Gastrostomy matters—The impact of pediatric surgery on caregiver quality of life

doi:10.1016/j.jpedsurg.2013.02.012

Journal of Pediatric Surgery

Volume 48, Issue 5, May 2013, Pages 963-970

https://doi.org/10.1016/j.jpedsurg.2013.02.012 Get rights and content

Abstract

Introduction

While pediatric surgeons consider gastrostomy to be routine treatment for children with feeding difficulties, the impact on the family is not fully understood. This study focuses on Quality of Life (QoL) of parents of children who require a gastrostomy tube.

Methods

A prospective repeated measures cohort study was conducted between November 2009 and March 2012. Demographic, surgical, and QoL data were collected at Baseline, 2 weeks, 3, 6, 9, and 12 months after surgery. At each time-point parents completed three QoL measures: Short Form 36v2 (SF-36), Caregiver Strain Index (CSI), and Parent Experience of Childhood Illness (PECI).

Results

A total of 31 caregivers were recruited with a mean age of 32.6 years (SD=7.0). Overall, a 38% increased risk of depression was seen in the SF-36 when compared to population norms, and a moderate effect was seen in mental health at 12 months (ES = 0.56). The CSI demonstrated a decrease in caregiver burden (8.72 to 7.05, p = 0.007, 95% CI (0.57–3.18)), while the PECI revealed a decrease in frequency of feelings of guilt, worry, sorrow, anger, and long term uncertainty over 12 months.

Conclusion

Gastrostomy not only improves the child's physical health, but also improves the mental health of the child's caregivers, especially at (or after) one year.

Section snippets

Methods

This study is a prospective, repeated measures cohort study conducted between November 2009 and March 2012, following Research Ethics Board approval (REB 09-260) and in consultation with a clinical epidemiologist (JP) trained in qualitative and quantitative methods. The QoL questionnaires used in this study were the Short Form 36 version 2 (SF-36v2), Caregiver Strain Index (CSI) and the Parent Experience of Childhood Illness (PECI). Demographic, surgical, and QoL data were collected 1 month (± 2

Results

Only results for the primary outcomes of the study are featured in this paper; further results from our analysis of covariance will be reported once complete. In total, 31 caregivers were enrolled in the CARE study, with 21 completing 12 months of follow-up (70%). All patients of participating caregivers underwent gastrostomy, with 1 patient being converted to a gastrojejunostomy tube after enrollment. Demographics of both caregivers and patients are listed in Table 1. The results from each QoL

Discussion

Feeding difficulties requiring a permanent, surgically placed, feeding tube are a common problem in pediatric surgery. The decision to insert a gastrostomy tube is one in which the caregiver is often quite conflicted. This study was designed to facilitate that decision. Quantification of the impact of the procedure on the QoL of caregivers was performed over a one-year follow-up period, wherein data were collected using 3 separate QoL measures.

One of these measures was the Short Form 36v2

Acknowledgments

We would like to acknowledge the many research interns who contributed to the data collection of this study including, Ms. Iris Lui, Ms. Ashley Lamond, Mr. Josh Nederveen, Mr. Michael Gallea, and Ms. Damanjot Otal. We would also like to thank the study participants for their dedication and time spent completing our QoL questionnaires.

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Role of patient and family engagement in quality improvement for pediatric surgery
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In recent decades, the role of quality improvement (QI) in pediatric surgery has grown substantially. Patient and family engagement can help to maximize the impact of QI by enhancing safety and patient outcomes. Yet, broader, systematic efforts to actively involve patients and families in QI initiatives remain a persistent gap in pediatric surgery. To address this gap, we propose an agenda centered on three key goals for future quality improvement efforts: (1) building partnerships with patients and their families; (2) expanding the use of patient-reported outcomes (PROs) and novel, cross-disciplinary research methods; and (3) engaging patients and families consistently across all stages of pediatric surgical care. Fulfilling this agenda will be essential in shifting our mindset to view QI as a collective that involves patients, families, clinicians, and payers in continuous, system-wide opportunities to evaluate and improve care. Actively listening to and collaborating with patients and families may also help renew our focus on narrowing the gap between current practice and the best possible practice for children undergoing surgery.
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Citation Excerpt :
A subsequent study by Franken et al (2020) found that children undergoing gastrostomy tube placement who have other comorbidities have a lower HRQoL following gastrostomy tube placement than children who do not have comorbidities [13]. Additionally, Pemberton et al (2013) studied HRQoL in caregivers of patients requiring gastrostomy tubes and found that gastrostomy tube placement improves caregiver HRQoL and that the most significant improvement was at 12 months post gastrostomy tube placement; however, no control group was used for comparison [14]. Although the above studies have evaluated child HRQoL following pediatric gastrostomy tube placement, few have evaluated changes in caregiver HRQoL, fewer have maintained follow-up for greater than 6 months, and none appear to compare the HRQoL of caregivers of gastrostomy patients to a separate control group.
Children undergoing gastrostomy tube placement often have complex medical conditions that can increase caregiver burden and decrease caregiver health-related quality of life. Our goal was to identify changes in health-related quality of life over a 12-month period in the caregivers of these patients.
We performed a prospective cohort study of pediatric patients undergoing gastrostomy tube placement. Using the PedsQL 2.0 Family Impact Module, we surveyed the caregivers of these patients at baseline (prior to gastrostomy tube placement) and 1 month, 3 months, 6 months, and 12 months following gastrostomy tube placement. We administered the same survey, at baseline only, to a control group composed of caregivers of pediatric patients undergoing elective hernia repair.
We enrolled 130 patients undergoing gastrostomy tube placement and 35 patients undergoing hernia repair. At baseline, these caregivers had significantly lower total health-related quality of life compared to caregivers of children undergoing hernia repair (47.4 ± 16.1 vs 86.0 ± 15.6, P < .001). In the first year after gastrostomy tube placement, caregivers had significant increases in total health-related quality of life (P < .01) and the physical functioning (P < .05), communication (P < .05), worry (P < .05), and daily activities (P < .001) subdomains. A within-subjects analysis comparing scores at baseline and 12 months revealed a significant increase in the total health-related quality of life score over this 1-year period (60.7 ± 18.9 vs 47.4 ± 16.1, P < .01). The total health-related quality of life at 12 months, however, remained significantly lower compared to controls (60.7 ± 18.9 vs 86.0 ± 15.6, P < .001).
Our findings highlight the ongoing caregiver burden associated with children undergoing gastrostomy tube placement and provide evidence of the need for efforts directed at caregiver support post gastrostomy tube placement.
Primary Placement of a Low-Profile Gastrostomy Button Is Safe and Associated With Improved Outcomes in Children
2020, Journal of Surgical Research
This study evaluates tube-specific outcomes after primary placement of low-profile buttons (LPBs) compared with long gastrostomy tubes (LGTs).
All surgically placed gastrostomy tubes from 2015 to 2017 from a single institution were reviewed. Primary outcomes were tube dislodgement and tube-related readmissions within 30 d. Secondary outcomes were resource utilization and minor complications within 6 mo.
53% (n = 253) of patients received an LGT and 47% (n = 228) received an LPB. Groups were similar with regard to operative indication and approach, but LPB patients were slightly older (9 versus 6 mo, P = 0.02). Tube dislodgement occurred overall in 6% of patients, with 23% and 41% experiencing leakage and granulation tissue, respectively. LGT patients experienced higher rates of tube dislodgement (9% versus 3%, P = 0.006), but no difference in tube-related readmissions (P = 0.38). LGT patients were also more likely to visit the ER for a tube-related concern (43.9% versus 31.6%, P = 0.01) and report problems of leakage around the tube (27.7% versus 17.5%, P = 0.01). No difference was found for issues of peristomal granulation tissue or in tube-related readmissions.
Primary placement of low-profile gastrostomy buttons is safe and demonstrated superior tube-related outcomes compared with LGTs.
Schistosoma ova found in gastrostomy site granulation tissue
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Citation Excerpt :
It has several indications involving failure to thrive, swallowing disorders, neurological impairment, severely traumatized children and malnutrition for purpose of long-term enteral feeding. About 11–26% of children with gastrostomy tubes will experience complications during the early course of their care [3–5]. Schistosomaiasis is a common parasitic disease and is also a major public health problem in many parts of the developing world, especially in sub-Saharan Africa, Western Asia, and Southeast Asia.
Severe traumatic brain injury (TBI) occurs rarely in children. Gastrostomy tube placement is a frequently performed procedure in children and has various indications including neurologic impairment. One of the common complications of gastrostomy is granulation tissue formation resulting from chronic irritation.
We present the case of 12-years-old Asian male patient that was referred to our hospital as a victim of road traffic accident (RTA) with polytrauma (severe traumatic brain injury, fracture left tibia & fibula). He underwent laparoscopic gastrostomy for long-term feeding. Post tube placement, granulation tissue formed and persisted in spite of multiple silver nitrate cauterization trials necessitating surgical removal. On histopathologic examination of the excised specimen, it was found to harbour schistosoma ova.
Gastrostomy tube placement is commonly performed in pediatric cases with serious neurologic insult. Many cases of Schistosoma infestation are asymptomatic. Some cases have atypical presentation including histopathologic diagnosis.
Outcomes after laparoscopic gastrostomy suture techniques in children
2018, Journal of Surgical Research
There are various suture techniques used during laparoscopic gastrostomy to secure the stomach to the anterior abdominal wall. However, it remains unclear whether temporary fixation or subcutaneous absorbable sutures predispose pediatric patients to fewer postoperative complications. Our goal was to determine if a particular suture technique resulted in an increased risk for the development of postoperative complications.
A retrospective cohort analysis was performed for patients less than 18 y of age who underwent laparoscopic gastrostomy at a tertiary Children's Hospital between 2012 and 2016. Children were grouped according to suture techniques for laparoscopic gastrostomy placement: temporary sutures or subcutaneous absorbable sutures. Postoperative outcomes at 30 d were defined as major complications (tube dislodgement, unplanned reoperation, readmission) and minor complications (stitch abscess, surgical site infection, emergency department visit). The chi squared test was used to determine if an association existed between the suture techniques and 30 d postoperative complications.
We identified 682 pediatric patients who underwent laparoscopic gastrostomy. There were 301 (44%) patients with subcutaneous sutures placed and 381 (56%) with temporary sutures placed. The overall rate of major and minor complications was 8.3% and 22%, respectively. We observed a significant difference in the occurrence of major postoperative complications between the subcutaneous and temporary suture techniques (11% versus 6.3%, P = 0.029). There was no significant difference in the development of minor complications between subcutaneous and temporary suture techniques.
Children who receive subcutaneous sutures during laparoscopic gastrostomy are at an increased risk for developing a major postoperative complication.

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^☆: There were no issues of conflict of interest during the completion of this project.

^☆☆: This project received funding from the McMaster Surgical Associates.

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Gastrostomy matters—The impact of pediatric surgery on caregiver quality of life☆,☆☆

Abstract

Introduction

Methods

Results

Conclusion

Section snippets

Methods

Results

Discussion

Acknowledgments

J Am Diet Assoc

J Pediatr Nurs

J Pediatr Surg

J Pediatr Surg

J Pediatr

J Pediatr

J Pediatr Surg

J Clin Epidemiol

Osteoarthritis Cartilage

Effects of gastrostomy feeding in children with cerebral palsy: an AACPDM evidence report

Dev Med Child Neurol

Nasogastric or gastrostomy feedings in children with neurologic disabilities

Clin Pediatr

Gastro-oesophageal reflux and feeding problems after gastrostomy in children with severe neurological impairment

Dev Med Child Neurol

Percutaneous endoscopic gastrostomy without an antireflux procedure in neurologically disabled children

Clin Pediatr

Caregivers’ perceptions following gastrostomy in severely disabled children with feeding problems

Dev Med Child Neurol

Long-term gastrostomy in children: caregiver coping

Gastroenterol Nurs

Impact of Gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy

Dev Med Child Neurol

Techniques and complications of percutaneous endoscopic gastrostomy in children

ANZ J Surg

A prospective evaluation of the button gastrostomy in children

Can J Surg