This systematic review assessed the burden of HP on children and their families, examining physical, psychological, and social-financial impacts. Persistent pain, frequent hospitalisations, and long-term complications such as diabetes, significantly reduce health-related quality of life. Psychological distress affects both children and parents, cascading into social and educational challenges. Financial strain further compounds this burden, underscoring the need for targeted healthcare strategies. Previous studies have detailed the physical effects of HP, including inflammation and pancreatic necrosis²⁷. Liu et al²⁸ highlighted rapid progression in children with PRSS1 mutations, with a median transition to CP within 2.25 years, accompanied by persistent pain. This review confirms as pain as a dominant, enduring challenge requiring ongoing medical management^23,25.

The psychological burden of HP, underexplored in prior reviews⁵, includes emotional distress and behavioural challenges related to recurrent pain. The unpredictable nature of pain often contributes to emotional dysregulation and maladaptive coping, such as medications overuse, reflecting patterns seen in other chronic paediatric conditions²⁹. Parental distress is significant, with anxiety often intensified after genetic testing³⁰. Parents, particularly mothers, report guilt and fear over disease transmission and caregiving burdens, which can strain relationships and lead to social isolation³¹. Socially, frequent hospitalisations causes school absences, hampering academic progress and peer relationships³². Children with chronic illnesses are more likely to underperform academically and experience social isolation due to stigma³³ and physical limitations³⁴, contributing to loneliness³⁵ and depression³⁶. Although there are no direct measurements of how education days lost to HP effect subsequent lifetime potential earnings, it can only be deduced that days lost affect both the child in the long run and the family immediately, with an adverse financial consequence. Families face significant direct costs related to hospital visits, diagnostics, enzyme therapy, and surgeries. Shelton et al³⁷ noted 43% of families perceive medical expenses as burdensome, with data supplementing HP-related healthcare costs exceeding $2 billion annually³⁸ in the US alone. Among treatment options, TPIAT has proven effective in improving physical and emotional quality of life in paediatric patients³⁹. However, the procedure’s high upfront costs—including surgery, hospitalisation, and follow-up care— place significant pressure on families and healthcare systems²². Despite the initial expenses, the NHS⁴⁰ suggests that TPIAT may be cost-effective long term, as it reduces reliance on pain management, recurrent hospitalisations, and other medical interventions compared to conservative management.

The quality of the included studies critically influenced the strength and reliability of the conclusions drawn from this systematic review. There were significant methodological concerns, particularly regarding confounding factors and measurement validity. The failure to define, measure, or control for confounders increased the risk of biased associations, complicating the determination of causal relationships between variables. Additionally, the lack of discussion on the validity and reliability of exposure and outcome measures introduced uncertainty regarding the accuracy and consistency of the reported findings. Without robust statistical analyses, the studies lacked the rigour needed to produce precise and generalisable results. Collectively, these limitations reduced the overall confidence in the findings and emphasise the need for larger, more rigorously designed studies in future research.

This review advanced the understanding of how the disease burden of paediatric HP affects children and families by integrating both quantitative healthcare data and qualitative family impact measures, a key gap in prior research. By synthesising these perspectives, it highlighted the broader effects on families, moving beyond individual patient outcomes. Notably, it incorporated children’s own voices, a rarely explored dimension in paediatric pancreatitis research. Furthermore, this review provided a comprehensive estimate of both direct and indirect economic costs associated with the condition. However, several limitations involved the heterogeneity of study designs and outcome measures precluded meta-analysis, necessitating a narrative synthesis. This approach limited the strength of clinical recommendations. Some included studies relied on small, single-centre samples limiting the generalisability of the findings. Furthermore, majority of the included studies focused on tertiary care centres, potentially excluding milder cases and introducing bias in the disease representation.

Although this review primarily focused on the direct impacts of pancreatitis, long-term follow-up data beyond adolescence remains sparse. Future studies should prioritise larger, multi-centre studies to capture a more comprehensive range of long-term psychosocial outcomes for individuals who survive into adulthood, particularly regarding academic achievement, career trajectories, and family life. Economic data in the included studies were primarily derived from developed healthcare systems, limiting the applicability of the findings to low-income or non-western healthcare contexts. Moreover, the exclusion of unpublished studies and non-English articles introduced the possibility of publication bias, which may distort the overall conclusions by under-representing certain findings or perspectives.

The findings from this review emphasise the need for more research on the early identification of HP and the improvement of genetic testing and awareness. Early detection through genetic screening can facilitate better disease management and interventions, potentially reducing the severity of the condition. Raising public and clinical awareness of HP is also essential for timely diagnosis and intervention, minimising the long-term impact on affected children and their families. A multidisciplinary approach to managing paediatric HP is essential, integrating medical, psychological, and social support. Clinicians should prioritise mental health care by incorporating routine screenings for anxiety and depression and fostering peer support networks to enhance the affected children’s overall well-being. Healthcare providers must train medical staff to educate, and support affected families, ensuring they have the necessary skills to deliver comprehensive care. Policy reforms are urgently needed to improve access to care for families affected by HP. In private insurance-based systems, this includes expanding insurance coverage for the long-term treatment of HP. In publicly funded systems, efforts¹⁵ should ensure adequate resources and equitable access. Mental health support must be integrated into care plans to address the psychological burden on patients and families. There is also a need for studies on the effectiveness of interventions aimed at reducing the disease burden, including psychosocial support programmes and educational accommodations for affected children.