy level was poor (those who cannot read and write Sinhala, Tamil and English).

Data collection method and tools

Data collection

Data collection is a systematic process of gathering information on variables of interest in order to answer research questions, test hypotheses, and evaluate outcomes. In this study, data collection was carried out between January and March 2024 at the Neurology ward and at the Neurology clinic of Lady Ridgeway Hospital (LRH). Prior to beginning data collection, the researchers sought permission to conduct the study and then established rapport with the hospital staff and parents. This process helped to build trust and ensure that participants felt comfortable with the study. The sample was selected based on predetermined criteria, targeting parents of children under 14 years old who had neurological diagnoses and were on long-term corticosteroid therapy at the neurology unit. Once parents agreed to participate voluntarily, the informed consent was obtained before any data was collected.

The researchers employed a questionnaire for data collection, which included both primary and secondary data. The questionnaire was divided into five sections: the first section gathered socio-demographic information about the parents, while the second section contained secondary data collected from clinic records by the investigator. Sections three, four and five included questions that assessed the parents’ awareness of the adverse effects and preventive measures of corticosteroid therapy. In total, 15-20 completed questionnaires were collected each day. To ensure confidentiality and minimize bias, the participants were instructed to place their completed questionnaires in a designated file on a separate table. This process helped maintain the integrity of the data by preventing any influence on the respondents’ answers, particularly given the potential for response biases in self-reported data.

Validity and reliability of the instrument

Validity and reliability are crucial concepts in research as they enhance the accuracy and credibility of a study’s assessment and evaluation. In quantitative research, reliability refers to the consistency, stability and repeatability of results, meaning the results are considered reliable if consistent outcomes are obtained under identical conditions but different circumstances. Validity, on the other hand, refers to the extent to which a measuring instrument accurately measures what it is intended to measure. To ensure the validity and reliability of the questionnaire used in this study, the researchers took several steps. A thorough literature review was conduc­ted to understand parental awareness and other factors related to the prevention of side effects of long-term corticosteroid therapy among children with neurological disorders. The questionnaire was developed after critically analyzing previous studies. Additionally, the questionnaire was reviewed by experts in the field of pediatric neurology and, based on their feedback, necessary revisions were made. A pilot study was also conducted to identify any weaknesses in the questionnaire, which helped further refine the instrument to ensure its reliability and validity.

Limitation of data collection

Several limitations were encountered during the data collection process. One challenge was that some children did not have a specific diagnosis for their disease, making it difficult to include all eligible participants. Additionally, parents of children with more aggressive behaviors were unable to complete the questionnaire. In some cases, children were accompanied by relatives or guardians rather than their parents, and some parents who lived far away declined to participate due to concerns about the time commitment. Furthermore, there was a higher number of children on short-term corticosteroid therapy, which affected the sample’s representativeness for long-term users. However, these limitations did not significantly impact the response rate, as the researchers extended the data collection period to allow for sufficient responses, ultimately reaching sample saturation. Another limitation was the underrepresentation of fathers in the study, as their participation was much lower compared to mothers, which affected the balance of parental representation.

Ethical considerations

Ethical considerations were carefully addressed before initiating the study. Ethical approval was obtained from the Ethical Review Committee of the Lady Ridgeway Children’s Hospital, Sri Lanka, along with the necessary permission to conduct the research at the Neurology unit of LRH. Upon meeting the inclusion criteria, the participants were provided with an information letter in Sinhala, Tamil and English, ensuring they were fully informed about the study. Additionally, a consent form was given for voluntary participation, and the purpose of the study was verbally explained to the participants. The informed consent was then obtained from all participants before data collection commenced. Privacy and confidentiality were strictly maintained throughout the study; personal details were not recorded, and each participant’s data were assigned a unique code to ensure anonymity. Data collection was carried out without interfering with the participants’ daily activities, and no risks were posed to the participants. For literate individuals, an information letter containing all study details was provided, while verbal explanations were given to those who were illiterate. Contact information was also made available for participants to seek clarifications if needed. Participants were informed of their right to withdraw consent at any time, which was clearly stated in the information letter.

Data analysis

Data analysis is a critical process in research, involving the systematic examination and interpretation of collected data to address the research objectives. In this study, data were analyzed using descriptive statistics. Parental awareness was measured using a Likert-type scale, while other factors were assessed using nominal and ordinal scales, adapted from previous studies. After collecting the data, the researchers carefully processed it to prepare it for analysis. This included coding, classifying and tabulating the data to make it suitable for analysis. Data preparation was done using Microsoft Excel and the Statistical Package for the Social Sciences (SPSS) version 18. This process ensured that the data were ready for meaningful analysis to draw conclusions from the study.

Results

The questionnaire used in this study consisted of 18 questions organized under eight categories, designed to assess parental awareness regarding the prevention of steroid-related adverse effects. The findings revealed that a significant portion of parents demonstrated good awareness of certain preventive measures. For instance, 70% (n=217) of the parents knew that their child should avoid crowded places, and 67% (n=201) were aware that immediate medical advice is necessary if their child comes into contact with the chickenpox virus. Additionally, a high percentage of parents were aware of the need for medical consultation when their child experiences symptoms such as fever (91%; n=273), cough (86.3%; n=259), diarrhea (88%; n=264) and vomiting (87.7%; n=263) – Figure 1.

Furthermore, the majority of parents (81.7%; n=245) understood the importance of providing their child with plenty of vegetables and fruits. However, the study also identified a significant gap in knowledge when it came to preventing fractures. Only 29.3% (n=88) of parents were aware that vitamin D supplements should be given to help prevent fractures. These findings highlight areas of both awareness and knowledge gaps, with parents showing strong understanding in some preventive measures but lacking knowledge in others, particularly regarding the supplementation needed to prevent steroid-related bone issues.

According to the findings, the overall mean (±SD) percentage for parental awareness of preventive measures against adverse effects of corticosteroids was found to be 61.86±22.52, indicating that the general level of knowledge among parents was adequate. This result suggests that, on average, parents had a fairly good understanding of how to prevent side effects associated with corticosteroid use. To further categorize the findings, parental awareness was divided into two groups: those with good awareness (≥50%) and those with poor awareness (<50%).

The analysis revealed that a substantial majority (65.7%; n=197) of the parents demonstrated good awareness of the preventive measures necessary to manage corticosteroid side effects. This highlights that most parents were informed and had a relatively strong understanding of how to protect their children from the potential negative impacts of long-term steroid use. This percentage is a positive indication of the effectiveness of existing educational efforts, though there is still room for improvement in increasing awareness among the remaining parents, as represented by the 34.3% who showed poor awareness. The data are visually represented in Figure 2, which illustrates the distribution of awareness levels among the parents surveyed.

The overall parental awareness of preventive awareness of steroid adverse effects is statically significant.

Discussion

According to the findings of our study, sociodemographic data, monthly income (p=0.001) and adequacy of the income (p=0.027) were statistically significantly associated with preventive measures of adverse effects of corticosteroids. The preventive measure for adverse effects of corticosteroid also related to the family income – those who had a higher income (above 30,000 Rs) had taken more preventive methods than the families with low incomes (data not shown).

Parents (p=0.702), age (p=0.192), number of children (p=0.605), ethnicity (p=0.605), education level (p=0.123) and employment(p=0.497) were not statistically significant in association with the preventive measures for the adverse effects of corticosteroids. In this study it was noticed that the majority of parents knew that the child should be kept away from crowded places (70%; n=210) and that the contact with chickenpox virus required an immediate medical advice (67%; n=201).

In the present study, it was revealed that some parents had less awareness about vitamin D supplement that should be given to children in order to prevent fractures (29.3%). These results contrast with a study conducted in England. LeBoff (2022) highlighted that a meta-analysis demonstrated a clinically significant reduction in bone loss at the lumbar spine and forearm with vitamin D and calcium supplementation during corticosteroid treatment. In the UK, a study on oral corticosteroid treatment for osteoporosis prevention found that a large number of individuals taking continuous oral steroids frequently implemented preventive measures for osteoporosis⁽¹⁰⁾.

The findings of the present study highlighted that the percentage of preventive measure knowledge regarding the parental awareness of adverse effects was higher and can be accepted as adequate – they have good preventive awareness. The result regarding the parental preventive awareness were good (65.7%; n=197). These results contrasted with those of another study, performed in Morocco, that was done with long-term glucocorticoids steroid hormone therapy. According to their results, weight gain was reported by 27% of patients, and instances of treatment discontinuation were reported by 18% of patients⁽¹¹⁾. This may be reason for the poor knowledge about preventive measure of adverse effects of steroid therapy in Morocco.

Conclusions

In many neurological conditions, the children require treatment with corticosteroids on a long-term basis. This therapy cannot be replaced by any other. Usually, the benefits of long-term treatment with corticosteroids outweigh the adverse effects, with time. However, the complications of therapy may become a burden for children. In most cases, they are unable to give up on the treatment with long-term corticosteroids and, for that reason, it is not possible to avoid the adverse effects. However, with increasing parental awareness of corticosteroid adverse effects and proper prevention methods, the side effects can be minimized or prevented. According to the findings of this study, conducted in the Neurology unit of the Lady Ridgeway Children’s Hospital, Sri Lanka, the overall parental awareness of adverse effects is poor and the preventive awareness of adverse effects of long-term corticosteroid therapy is good. Therefore, special attention is needed to increase the parental awareness of adverse effects of the long-term corticosteroid therapy.

Limitation of the study

In addition to the limitations encountered during the data collection, there were some limitations identified by the researchers during the study. The findings of this study were limited by the quantitative nature. Apart from that one of the major limitations of this study is that researchers limited their sample to one neurological unit at one children hospital. Although many factors were found to contribute to the parental awareness, the extent to which these factors contribute to parental awareness of side effects and prevention were neither compared nor association between factors were identified due to the descriptive nature of study.

Implication of nursing

This study findings shows that the overall awareness of parents about the adverse effects of long-term corticosteroid therapy is poor, while the awareness regarding the preventive measures is good. This emphasizes the need of proper health education regarding long-term corticosteroid therapy on children with neurological conditions by the nursing officers. Thus, greater attention should be paid on planning health education programs to address the importance of long-term corticosteroid therapy, how to initiate the therapy, what are the adverse effects that children may encounter during therapy, how to monitor the adverse effects, and how to minimize the adverse effects without discontinuing the therapy. This information was disseminated to the parents of children with neurological conditions who have been prescribed corticosteroids for long-term basis through health education sessions at the neurology unit (Ward 25 and neurology clinics) of LRH. Each teaching sessions was conducted for 10 to 15 participants. All participants were given a leaflet during the health education session, so that more information will be delivered to the participants, and they could use the leaflet as a guide especially to identify long-term adverse effects and what to do for preventing or minimizing the long-term corticosteroid adverse effect of their children. Before initiating the education session, the participants were given a pretest paper to evaluate their awareness about long-term corticosteroid therapy, their adverse effects and preventive measures, to assess their level of awareness before the education session, and post-test were given to assess the effectiveness of the education session and assess the participants’ awareness level after the education session. For this purpose, the same pre-test paper was used. Furthermore, it was recommended to expand this study with some improvement regarding data collection method to evaluate parental awareness and the prevention of adverse effects of long-term corticosteroid therapy among children with other conditions, in different study settings related to corticosteroids in pediatrics.

Recommendations

From this study, several recommendations can be highlighted, that would help increase the parental awareness of adverse effects and preventive measures of long-term corticosteroid therapy among pediatric neurology patients. Firstly, awareness of adverse effects of long-term corticosteroid therapy among healthcare professionals should increase by providing guidelines to assess children for adverse effects. These guidelines should be clear, regularly updated, well disseminated, and enforced. The availability of hard copies on the neurology unit and educational sessions is also helpful in increasing awareness among healthcare professionals. This will be helpful in increasing parental awareness during patients’ assessment and education. Secondly, before initiating corticosteroid therapy, parents should be educated about the adverse effects which may encounter during the long-term use and be advised on the preventive measures that may be useful to reduce the risk of adverse effects. Thirdly, provision of educational leaflets and regular education sessions may facilitate the delivery of information to parents to upgrade their knowledge. This may assist in increasing the parental awareness of corticosteroid adverse effects and preventive strategies. Furthermore, it is recommended to expand this study with some improvement regarding data collection method to evaluate the parental awareness and the prevention of side effects of long-term corticosteroid therapy among children with other conditions, in different study settings. This will be beneficial in creating national guidelines and protocols for using corticosteroids in pediatrics.

Autor corespondent: Faiz M.M.T. Marikar E-mail: faiz@kdu.ac.lk

CONFLICT OF INTEREST: none declared.

FINANCIAL SUPPORT: none declared.

This work is permanently accessible online free of charge and published under the CC-BY.