Background <p>Intestinal failure (IF) is a broad term encompassing various conditions that hinder the body’s ability to absorb nutrients for growth and maintenance. These conditions can significantly affect child’s well-being, leading to physical limitations, psychological distress, and social isolation. We aimed to evaluate the available data on health-related quality of life (HRQoL) in pediatric patients with IF and without neurodevelopmental delay.</p> Methods <p>For this systematic review and meta-analysis, we searched CINAHL, EMBASE, PsycINFO, PubMed, and Web of Science. All observational studies of pediatric patients (&lt; 18 years) with IF which measured HRQOL and with evidence of absence of neurodevelopmental delay were included, without language or date restrictions, up to June 2024. We did separate random-effects meta-analyses for overall HRQOL and subgroup domains. Evidence from observational studies was synthesised as differences between standardised mean differences (SMDs) for all subgroup domains. Heterogeneity was assessed using the I² statistic and the Cochran Q test. The quality of the evidence was assessed with the Newcastle-Ottawa scale. This study is registered on PROSPERO, number CRD42024561812.</p> Results <p>Of 491 records identified, 14 were eligible and data were available for 12 studies, all of which had a fair/good quality. The included studies involved a pooled sample of 510 participants (mean age = 7.0 ± 3.6 years). The analysis disclosed that compared to healthy children, pediatric patients with IF had lower overall quality of life in both child- and parent-report (Standardized Mean Difference [SMD]= -0.62; 95% CI [-0.80, -0.43]; <i>p</i> &lt; 0.001, and SMD= -0.70; 95% CI [-1.11, -0.28]; <i>p</i> &lt; 0.001, respectively), except for emotional and social domains (SMD[child] = -0.23; 95% CI [ -0.38, -0.08]; <i>p</i> = 0.001 Vs SMD[parent]= -0.23; 95% CI [ -0.60, 0.14]; <i>p</i> = 0.21, and SMD[child] = -0.40; 95% CI [ -0.70, -0.10]; <i>p</i> = 0.007 Vs SMD[parent]= -0.24; 95% CI [ -0.62, 0.14]; <i>p</i> = 0.21, respectively), where parents overestimate emotional and social HRQOL of their children.</p> Conclusions <p>This study highlights the significant impact of IF on well-being of pediatric patients. Targeted interventions addressing both physical and psychosocial needs are crucial to improve HRQOL in this population.</p>

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Health-related quality of life in pediatric patients with intestinal failure without neurodevelopmental delay: a systematic review and meta-analysis

  • Francesco Milo,
  • Deny Menghini,
  • Teresa Capriati,
  • Lorenzo Norsa,
  • Francesco Proli,
  • Giovanni Boroni,
  • Maria Immacolata Spagnuolo,
  • Giovanna Verlato,
  • Antonella Lezo,
  • Claudio Romano,
  • Stefano Vicari,
  • Antonella Diamanti

摘要

Background

Intestinal failure (IF) is a broad term encompassing various conditions that hinder the body’s ability to absorb nutrients for growth and maintenance. These conditions can significantly affect child’s well-being, leading to physical limitations, psychological distress, and social isolation. We aimed to evaluate the available data on health-related quality of life (HRQoL) in pediatric patients with IF and without neurodevelopmental delay.

Methods

For this systematic review and meta-analysis, we searched CINAHL, EMBASE, PsycINFO, PubMed, and Web of Science. All observational studies of pediatric patients (< 18 years) with IF which measured HRQOL and with evidence of absence of neurodevelopmental delay were included, without language or date restrictions, up to June 2024. We did separate random-effects meta-analyses for overall HRQOL and subgroup domains. Evidence from observational studies was synthesised as differences between standardised mean differences (SMDs) for all subgroup domains. Heterogeneity was assessed using the I² statistic and the Cochran Q test. The quality of the evidence was assessed with the Newcastle-Ottawa scale. This study is registered on PROSPERO, number CRD42024561812.

Results

Of 491 records identified, 14 were eligible and data were available for 12 studies, all of which had a fair/good quality. The included studies involved a pooled sample of 510 participants (mean age = 7.0 ± 3.6 years). The analysis disclosed that compared to healthy children, pediatric patients with IF had lower overall quality of life in both child- and parent-report (Standardized Mean Difference [SMD]= -0.62; 95% CI [-0.80, -0.43]; p < 0.001, and SMD= -0.70; 95% CI [-1.11, -0.28]; p < 0.001, respectively), except for emotional and social domains (SMD[child] = -0.23; 95% CI [ -0.38, -0.08]; p = 0.001 Vs SMD[parent]= -0.23; 95% CI [ -0.60, 0.14]; p = 0.21, and SMD[child] = -0.40; 95% CI [ -0.70, -0.10]; p = 0.007 Vs SMD[parent]= -0.24; 95% CI [ -0.62, 0.14]; p = 0.21, respectively), where parents overestimate emotional and social HRQOL of their children.

Conclusions

This study highlights the significant impact of IF on well-being of pediatric patients. Targeted interventions addressing both physical and psychosocial needs are crucial to improve HRQOL in this population.