Rate of paediatric gastrostomy insertion in England and relationship to epidemiology of cerebral palsy

Abstract

Background and objectives

Gastrostomy tubes are commonly used to provide an alternative route for enteral nutrition. Most of the gastrostomies are inserted in children with cerebral palsy. Previous studies have shown an increase in insertion rate, however, epidemiological studies reveal a stasis in prevalence of cerebral palsy. We aimed to provide an up-to-date rate of gastrostomy insertion in children in England over a 20-year period and systematically review the prevalence of cerebral palsy to ascertain an epidemiological explanation for insertion trends.

Methods

Retrospective search of Hospital Episode Statistic, a database held diagnosis and procedural code from all England National Health Service hospitals from 2000 to 2021 using International Classification of Disease-10 and Office of Population Censuses and Survey’s Classification-4. England Office for National Statistics data were used for population census. MEDLINE and EMBASE were systematically searched for epidemiology of cerebral palsy.

Results

There were 23 079 gastrostomies inserted in children <15 years in England (2000–2021) leading to a frequency of 12.4 insertions per 100 000 children per year and 1383 gastrostomy insertions in 15–18 years age group (6 per 100 000). The overall gastrostomy insertion rate in children <15 years has increased from 3.7 procedures per 100 000 in 2000 to 18.3 per 100 000 in 2017. Prevalence of cerebral palsy remained stable (1.5–3.3 per 1000 birth) since 1985.

Conclusions

There was a significant increase in the rate of gastrostomy insertion in children in England during most of the last 20 years not explained by a stable prevalence of cerebral palsy.

WHAT IS ALREADY KNOWN ON THIS TOPIC.

• Previous reports suggest an increase in gastrostomy insertion in children.

• Majority of gastrostomies are inserted in children with neurological disabilities.

• Previous prevalence of cerebral palsy showed a declining trend.

WHAT THIS STUDY ADDS

• A rapid increase in gastrostomy insertion in England over the last two decades.

• An up-to-date systematic review revealed static prevalence of cerebral palsy.

• Most gastrostomy insertion occurred in children below the age of 4 years.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• Better understanding of the intervention and healthcare expenditure.

• Provide a platform for appropriate recording and updated indication.

Introduction

Gastrostomy tubes are often used in children and adults to provide an alternate route of nutrition in patients with feeding difficulties.¹ Historically, gastrostomies were performed as an open abdomen procedure, but minimally invasive techniques such as the percutaneous endoscopic approach, first described by Gauderer et al ² and the laparoscopic approach, described by Andersson et al,³ are now considered standard practice.⁴

The common indications for gastrostomies in the paediatric population are summarised in the European Society for Paediatric Gastroenterology, Hepatology and Nutrition position paper,⁵ include optimising nutritional and growth, pre-empting undernutrition, supporting an unpalatable diet, decompressing gastric stasis, improving medication adherence, ensuring safe feeding and improving the quality life. Gastrostomies are often sited in children with neurological disorders, congenital malformations and malignancies, but up to 87.4% are inserted in children with neurodisabilities and cerebral palsy (a neurological disorder affecting movement and coordination and caused by non-progressive brain insult).⁶ They can also help mitigate aspiration risk in children with unsafe swallow and minimise trauma from repeated insertion of nasogastric tubes.

Previous studies have shown global rise in the rate of gastrostomy insertion in children,^{6 7} but without clear documentation of insertions in different age groups. On the other hand, the prevalence of cerebral palsy (the group where the bulk of gastrostomy insertion is concentrated) has remained stable or is showing a trend of decline.⁸

The aim of this study was to investigate trends in gastrostomy insertion rates within the paediatric population in England over a 20-year period stratified by age groups as reported by National Health Service (NHS) Digital. We also conducted a systematic review on the epidemiology of cerebral palsy to ascertain whether the trend of gastrostomy insertion can be explained by a change in the epidemiology cerebral palsy.

Methods

Retrospective analysis of hospitals data using the Hospital Episode Statistics (HES), a centrally held database containing details of all admissions to NHS hospitals in England and is maintained by NHS Digital. HES is available for clinical and non-clinical use. Hospital Admitted Patient Care Activity (HAPCA) derived from HES provided data on the diagnosis (based on International Classification of Diseases-10) and procedures (based on Office of Population Censuses and Survey’s Classification-4, OPCS4) performed on admitted patients in England. NHS Digital data were available in the following cohorts: <15 years of age from 2000 to 2021, 15–18 was reported from 2012 and further age groups stratification (< 1, 1–4, 5–9, 10–15 years) became available from 2013.

For this study, HAPCA data from 2000 to 2021 were searched for paediatric data on the following OPCS4 procedures code: G34.1 (artificial opening into stomach, creation of permanent gastrostomy), G34.2 (artificial opening into stomach, creation of temporary gastrostomy), G44.5 (fibreoptic endoscopic percutaneous insertion of gastrostomy (PEG)).

UK Office for National Statistics data were used to obtain age stratified population estimate from the year 2000 onwards, incidence of gastrostomy insertion was calculated by new insertions and midyear population estimate during the specified period.

For the epidemiology of cerebral palsy systematic review, MEDLINE and EMBASE were searched using the following search terms: cerebral palsy; epidemiology; incidence; prevalence using AND/OR combination as appropriate. The search was limited to human studies published in English language literature between 2011 and October 2021. For epidemiological data before 2011, we used the results from a previously published systematic review and meta-analysis by Oskoui et al.⁹ Titles and abstracts were screened for research papers reporting on epidemiology of cerebral palsy (population or cohort based). Full-text articles were obtained for the eligible studies and objectives, methods and results were assessed by the two authors to ensure consistency of reporting. Single institutions cohort were excluded.

Data validation

Clinical data extracted from clinical databases and patient’s records in our institution were compared with coding data reports (submitted to form part of HES) using the above-mentioned codes for 1-year period (2019).

Results

Children below the age of 15 years

There were 23 079 gastrostomies inserted in children <15 years in England between 2000 and 2021 leading to a frequency of 12.4 insertions per 100 000 children per year. The insertion appears to follow a pattern of population growth (figure 1). The overall gastrostomy insertion rate in children <15 years has increased from 3.7 procedures per 100 000 in 2000 to 18.3 per 100 000 in 2017 before steadying at 17.7 in 2018 and 2019, there was a decline to 16.7 in 2020 and a further decline to 13.5 per 100 000 in 2021 (figure 2). From 2014 onwards, the steep increase in gastrostomy insertion rate in this age group appears to have stabilised around 17 procedures per 100 000 children. The mean insertion rate in the first decade of this cohort (2000–2010) was statistically significant to the mean insertion in the second decade (2011–2020) (p<0.0001). The highest gastrostomy insertion rates are present in the 0–4 age group, with rates per 100 000 for each age group alongside population size are summarised in figure 3 and table 1. There was a reduction in gastrostomy insertion in 2021 likely due to the effect of the COVID-19 pandemic.

Figure 1.

Population in England in million and number of gastrostomies (0–14 years).

Figure 2.

Trends of gastrostomy insertion per 100 000 children (0–14 years).

Figure 3.

Mean gastrostomy insertion in different age range.

Table 1.

Rate of gastrostomy insertion per 100 000 children

	< 1 year	1–4 years	5–9 years	10–14 years	15–18 years
2012–2013	68.49	26.70	9.66	7.11	6.21
2013–2014	73.00	29.30	8.30	7.40	7.21
2014–2015	62.18	28.95	9.11	6.49	6.07
2015–2016	60.48	28.47	8.28	6.23	6.23
2016–2017	64.55	31.63	9.39	6.35	6.22
2017–2018	58.46	30.53	10.67	5.91	5.38
2018–2019	57.54	33.93	8.57	6.23	6.59
2019–2020	51.60	25.84	7.30	5.39	5.39
2020–2021	48.30	20.55	5.86	4.05	3.95

Children 15–18 years

There were 1383 gastrostomy insertions in 15–18 years age group in England between 2012 and 2021 leading to an overall frequency of 6 insertions per 100 000 children. Rate of insertion per year is summarised in table 1.

Epidemiology of cerebral palsy

Studies included in the systematic review are summarised in table 2 and the flow chart of the included studies are illustrated in figure 4. Almost all the included studies have reported on the epidemiology of cerebral palsy prior to 2015. Our systematic review showed a stable prevalence of cerebral palsy per live birth from across the globe, however, none of the published studies have reported on the prevalence from the last few years. There were variation in methods, denominators and data sources of different studies which can affect direct pooling of the data, but almost all studies have deemed a prevalence within a narrow range of 1.5–3.3 per 1000 term or near term infants. One study by Chollat et al has reported a prevalence of 33 per 1000 birth but they looked at extreme prematurity <33 weeks gestation survival at 2 years of age. This study used different denominators and inclusion criteria than the rest of the studies. A meta-analysis in 2011 found the worldwide prevalence of cerebral palsy to be 2.11 per 1000 live births.⁹ This prevalence has remained stable over the previous 10 years despite higher survival rates of at-risk preterm infants.⁹ In the UK, the overall rate between 1984 and 1995 was 2.15 per 1000,¹⁰ while a more recent study analysing routinely collected healthcare data within England and Wales between 2004 and 2014 in those under 25 years of age found an estimated prevalence of cerebral palsy ranging from 2.4 to 3.4 cases per 1000 children.¹¹ The authors note the higher estimate can be attributed to wider inclusion of conditions coded as ‘other paralytic syndromes’, rather than explicitly recorded as cerebral palsy. The lower estimate, while higher than worldwide data is similar to the 2.45 per 1000 reported in a study in north-east England.¹²

Table 2.

Summary findings of studies included in the systematic review

Reference/year of publication	Data location	Data source	Prevalence per 1000/years covered	Denominator
McGuire et al 31 2019	USA	National Health Interview Survey	3.20 2009–2016	3–17 years children
Pulgar et al 32 2019	USA	Medicaid data base	1.78 2013–2015	2–20 years children
Li et al 33 2019	USA	Medicaid data base	2.8 1996–2009	Live births
Khandaker et al 34 2019	Bangladesh	Clinical database	3.4 2015–2016	Live births
Hoei-Hansen et al 35 2019	Denmark	Clinical database	1.99 1999–2007	Live births
Gincota Bufteac et al 36 2018	Moldova	Clinical database (single hospital that covers 75% of population)	3.4 2009–2010	Live births
Hollung et al 37 2018	Norway	Medical Birth Registry of Norway	2.35 1999–2010	Live births
Himmelmann and Uvebrant38 2017	Sweden	Clinical database	1.96 2007–2010	Live births
Kakooza-Mwesige et al 39 2017	Uganda	Population screening	2.7 2015	2–17 years children
Robertson et al 40 2017	Canada	Clinical database	2.22 2008–2010	5-year-old children
Touyama et al 41 2016	Japan	Clinical database	1.88 1988–2007	Live births
Maenner et al 42 2016	USA	Clinical database	2.6 2011–2013	2–17 years
Smithers-Sheedy et al 43 2016	Australia	Clinical database	2 1993–2006	Live births
Frøslev-Friis et al 44 2015	Denmark	Clinical database	2.4 2003–2008	Live births
Himmelmann and Uvebrant45 2014	Sweden	Clinical database	2.18 2003–2006	Live births
Raina et al 46 2010	India	Population survey	2.77 1999–2009	Children under the age of 10
Chollat et al 47 2021	France	Clinical database	33.93 2007–2015	Preterm infrants born <33 weeks to survivors at 2 years
Jensen et al 48 2022	Denmark	Danish Cerebral Palsy Register	1.95 1997–2013	Babies born >21 weeks to term and alive after their first birthday
Prasad and Corbett49 2019	Canada	Clinical database	2.81 1994–1999	Children aged 0–15 years
Sellier et al 50 2021	Australia and Europe	Administrative database and other sources	6.87 1992–2009	Infants born from multiple births surviving by 4 years
Perra et al 51 2021	Europe	Population-based registers	Singletons: 1.64. Multiple birth: 7.02 among multiples 1990–2008	Singleton and multiple births surviving by age of 4 years

Figure 4.

Flow chart for the systematic review.

Discussion

The data showed an increase in gastrostomy insertion rate in children over the last two decades in England. A similar trend was described previously, Fox et al reported an increase from 16.6 procedures in 1997 to 18.5 in 2009 per 100 000 children in the USA.¹³ Although most gastrostomy tubes are inserted in children with cerebral palsy, there was no epidemiological evidence of increased prevalence of cerebral palsy.

We believe there are many factors to explain this increase: the shift towards minimally invasive procedures has led to reduction in operative morbidity and increased safety. A randomised controlled trial comparing PEG to the open surgical insertion in adults found fewer complications in the PEG group (37%) compared with the surgical group (71%). Major complications were also fewer in the PEG group (2.9% vs 5.7%).¹⁴ A meta-analysis in paediatric gastrostomy noted that, despite variable reporting between the studies, PEG appeared to result in shorter procedure times and lower direct costs.¹⁵ This, coupled with reduction in postoperative hospital admission can lead to a decrease in the threshold for gastrostomy insertion.

Another factor to consider is the increasing survival rate of children with extreme neurodisabilities, in the UK, a child with severe CP has about a 40% chance of living to age 20 and the percentage of survival rapidly increase with reduction in the level of neurodisability¹⁶ and changing population outlook towards disabilities can lead to increase in uptake of procedures to support longer living. Gastrostomies can be essential for supporting nutrition and can result in improved quality of life post insertion for both children and their families.¹⁷ In one study, the median age of death in children with more severe forms of cerebral palsy in California was 10.9 years in 1983. By 2010, this had increased to 17.1 years suggesting improvements in care for those with severe neurological impairment.¹⁸

Gastrostomies are also performed in children with milder disabilities¹⁸ and a recent evidence on the utility of early gastrostomy placement¹⁹ might have caused a shift in the general perception of acceptable interventions for children affected by neurodisabilities with many invasive procedures now considered routine clinical care.

The data have also shown that in recent years, the incidence of gastrostomy insertion appears to have stabilised. The initial increase in rates, particularly after 2007 is not clearly explained by the available data and will require further exploratory studies. From 2013, a saturation point appears to have been reached where in the absence of guideline changes or increases in disease prevalence, the rate of gastrostomy insertion remains stable. The plateau could mean that similar rates are to be expected in the future, until further advancements in medicine. Such information regarding trends is essential in ensuring the healthcare service is prepared to allocate resources accordingly. In 2020–2021, healthcare systems across the globe were impacted by COVID-19 pandemic leading to severe restrictions on elective procedures. Gastrostomy insertions are seldomly urgent procedures and procedural rates were lower in both years in England. The number of gastrostomies inserted in 2020 was similar to 2014 figure and just over the number inserted in 2012 (figure 1). We expect this will revere the saturation trend seen in previous years as more procedures are performed in the coming years.

The majority of gastrostomies were inserted in the 0–4 age group, likely due to neurological disorders accounting for most of the procedures.⁶ Most neurodisabilities are commonly diagnosed in early childhood and most children receive nutritional support early on.^{20 21}

As many children with severe neurodisabilities are non-verbal, many studies have focused on quality of life reports from cares/parents as a surrogate marker, the positive impact of gastrostomies was well documented, carers often found the feeding process easier and there were positive effects on the overall caregiver satisfaction post procedure.²² There was also a decrease in parental concerns related to nutritional status postgastrostomy insertion.²³

Although there are positive reports on the carer experience, a systematic review has found it unclear whether gastrostomies in children with cerebral palsy are overall beneficial or harmful.²⁴ Others have reported negative outcomes as tube feeding can negatively impact families, adding further pressures on the carers and increasing family stress. Carers have less time for rest, some having difficulty accommodating the feed timings, restricted ability to go out and encountering stigmatising attitudes of others.^{22 25 26} The quality of life of patients is not always correlated with improved nutritional status.²⁷

Also minimally invasive gastrostomy insertion is not without risks. A meta-analysis looking at complication rates using PEG and laparoscopic-assisted gastrostomy (LAG) methods found major complications in 5.4% of PEG and 1% using LAG.²⁸ Minor complications include granulation tissue formation, local infection and external leakage, while most serious complications related to systemic infection²⁹ were also common following PEG insertion. Many patients also have other comorbidities which can lengthen hospitalisation, require complex treatment and increase the burden on the healthcare system.

Economically, considering the costs to health services, social services and families, a small study has shown the average difference between the cost pregastrostomy and postgastrostomy in children with neurodisabilities to be neutral.³⁰ Since then, there has been a change in clinical practice in regard to consumable, formulae and healthcare support for children with tube feeding. This can potentially lead to increase in healthcare expenditure and economic burden for children with gastrostomy tubes.

This study is limited by the retrospective design, pooled coding data from central source can be prone to error but we think this will be minimum as coding data are used to obtain hospital payment and our institution validation data did not identify discrepancy.

Conclusion

Gastrostomy insertion rates have been increasing in England over the past 19 years from 3.7 to 18.3 procedures per 100 000 children below the age of 15 years with no parallel increase in cerebral palsy prevalence. Over recent years, the rate appears to have stabilised at approximately 17 gastrostomies per 100 000 children suggesting a saturation point has been reached. The highest rates of gastrostomy insertion are in the 0–4 age group which can be explained by neurodisabilities accounting for the majority of the indications. There is an acute need for financial and cost analysis of the gastrostomy tube insertions and their impact on healthcare systems. Future studies to look at patients’ level data will enable an accurate assessment of the indications of gastrostomy tube insertion in children and the complex morbidities associated with children requiring gastrostomy insertion.

Data availability statement

Data are available on reasonable request. Data are available on reasonable request from the corresponding author.

Ethics statements

Patient consent for publication

Not applicable.

Ethics approval

The project was registered in our institution clinical governance database and a full ethical review was not deemed to be necessary.