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Epidemiology of gastrostomy insertion for children and adolescents with intellectual disability

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Abstract

The largest group of recipients of pediatric gastrostomy have neurological impairment with intellectual disability (ID). This study investigated trends in first gastrostomy insertion according to markers of disadvantage and ID etiology. Linked administrative and health data collected over a 32-year study period (1983–2014) for children with ID born between 1983 and 2009 in Western Australia were examined. The annual incidence rate change over calendar year was calculated for all children and according to socioeconomic status, geographical remoteness, and Aboriginality. The most likely causes of ID were identified using available diagnosis codes in the linked data set. Of 11,729 children with ID, 325 (2.8%) received a first gastrostomy within the study period. The incidence rate was highest in the 0–2 age group and there was an increasing incidence trend with calendar time for each age group under 6 years of age. This rate change was greatest in children from the lowest socioeconomic status quintile, who lived in regional/remote areas or who were Aboriginal. The two largest identified groups of ID were genetically caused syndromes (15.1%) and neonatal encephalopathy (14.8%).

Conclusion: Gastrostomy is increasingly used in multiple neurological conditions associated with ID, with no apparent accessibility barriers in terms of socioeconomic status, remoteness, or Aboriginality.

What is Known:

• The use of gastrostomy insertion in pediatrics is increasing and the most common recipients during childhood have neurological impairment, most of whom also have intellectual disability (ID).

What is New:

• Nearly 3% of children with ID had gastrostomy insertion performed, with the highest incidence in children under 3 years of age.

• Gastrostomy use across different social groups was equitable in the Australian setting.

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Abbreviations

ACHI:

Australian Classification of Health Intervention

APC:

Annual Percentage Change

CI:

Confidence Interval

HMDC:

Hospital Morbidity Data Collection

ICD:

International Classification of Disease

ICPM:

International Classification of Procedures in Medicine

ID:

Intellectual disability

IDEA:

Intellectual Disability Exploring Answers

IRSAD:

Index of Relative Socio-Economic Advantage and Disadvantage

MNS:

Midwives Notification System

PEG:

Percutaneous Endoscopic Gastrostomy

WA:

Western Australia

WARDA:

Western Australian Register for Developmental Anomalies

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Acknowledgements

We gratefully acknowledge staff at the WA Data Linkage Branch, Department of Health, and the data custodians, including the Western Australian Register of Developmental Anomalies, for their assistance in obtaining the linked data used in this project and manuscript review. We acknowledge the Department of Communities (previously the Disability Services Commission), the WA Department of Education, the Catholic Education Office, and the Association of Independent Schools of WA for the assistance with data collection for the IDEA database.

Funding

This project was funded by an Australian National Health and Medical Research Council project grant (APP1103746). HL is supported by an Australian National Health and Medical Research Council Senior Research Fellowship (APP1117105).

Author information

Authors and Affiliations

  1. Telethon Kids Institute, Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, Western Australia, 6872, Australia

    Kingsley Wong, Helen Leonard, Glenn Pearson, Emma J Glasson, Peter Jacoby, Jenny Bourke, Andrew Wilson & Jenny Downs

  2. Medical School, The University of Western Australia, Perth, Australia

    David Forbes

  3. Department of Health, Government of Western Australia, Perth, Australia

    David Forbes

  4. Department of Gastroenterology, Perth Children’s Hospital, Perth, Australia

    Madhur Ravikumara

  5. Department of Developmental Disability Neuropsychiatry, School of Psychiatry, UNSW Sydney, Sydney, Australia

    Preeyaporn Srasuebkul & Julian Trollor

  6. Department of Respiratory Medicine, Perth Children’s Hospital, Perth, Australia

    Andrew Wilson

  7. School of Paediatrics, The University of Western Australia, Perth, Australia

    Andrew Wilson

  8. School of Physiotherapy and Exercise Science, Curtin University, Perth, Australia

    Andrew Wilson & Jenny Downs

  9. Children’s Neuroscience Service, Department of Neurology, Perth Children’s Hospital, Perth, Australia

    Lakshmi Nagarajan

Authors
  1. Kingsley Wong
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  2. Helen Leonard
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  3. Glenn Pearson
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  4. Emma J Glasson
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  8. Jenny Bourke
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  9. Preeyaporn Srasuebkul
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  13. Jenny Downs
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Contributions

Dr. Wong conceptualized and designed the study, was responsible for obtaining funding, performed the linked data analysis, participated in the initial writing of the manuscript, and reviewed and revised the manuscript.

A/Prof. Leonard conceptualized and designed the study, was responsible for obtaining funding, coded the indications for gastrostomy according to hospitalization data, and reviewed and revised the manuscript.

Mr. Pearson provided interpretation for the analysis of Aboriginality data and critically reviewed and revised the manuscript with reference to Aboriginality.

Dr. Glasson drafted the initial manuscript and reviewed and revised the manuscript from conceptualization to completion.

Prof. Forbes conceptualized and designed the study, was responsible for obtaining funding, reviewed and revised the manuscript, and critically reviewed the manuscript for important intellectual content regarding aspects of gastroenterology.

Dr. Ravikumara conceptualized and designed the study, was responsible for obtaining funding, reviewed and revised the manuscript, and critically reviewed the manuscript for important intellectual content regarding aspects of gastroenterology.

A/Prof. Jacoby conceptualized and designed the study, was responsible for obtaining funding, provided specialist statistical support, and reviewed and revised the manuscript.

Ms. Bourke collected data for the study and critically reviewed the manuscript for important intellectual content regarding aspects of intellectual disability.

Dr. Srasuebkul reviewed and critically reviewed the manuscript for important intellectual content regarding aspects of intellectual disability.

Prof. Trollor conceptualized and designed the study, was responsible for obtaining funding, reviewed and revised the manuscript, and critically reviewed the manuscript for important intellectual content regarding aspects of intellectual disability.

Dr. Wilson conceptualized and designed the study, was responsible for obtaining funding, reviewed and revised the manuscript, and critically reviewed the manuscript for important intellectual content regarding aspects of pediatric medicine.

Prof. Nagarajan conceptualized and designed the study, was responsible for obtaining funding, reviewed and revised the manuscript, and critically reviewed the manuscript for important intellectual content regarding aspects of pediatric medicine.

A/Prof. Jenny Downs conceptualized and designed the study, was responsible for obtaining funding coordinated and supervised linked data collection, reviewed and revised the manuscript and was the principal investigator of the research.

All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Corresponding author

Correspondence to Jenny Downs.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Ethical approval was obtained from the Department of Health WA (#2016/32) and the Western Australian Aboriginal Health Ethics Committee (747).

Informed consent

Informed consent was not obtained from individual participants included in the study due to the nature of the anonymized data linkage data.

Additional information

Communicated by Peter de Winter

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Wong, K., Leonard, H., Pearson, G. et al. Epidemiology of gastrostomy insertion for children and adolescents with intellectual disability. Eur J Pediatr 178, 351–361 (2019). https://doi.org/10.1007/s00431-018-3304-x

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  • DOI: https://doi.org/10.1007/s00431-018-3304-x

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