Integrated Multimodal Approaches in Pediatric Palliative Oncology: A Systematic Review Focused on Infants and Toddlers

Abstract

Background/Aim

Pediatric palliative care, particularly in oncology, is aimed at improving the quality of life for children with cancer and other life-limiting conditions. With an increase in the pediatric population eligible for such care, the need for multidisciplinary approaches and the integration of personalized care strategies emerges.

Materials and Methods

We conducted a systematic review to analyze the available evidence regarding the most effective interventions, with particular attention to pharmacological assistance, home management, and the central role of the nurse in childcare. The literature search was conducted through the databases PubMed, CINAHL, Google Scholar, and Scopus, encompassing studies published between 2000 and 2024, with a focus on children aged 0 to 2 years.

Results

Ten key studies were identified that highlighted the importance of the multimodal approach in pediatric palliative care. The main interventions include the use of sedative drugs for symptom management, electronic symptom monitoring to improve family involvement, the importance of pain therapy, and the effectiveness of home care, as preferred by most families.

Conclusion

A care model that integrates multiple strategies, supported by a multidisciplinary team, is essential to ensure the optimal well-being of children in critical conditions. However, the paucity of specific studies on the 0-2 age group and the lack of standardized protocols represent significant limitations in clinical practice.

Introduction

Given the increase in the population of children with chronic and incurable diseases and the need for an approach that goes beyond the simple control of symptoms, pediatric palliative care is a field of medicine that has received increasing attention in recent decades. According to the World Health Organization (WHO), this care pathway is configured as an active and global care model. Notably, it takes charge not only of the patient but also of his family, offering support that begins with the diagnosis and continues throughout the disease, regardless of its clinical evolution (1).

The need for pediatric palliative care is growing, with a significant increase in the number of children affected by life-limiting diseases. According to the most recent epidemiological estimates, the number of minors requiring palliative care increased from 32 to 66 cases per 10,000 between 2009 and 2018, with a forecast increase to 84 cases per 10,000 by 2030 (2). This increase is due in part to medical advances, which allow the long-term survival of children with previously lethal conditions, but who require complex and continuous care.

Pediatric oncology represents one of the most frequent contexts in which palliative care is required, due to the high symptom burden, emotional distress, and need for long-term multidisciplinary support. Many of the approaches discussed in this review have been tested or are particularly relevant for oncological settings, especially during advanced disease stages or end-of-life care.

Unlike adult palliative care, the pediatric context presents numerous challenges, related to the diversity of the pathologies involved, the difficulty in recognizing and managing pain in newborns and infants, and the need for active involvement of the family in the care pathway. Furthermore, psychological support and communication with parents play a central role, since managing expectations and planning future care are critical aspects in improving the child's quality of life and reducing the emotional and psychological burden on the family.

This review aims to identify and analyze the most effective care strategies in pediatric palliative care, with particular attention to interventions applicable to pediatric oncology and designed to optimize family support and symptom management in infants and toddlers.

Materials and Methods

This review was conducted through a critical analysis of the existing literature. The search strategy was based on the systematic investigation of four major biomedical databases: PubMed, CINAHL, Google Scholar, and Scopus, using specific keywords related to pediatric palliative care, such as pediatric palliative care, pain management in neonates, end-of-life care in infants, and home-based palliative care for children.

Inclusion and exclusion criteria. Studies published between 2000 and 2024 were included in the review, with a specific focus on children aged 0 to 2 years with life-limiting or life-threatening diseases. Only peer-reviewed studies in English were selected, describing clinical and care interventions aimed at improving the quality of life of this pediatric population. We excluded studies focused on children older than 2 years or on adult populations, studies that exclusively dealt with experimental treatments not applicable to current clinical practice, and editorials, letters to the editor, and articles without original data.

Selection procedure and analysis. After the initial search, the titles and abstracts of the identified articles were subjected to an independent screening process by two researchers to ensure relevance to the study topic. The articles deemed eligible were then analyzed in full text to assess the methodological quality and the adequacy of the reported results. The selection process was conducted according to the PRISMA guidelines for systematic literature review (3) (Figure 1), and each article was assessed in terms of study design, sample size, outcome measures, and clinical relevance. Additionally, we performed a narrative synthesis, focusing on the qualitative analysis of the included studies rather than a systematic meta-analysis. Finally, the data extracted from the selected studies were summarized and categorized into five main thematic areas, including pharmacological management, electronic symptom monitoring, home care, psychological support to the family, and role of the nurse. The narrative synthesis of the results allowed us to identify the most effective care strategies and the critical issues still unresolved in the field of pediatric palliative care.

Figure 1.

PRISMA Flow Diagram illustrating the study selection process. A total of 3,554 records were identified through database searches. After duplicate removal, 124 articles remained for screening. Following full-text assessment, 113 articles were evaluated for eligibility, and finally, 10 studies were included in the review.

Results

A total of ten studies were included, encompassing a diverse pediatric population ranging from neonates to adolescents, all receiving palliative or supportive care interventions. Across the studies, both pharmacological and non-pharmacological strategies were evaluated for their impact on symptom management, quality of life, and psychosocial outcomes (Table I). Table II summarizes the main findings of this review, categorizing the most effective pediatric palliative care interventions, their reported benefits, and associated limitations. Pharmacological management of pain and symptoms is one of the fundamental components of pediatric palliative care. The use of sedatives and off-label drugs has been shown to significantly reduce suffering and improve the child's well-being (4,5). However, the variability of individual responses and the lack of standardized protocols require careful customization of therapy.

Table I. Populations, interventions, and main findings of the included studies (n=10).

Table II. Summary of the main findings of this review, categorizing the most effective pediatric palliative care interventions, their reported benefits, and associated limitations.

Electronic symptom monitoring and active family involvement have proven to be essential elements to ensure more effective care. The use of digital devices for home monitoring has favored more timely management of the disease, allowing parents to recognize and intervene quickly in case of clinical worsening (6). Such systems have also improved communication between caregivers and the healthcare team, increasing the perception of safety and control by families.

Non-pharmacological interventions can complement pharmacological management, especially in pediatric oncology, reducing the perception of pain and improving emotional well-being (7). At the same time, ensuring a “child-centered” environment, which includes moments of play, privacy, and routine, promotes a more positive therapeutic relationship and reduces distress in the child (8).

Home care has been identified as the preferred modality by most families, as it reduces the discomfort associated with prolonged hospitalizations and allows the child to live in a familiar environment, promoting greater emotional and social stability (9). To ensure adequate home care, it is necessary to prepare a structured support plan, which includes the regular presence of specialized personnel and access to technological resources for continuous monitoring.

The role of the nurse has been highlighted as crucial in pediatric palliative care. In addition to clinical management, the nurse plays an important role in emotional and psychological support for the family. Her ability to anticipate the child's needs and to act proactively in symptom management contributes to improving the patient's overall well-being and reducing the emotional burden on parents (10).

In addition, advance care planning ensures that treatment choices are aligned with the best interests of the child, helping parents to manage complex decisions and potentially improving overall satisfaction with care (11). Finally, in situations of end-of-life care in newborns, the adoption of measures primarily oriented towards comfort becomes essential when the burden of treatment exceeds the potential benefits, highlighting the need for empathic support of the family (12).

Discussion

This systematic review highlights the critical importance of adopting a multimodal, family-centered, and interdisciplinary approach to pediatric palliative care, particularly in infants and toddlers with oncological conditions. The evidence demonstrates that combining pharmacological and non-pharmacological interventions improves symptom control, emotional well-being, and overall quality of life for both children and their families.

Pharmacological management, including sedatives and off-label therapies, plays a central role in alleviating physical symptoms, particularly pain and cardiopulmonary distress. However, the lack of standardized protocols and the variability in drug response among infants underscore the need for tailored interventions and further clinical research (4,5).

Technological tools, such as electronic symptom monitoring, have proven beneficial in engaging parents, facilitating early detection of clinical deterioration, and enhancing communication between families and healthcare providers (6). This reflects a growing trend toward involving caregivers as active participants in care delivery.

Non-pharmacological strategies -including therapeutic play, structured routines, and emotional support- have shown significant psychological benefits, especially in oncology contexts, by reducing anxiety, maintaining a sense of normalcy, and fostering resilience (7,8). These findings support a shift toward a more holistic and child-centered care model.

Home-based palliative care, strongly preferred by many families, has been associated with improved emotional stability, reduced social isolation, and fewer hospitalizations. However, its successful implementation depends on robust healthcare support structures and access to skilled personnel (9). These insights emphasize the need to develop and expand sustainable models for home care.

Importantly, several studies underscore the indispensable role of nursing professionals, who not only manage physical symptoms but also address the emotional and psychological needs of both patients and families (10). The anticipatory and relational competencies of nurses make them central figures in pediatric palliative teams.

Advance care planning was shown to facilitate more aligned and ethically sensitive decision-making processes. It supports families in clarifying goals of care, particularly when curative options are no longer viable, ensuring that the child's best interests remain at the forefront (11).

Finally, in end-of-life scenarios, a focus on comfort and compassionate guidance helps parents navigate one of the most challenging aspects of care, enabling them to make informed decisions grounded in empathy and support (12-14).

Overall, this review consolidates existing evidence supporting an integrated, developmentally appropriate, and family-oriented approach to pediatric palliative care. While many interventions show promise, their direct applicability to infants and toddlers remains underexplored. Further age-specific research and the development of unified clinical guidelines are urgently needed. Additionally other care pathways should be investigated. In recent years, for example, artificial intelligence (AI) has increasingly been considered as a supportive tool in clinical care (15). These strategies can offer applications that range from automated consultation summaries and intelligent data management to patient triage and referral pathways, thereby promising to enhance efficiency and personalization of care. Moreover, comprehensive analyses of global trends highlight how AI can substantially improve diagnostic accuracy, provide tailored therapeutic strategies, and optimize healthcare resource allocation. Nevertheless, key issues regard workforce displacement, over-reliance on technology, legal liability, and data privacy issues (16,17). Algorithmic bias, lack of transparency, and the ethical implications of patient data handling are other pivotal concerns (18). Interestingly, a growing body of literature has focused on patient perspectives, underlining expectations that AI might reduce costs, improve accessibility, and reshape the physician-patient relationship (19). Probably, although this innovative technology can accelerate clinical training (20), synthesize evidence in real time, and foster feedback-driven learning for both students and healthcare professionals, the challenge is to develop “clinical innovators” capable of bridging technology with compassionate, high-quality, and equitable care (21,22).

Study limitations. The studies included were limited to those available in English, potentially excluding relevant findings from other languages. Additionally, the reliance on peer-reviewed literature may have omitted valuable data from grey literature, policy reports, or case studies. In addition, the limited number of randomized controlled trials specific to this age group restricts the generalizability of findings. Many interventions are extrapolated from studies on older children, raising concerns about their direct applicability to neonates and infants.

Furthermore, the heterogeneity in methodologies, sample sizes, and outcome measures among the reviewed studies poses challenges in drawing definitive conclusions. Standardized protocols for evaluating palliative care interventions in pediatric populations are urgently needed.

Conducting rigorous clinical trials in pediatric palliative care presents ethical dilemmas, particularly concerning placebo-controlled studies or experimental interventions. Future research should explore alternative methodologies, such as observational cohort studies or real-world evidence approaches, to strengthen the evidence base.

Clinical implications and future research directions. The findings of this review have several implications for clinical practice: i) Enhanced home-based palliative care: Given the preference for home care among families, healthcare systems should prioritize the development of structured home-based programs. These should include access to specialized nursing care, telemedicine support, and clear guidelines for symptom management (23). ii) Personalized care plans: Multidisciplinary teams must work closely with families to tailor interventions that address both medical and psychosocial needs, recognizing that each child's experience with a life-limiting condition is unique (24). iii) Training and education for healthcare providers: There is a need for comprehensive training programs focusing on pediatric palliative care, equipping healthcare professionals with the skills necessary to provide compassionate, evidence-based care (25). iv) Expansion of research efforts: Future studies should aim to conduct age-specific clinical trials, particularly in neonates and infants, to establish robust, evidence-based guidelines for this vulnerable population. Research should also explore culturally sensitive approaches to pediatric palliative care, ensuring equitable access to high-quality services across diverse populations (26).

Although this review includes studies involving diverse life-limiting pediatric conditions, the interventions discussed -such as symptom management, home-based care, and psychological support- are highly relevant to pediatric oncology. Many patients with cancer experience severe symptom burdens and psychosocial stress, particularly in advanced stages, and the strategies highlighted here can be effectively translated into oncology care models. Future studies should further explore the specific adaptations needed for these approaches in the oncologic context.

Conclusion

Pediatric palliative care is a complex and evolving field, characterized by the need for an integrated and multidisciplinary approach. The results of this review suggest that pharmacological management, electronic symptom monitoring, home care, and psychological support to the family are essential elements to ensure a better quality of life for children with life-limiting diseases.

However, the scarcity of specific studies on the age group 0-2 years and the lack of standardized protocols represent challenges that need to be addressed through further research. These findings, although not limited to oncology, provide valuable insights for improving palliative care delivery in pediatric patients with cancer, especially in the critical 0-2 years age group, where clinical guidelines are still lacking.

Conflicts of Interest

The Authors have no conflicts of interest to disclose in relation to this study.

Authors’ Contributions

AP: Conceptualization, Data curation. SB: Funding acquisition. AP, MC, Methodology, Project administration, Supervision, Validation, Writing - original draft, Writing - review & editing. VA, GAB; SB, FS, MC, MRM, VC: Data curation, Formal analysis, Investigation, Validation, Visualization, Writing - review & editing. All Authors: Writing, review & editing the final draft.

Acknowledgements

The Authors thank all study participants for their involvement in the study. The Authors also thank Maria Cristina Romano for data curation.

Funding

This work was (partially) supported by the Italian Ministry of Health 5X Mille funds, YEAR 2022.

Artificial Intelligence (AI) Disclosure

No artificial intelligence (AI) tools, including large language models or machine learning software, were used in the preparation, analysis, or presentation of this manuscript.