Currently, there is a greater number of children with chronic diseases who sometimes have lifelong disability, are more fragile and are considered medically complex. Many of them require paediatric palliative care (PPC).1 These patients are at risk of malnutrition2 and often experience severe feeding problems, although their prevalence has not been reported. There is widespread consensus that nutritional support via gastrostomy tube (GT) can be an appropriate approach to treat malnutrition in children.3 However, there is little evidence on the performance of GT feeding in PPC.4 The aim of our study was to address this knowledge gap, assess the satisfaction of caregivers and report the complications associated with GT feeding in PPC.

We conducted a cross-sectional study in paediatric patients aged 1 month to 20 years who received PPC and had a GT in place for at least 3 months. The Association for Children with Life Threatening or Terminal Conditions and their Families (ACT) Classification5 was used to categorise the different groups of PPC. To assess the degree of satisfaction of the caregivers of children managed with GT feeding and the wellbeing of patients, we used the standardized questionnaire on the satisfaction with gastrostomy feeding (SAGA-8),6 administered via telephone or email (Table 2). The SAGA-8 is an 8-item self-report instrument, of which 5 questions (Q1–Q5) are rated on a Likert scale (1: minimum satisfaction, 5: maximum satisfaction) and 3 have yes/no dichotomous answers (Q6–Q8). A total score greater than 20 indicates a high level of satisfaction in the respondent. We also added questions regarding prior knowledge of GT feeding and potential complications based on the previous literature on GT feeding in children.7 We summarised the demographic characteristics of the participants with descriptive statistics. Participation in the survey implied informed consent.

Table 1 presents the demographic and clinical characteristics of participants, the prior knowledge about GT and the complications of GT in a sample of 19 children receiving PPC and primarily fed through a GT. The sample amounted to 48.7% of the total patients in PCC. During the follow-up, 1 patient classified as ACT group III died 4 months after placement of the GT. Most caregivers (78.9%) reported an improvement in self-confidence after GT placement. Table 2 summarises the results of the SAGA-8 questionnaire. The mean total SAGA-8 score was 24.9 (standard deviation, 4.9). A high level of satisfaction with GT feeding (SAGA-8 > 20) was reported by 89.5% of caregivers (Table 2). Severe complications (aspiration, fistulisation or haemorrhage) were infrequent, although 10.5% of respondents reported the patient had aspiration pneumonia at least once.

PPC is a dynamic process that involves the management of many symptoms (respiratory failure, malnutrition, pain etc.) in which various techniques (non-invasive ventilation, gastrostomy, etc.) can be used to improve the quality of life of terminally ill patients, even if they have a reduced life expectancy.1 Our study is the first to use the standardized SAGA-8 questionnaire to assess the satisfaction of caregivers of PPC patients. Our results showed a lower level of satisfaction with the support offered by professionals in the centre (Q3), in agreement with studies in children without palliative care needs.2 Our findings suggest that the exchange of information between health care professionals and caregivers needs to be better to improve the care of patients before and after GT placement. This exchange would not only improve the overall acceptance of GT feeding by caregivers, but also the prevention of potential complications of this technique.6

On the other hand, we found a high level of satisfaction (84.2%) when caregivers were asked about the effect of GT on the nutritional status of the child (Q4). This goes against the widespread belief that, given the aggressiveness of the intervention and the limited lifespan of PPC patients, the potential benefits of GT do not compensate its risks. This result suggests that GT can also be contemplated as a means to improve feeding in PPC.6 In our study, the most frequently reported complication associated with GT feeding was hypergranulation tissue, but other studies have reported infection at the GT site.6 Furthermore, our study has identified an important challenge in care quality in the use of GT in PCC patients: adequate communication and support from health care providers. One limitation of the SAGA-8 questionnaire is that it is administered after GT placement and does not reflect the needs or difficulties that caregivers had during this process, for instance during mealtimes. As for our study, one of its limitations was the lack of assessment of anxiety levels. Future studies should include an evaluation of emotional factors before, during, and following any interventions. Also, a larger sample size would be advisable to explain a greater part of the variance in the responses and to document all possible complications in patients accurately. In conclusion, GT placement appeared to improve feeding in PPC and was associated with a high level of satisfaction in caregivers, but the exchange of knowledge between health care professionals and caregivers needs to improve.