Gastrostomy Tube Feeding Research Articles

17 Caregiver experiences with enteral feeding transitions

Abstract Background Children with medical complexity (CMC) are an expanding group within paediatrics due to advances in medical care, often including a dependence on medical technology. Issues such as oromotor swallowing dysfunction and feeding difficulties are common in this population. As a result, many CMC require the use of enteral tubes for feeding. While evidence does support improved nutritional status with the use of enteral feeding tubes, there is limited literature discussing how these interventions impact other patient centered outcomes, such as quality of life for the child, changes in parental caregiving, and logistical implications for the family. A comprehensive understanding of the positive and negative outcomes associated with selection and transition between different feeding tube options is needed. Objectives To describe and explore the caregiver and patient experience with different feeding tubes, with a focus on the experience of transitioning between different enteral feeding modalities. Design/Methods We conducted semi-structured interviews with 16 participants, including both caregivers and two patients. Reflexive thematic analysis was utilized to identify preliminary themes from interviews. Themes were further refined by the study team. Results The themes identified through interviews included: A) the pros and cons with each type of enteral feeding modality, B) the emotional impacts on patients and caregivers, C) logistical impacts on day-to-day life for families, and D) the experience of transitioning between feeding tubes. Globally, participants spoke positively about their transition from nasogastric feeding to either gastrostomy or gastrojejunal feeding tubes. Caregivers also felt that they were integral to the decision-making process, though some felt in hindsight the transition process was too slow. Conclusion This study highlights both the complexity and heterogeneity of the caregiver experience with different feeding tubes. It found that most families consistently viewed their transitions with enteral feeding tubes positively, as this was seen as a significant milestone in helping their child both nutritionally and with their quality of life. Finally, further research could be done to explore experiences with gastrojejunal and jejunal feeding, as this patient population is not well elucidated within the literature.

The impact of an enteral formula with food-derived ingredients on dietetic practice at a specialist children's hospital in the UK: Retrospective study.

Blended tube feeds are reported to be better tolerated in some children compared to standard commercial enteral formulas, allowing children to normalise feeding by having similar foods as the rest of the family. However, a blended tube feed is contraindicated in patients who are immunocompromised or require post-pyloric feeding as a result of a food safety risk. Other contraindications for blended diet include children who require continuous pump feeding via gastrostomy or nasogastric feeding tube (< 12 Fr) and fluid restrictions. To meet the demands of consumers, manufacturers have developed enteral formulas with food-derived ingredients (EFI). Commercially available EFIs are relatively novel in the UK. The present study aimed to monitor the implementation of an EFI by dietitians in a specialist children's hospital. A single-centre retrospective study was conducted to monitor the dietetic practice of commencing a commercially available EFI (Compleat® paediatric; Nestlé Health Science; 1.2 kcal/ml with 14% food-derived ingredients). Using electronic medical notes, data were collected on all children who commenced an EFI via an enteral feeding tube in a specialist paediatric hospital between August 2022 and December 2023. Data were gathered on demographics (age, sex and primary diagnosis), anthropometric measurements (weight-for-age Z-score and height-for-age Z-score), feed regimens (feed volume, feeding route, mode of feeding [continuous, bolus]), gastrointestinal symptoms (gastro-oesophageal reflux, vomiting, abdominal discomfort, constipation and loose stools) and geographical discharge area for children on home enteral nutrition. Seventy children were included in the analysis. The mean ± SD age was 4.7 ± 6 years. The median admission weight-for-age Z-score was -1.50. The most common primary diagnosis was a neurological impairment in 37/70 (47%) children. Most children were fed via a percutaneous endoscopic gastrostomy 31/70 (44%) and 8/70 (11%) of the children fed directly into the jejunum. The most common reason being gastrointestinal symptoms, 58/70 (83%). The most common gastrointestinal symptom reported before commencing an EFI was loose stools in 22/58 (38%) children. Within 7 days of commencing an EFI, there was reported improvement in gastrointestinal symptoms in all categories. In total, 42/70 children were discharged on an EFI. In our specialist children's hospital, EFI is primarily implemented by dietitians in children who are already established on an enteral formula displaying gastrointestinal symptoms. However, dietitians are increasingly implementing an EFI as their first-line whole protein enteral formula. Furthermore, an EFI was also implemented as a compromise to a blended diet.

Efficacy of enteral feeding by gastrostomy tube placement in patients with Lennox-Gastaut syndrome on body weight and days of hospitalization: A retrospective case series.

Lennox-Gastaut syndrome (LGS) is a severe form of drug-resistant epilepsy that begins during childhood and frequently leads to significant neurological impairments. Patients with LGS are likely to receive improper oral nutrition because of issues such as dysphagia and aspiration risk, potentially resulting in long-term tube feeding and eventual gastrostomy tube placement. Therefore, we investigated the effects of gastrostomy tube placement on nutrition outcomes and frequency of hospitalization in LGS. We retrospectively examined 67 patients diagnosed with LGS who had undergone gastrostomy tube placement between January 2005 and August 2022. Comprehensive clinical data and complications arising from the procedure were collected. Patients' nutrition condition and frequency of hospitalizations were analyzed before and after gastrostomy tube placement. Gastrostomy tube placement was performed for the following reasons: high risk of aspiration (50 out of 67, 74.6%), dysphagia (13 out of 67, 25.4%), persistent nasogastric tube feeding (2 out of 67, 3.0%), and severe malnutrition (2 out of 67, 3.0%). After the procedure, z scores for weight-for-age improved significantly, shifting from -3.35 ± 3.57 to -2.54 ± 2.70 over a 2-year interval (P < 0.001). Additionally, the total days of hospitalization and days of hospitalization due to respiratory symptoms reduced significantly from 41.94 ± 51.76 to 15.27 ± 26.68 (P < 0.001) and from 23.75 ± 36.92 to 10.52 ± 22.98 (P = 0.009), respectively. Among the patients, 50 (74.6%) experienced complications resulting from gastrostomy, with a relatively small proportion of major complications (11 out of 67, 16.4%) and no mortality. Gastrostomy tube placement is a relatively safe procedure with favorable effects on nutrition status and hospitalization rates in patients with LGS.

YouTube as a possible learning platform for patients and their family caregivers for gastrostomy tube feeding: A cross-sectional study.

Many patients and family caregivers have informational needs, especially regarding gastrostomy care and home gastrostomy tube feeding. YouTube is a potential accessible option for educational resources concerning these topics. This study aimed to explore the educational quality and content of informational YouTube videos. We used "gastrostomy," "G-tube," "enteral feeding," and "enteral nutrition," as search keywords on YouTube on October 3, 2021. A total of 229 videos were evaluated using the global quality scale (GQS) and modified DISCERN scoring system. Variables extracted from the videos included general features, video parameters, and content themes. The GQS and modified DISCERN scores were 3.31 ± 0.90 and 2.63 ± 1.23, respectively. There were educational quality and differences among videos uploaded by various agencies. Frequent video content themes included "cleaning and dressing a gastrostomy tube," "bolus method," and "replacing a balloon-type of gastrostomy tube." Results showed that YouTube can be a supplemental educational resource for people requiring gastrostomy care and for their caregivers. However, given the open-access nature of YouTube, healthcare professionals' guidance is needed for video selection. Healthcare professionals should know and use specific, reliable resources to effectively guide and educate patients with gastrostomy and their caregivers, enhancing their self-management skills and knowledge.

Factors influencing gastrostomy tube feeding duration and nutrition outcomes in pediatric patients with Down syndrome: A descriptive cohort study.

Feeding difficulty is widely recognized in patients with Down syndrome, and many patients require gastrostomy tube (G-tube) placement for nutrition. No reliable factors have been identified to predict the expected duration of G-tube feeds in patients with Down syndrome. This descriptive cohort study aimed to determine the factors affecting the duration of G-tube feeds. We also investigated change in body mass index (BMI) from G-tube placement to discontinuation. Medical records of patients with Down syndrome seen by a pediatric gastroenterologist at a tertiary care center between September 1986 and December 2021 were reviewed. Data collection included demographics, anthropometrics, comorbidities, and feeding route. Comparison was performed between patients who discontinued G-tube feeds and those who did not. Two hundred twenty patients (45% female) were included. The median age at G-tube placement was 5 months (interquartile range [IQR]: 0.2-1.3 years). There were 113 (51%) patients who discontinued G-tube feeds, after a median duration of 31.6 months (IQR: 15.6-55.7 months). Tracheostomy was the only covariant associated with a longer duration of G-tube feeds (158 months vs 53 months; P = 0.002). Neither age at G-tube placement nor any comorbidities were associated with BMI status at discontinuation of G-tube. In our cohort of patients with Down syndrome, age at placement of G-tube did not impact the duration of G-tube feeds. Most patients who had a G-tube placed were likely to require enteral feeds for at least 1 year. Those who had a tracheostomy needed their G-tube for a longer time.

Surgical management of large lower cranial nerves schwannomas: long term results of a less aggressive resection strategy.

In an effort to reduce the high morbidity and life-threatening complications after radical resection in large schwannoma surgery, alternative strategies of nontotal resections have emerged. To evaluate the long term clinical and oncological outcome after lower cranial nerves (LCN) schwannoma surgery operated on with a cranial nerve-sparing technique. Single center retrospective cohort study of 8 consecutive patients harboring LCN schwannomas operated on between March 2005 and October 2021. The mean LCN schwannoma diameter was 33mm (range 26-51). Seven patients (87,5%) underwent a modified retrosigmoid approach. Three patients underwent gross total resection (37,5%), 3 had received neartotal resection (mean tumor residue 0,25cc) and subtotal resection in 2 patients who presented with an extracranial extension of the tumor (mean tumor residue 2,44cc). Both patients had received upfront additional GKRS. The three patients who presented with preoperative CN IX & X injuries recovered within 6months after surgery. All of the five patients freed from any preoperative CNs IX & X symptoms experienced transient (80%) or definitive (one patient) disturbances after surgery. They all improved within 6months but one who required long term gastrostomy feeding tube. This patient harbored a schwannoma originating from the glossopharyngeal nerve, which could not be anatomically preserved during surgery. Tumor control was achieved in 100% of cases with a mean follow-up of 91months. LCN schwannomas could be surgically removed through a less aggressive non-radical resection strategy with acceptable functional results and excellent tumor control.

The mandibular distraction osteogenesis; the key dental technique to success in a neonate with Pierre Robin’s sequence – A case report

A 15-day female neonate term small for gestational age with Pierre Robin Sequence was presented with respiratory distress, requiring respiratory care. The mandibular distraction surgery was performed for micrognathia and progressive respiratory distress. Gradually, she improved and was discharged home on gastrostomy tube feeding. This case underscores the importance of dentistry in the neonatal management of complicated Pierre Robin Sequence successfully.

Assessing the Dependence of Feeding Gastrostomy Tube in Patients of Head and Neck Carcinomas

Objective: To investigate the dependency on feeding gastrostomy tubes in patients with head and neck cancers treated with radiotherapy alone or concurrent chemo-radiotherapy. Study Design: Retrospective longitudinal study. Place and Duration of Study: Combined Military Hospital, Rawalpindi and Shaukat Khanum Hospital, Peshawar Pakistan, from Jan and Jul 2022. Methodology: A total of 115 patients with head and neck cancers having no baseline dysphagia and having gastrostomy tubes were included. All had received an equivalent of 60 greys in 30 fractions or more of radiotherapy. Their swallowing was evaluated weekly during radiotherapy and then every 4–6 weeks on post-treatment follow-up. The total time duration of patient dependency on feeding gastrostomy tube after treatment completion was noted for each head and neck cancer subsite.Results: Of a total of 115 patients, 49(43%) of the patients had nasopharyngeal cancers, 22(19%) had laryngeal, 29(24%) oral cavity, 7(6%) hypopharyngeal and 9(8%) had cervical esophageal cancers. Proportion retaining gastrostomy tube for more than six months of treatment was 8.7% (median duration of retention was five months) with hypopharyngeal, nasopharyngeal, oral cavity, and laryngeal cancer were 14%, 9%, 9% and 5%, respectively. Conclusion: The proportion of patients with head and neck cancers requiring more than six months of a gastrostomy tube is 5-14%. Baseline assessment of swallowing and nutrition and prophylactic feeding gastrostomy can avoid treatment interruptions. Longer duration of retention of a gastrostomy tube is associated with poor quality of life in head and neck cancer patients receiving radiation or concurrent chemo-radiation.

The effect of gastrostomy tube feeding on growth in children with chronic kidney disease and on dialysis.

Gastrostomy tube (GT) feeding is used to promote nutrition and growth in children with chronic kidney disease (CKD). We explored the relationship between gastrostomy feeding and growth parameters in children with CKD, looking specifically at the nutritional composition of feeds. Children with CKD stages 3-5 or on dialysis in a tertiary children's kidney unit were studied. Data on anthropometry, biochemistry, and nutritional composition of feeds were collected from the time of GT insertion for 3years or until transplantation. Forty children (18 female) were included. Nineteen children were on peritoneal dialysis, 8 on hemodialysis, and 13 had CKD stages 3-5. The median (interquartile range [IQR]) age at GT insertion was 1.26 (0.61-3.58) years, with 31 (77.5%) under 5years of age. The median duration of gastrostomy feeding was 5.32 (3.05-6.31) years. None received growth hormone treatment. Children showed a significant increase in weight standard deviation score (SDS) (p = 0.0005), weight-for-height SDS (p = 0.0007) and body mass index (BMI) SDS (p < 0.0001). None of the children developed obesity. Although not statistically significant, the median height-SDS increased into the normal range (from -2.29 to -1.85). Weight-SDS positively correlated with the percentage of energy requirements from feeds (p = 0.02), and the BMI-SDS correlated with the percentage of total energy intake as fat (p < 0.001). GT feeding improves weight-SDS and BMI-SDS without leading to obesity. GT feeding improved height-SDS but this did not reach statistical significance, suggesting that factors in addition to nutritional optimization need to be considered for statural growth.

Supporting people with Motor Neuron Disease (MND) to make decisions about gastrostomy feeding tube placement: a survey of UK healthcare professionals’ practice and beliefs

Objective Understand the practice and beliefs of healthcare professionals (HCPs) supporting the decision-making of people with MND (pwMND) about gastrostomy placement, including identifying differences between professions. Methods An online cross-sectional survey disseminated to HCPs who support the decision-making of pwMND about gastrostomy placement. Results A total of 139 participants completed the survey including representation from a range of healthcare professions. A third (36/101, 36%) initiated discussions about gastrostomy later in practice than they believed was ideal. In relation to the outcome of declining compared to accepting gastrostomy, participants were more likely to discuss aspiration (80% vs. 68%), choking (76% vs. 58%) and prognosis (36% vs. 22%). Participants believed gastrostomies should be placed after a mean 8.1% weight loss since symptom-onset. More participants favored gastrostomy placement before pwMND presented with respiratory symptoms (45%) compared to onset of dysphagia (11%). Half believed pwMND placed gastrostomies too late. Participants were more likely to ‘often’/‘always’ recommend pwMND to have a gastrostomy (23%) than continue without (7%) or decline (4%) gastrostomy, when believing these were the best option for pwMND. Nurses and dietitians discussed the broadest range of information, while doctors were more likely to discuss mortality risk and prognosis. Conclusion There is variation in HCPs practice and beliefs about initiating discussions, the sharing of information and recommendations, and timing, about gastrostomy placement. The information shared varies by profession and there is evidence of sub-optimal communication between HCPs. Further research is required to understand how these findings may impact on the decision-making of pwMND about gastrostomy.

Pre-hospitalization dysphagia and feeding tube placement in nursing home residents with advanced dementia.

Despite research demonstrating the risks of using feeding tubes in persons with advanced dementia, they continue to be placed. The natural history of dysphagia among patients with advanced dementia has not been examined. We conducted a secondary analysis of a national cohort of persons with advanced dementia staying at a nursing home stay before hospitalization to examine (1) pre-hospitalization dysphagia prevalence and (2) risk of feeding tube placement during hospitalization based on preexisting dysphagia. A retrospective cohort study consisting of all nursing home (NH) residents (≥66 years) with advanced dementia (Cognitive Function Scale score ≥2), a hospitalization between 2013-2017, and a Minimum Data Set (MDS) 3.0 assessment within 120 days before hospitalization. Pre-hospitalization dysphagia status and surgically placed feeding tube insertion during hospitalization were determined by MDS 3.0 swallowing items and ICD-9 codes, respectively. A multivariate logistic model clustering on hospital was used to examine the association of dysphagia with percutaneous endoscopic gastrostomy (PEG) feeding tube placement after adjustment for confounders. Between 2013 and 2017, 889,983 persons with NH stay with advanced dementia (mean age: 84.5, SD: 7.5, and 63.5% female) were hospitalized. Pre-hospitalization dysphagia was documented in 5.4% (n = 47,574) and characterized by oral dysphagia (n = 21,438, 2.4%), pharyngeal dysphagia (n = 24,257, 2.7%), and general swallowing complaints/pain (n = 14,928, 1.7%). Overall, PEG feeding tubes were placed in 3529 patients (11.2%) with pre-hospitalization dysphagia, whereas 27,893 (88.8%) did not have pre-hospitalization dysphagia according to MDS 3.0 items. Feeding tube placement risk increased with the number of dysphagia items noted on the pre-hospitalization MDS (6 vs. 0 dysphagia variables: OR = 5.43, 95% CI: 3.19-9.27). Based on MDS 3.0 assessment, only 11% of PEG feeding tubes were inserted in persons with prior dysphagia. Future research is needed on whether this represents inadequate assessment or the impact of potentially reversible intercurrent illness resulting in feeding tube placement.

Assessing the dependence on a feeding gastrostomy tube in patients with head and neck cancer: results from a high-volume cancer centre in Pakistan

Assessing the dependence on a feeding gastrostomy tube in patients with head and neck cancer: results from a high-volume cancer centre in Pakistan

Bortezomib Induced Peripheral and Severe Autonomic Neuropathy Characterized By Dizziness, Orthostatic Hypotension and Weight Loss

Background It is well known that Bortezomib (B), a proteasome inhibitor used in the treatment of Multiple Myeloma (MM) causes peripheral neuropathy in an estimated 75% of patients and compromises their quality of life. There are reports of dizziness, muscle weakness and other unusual neurologic complications caused by B. Among patients that received B based induction, we observed peripheral neuropathy as expected. In addition, in a small subset we observed profound weight loss, dizziness, orthostatic hypotension (OH) and diarrhea. Some patients with weight loss required appetite stimulants and patients with OH/dizziness required medication for symptom control. The conglomeration of symptoms frequently impairs patients' performance status requiring interruption of therapy. B was given in combination with lenalidomide and dexamethasone (VRD) but we feel the neuropathic symptoms are more due to B since the combination of just lenalidomide and dexamethasone is not known to cause such complications. There are few publications on autonomic neuropathy (AN) caused by B but we believe it is under recognized and under diagnosed. Herein we report a series of patients managed at our center that presented with significant weight loss and dizziness suggestive of AN, prompting us to explore further and bring awareness to this problem. Methods From January 2018 to July 2023, patients with MM treated in our own practice and patients induced by our referring practices and sent to our center for transplant were evaluated. We identified patients who complained of significant weight loss and dizziness and reviewed medical records, looked at the characteristics they exhibited, and identified a pattern of symptoms and clinical course. Statistics are descriptive and this retrospective study was approved by our Institutional review board. Results Sixteen patients were noted to have symptoms suggestive of AN. 13 of 16 received VRD and 3 received Daratumumab, B and dexamethasone-based induction. B was administered subcutaneously and given twice weekly. The median age was 62.5 years (range 51-76). Ten were African American and 6 White; 6 female, 4 had diabetes but no neuropathy, 10 had bone disease, 5 renal failure at presentation. The interval between initiation of therapy and AN symptoms was a median of 117 days (range 50-219) and the median B dose was 20.8 mg/M 2 (range 11.7-40.3 mg/M 2). All 16 patients had weight loss and was the most recognizable symptom. The median weight loss and percentage weight loss (compared to baseline weight) were 18.2 Kgs (range 6.7-39.14 Kgs) and 19% (range 6-41%) respectively. 10 of 16 patients had loss of appetite and 9 had diarrhea. Further treatment was held due to decline in performance status in 14 patients. Nine patients received appetite stimulants; 2 megestrol and 7 dronabinol. OH and an increase in heart rate in the standing position was seen in all 16 patients. 11 of the 16 patients had dizziness; 3 patients received fludrocortisone and one received midodrine. 14 of 16 patients also had peripheral neuropathy of whom 13 required medications for neuropathic pain and 14 required narcotic analgesics. Conclusion 14 of 16 patients received a transplant and 2 declined. Transplant was delayed by 6 months (range 2-11) to enable recovery and the end-point was weight gain, resolution of OH and clinical improvement. Post-transplant 4 patients had persistent diarrhea and 1 had persistent dizziness. One patient developed severe mucositis, dysphagia, poor appetite and required hyperalimentation, nasogastric feeding and a feeding gastrostomy tube. 9 of 14 patients had persistent peripheral neuropathy and are using medications. Two of the 16 patients progressed and received salvage treatment one of the two is now deceased. With a median follow up of 26.35 (range 8.47-53.6) months, the median survival since diagnosis is 28.72 months. Severe AN characterized by weight loss, dizziness, OH in association with loss of appetite, diarrhea and painful neuropathy is an under recognized complication of Bortezomib. This generally results in interruption of disease directed therapy and delays autologous transplantation. Transplantation without resolution of symptoms could possibly worsen the morbidity and delay post-transplant recovery. To the best of our knowledge, we are the first group to report a series of patients with this symptom complex and strongly feel it requires further study in a larger cohort.

S4236 Cutaneous Myiasis at the Feeding Gastrostomy Tube Stoma Site: A Rare Clinical Presentation

S4236 Cutaneous Myiasis at the Feeding Gastrostomy Tube Stoma Site: A Rare Clinical Presentation

Advances and challenges of gastrostomy insertion in children.

When oral feeding cannot provide adequate nutritional support to children, enteral tube feeding becomes a necessity. The overall aim is to ultimately promote appropriate growth, improve the patient's quality of life and increase carer satisfaction. Nasogastric tube feeding is considered appropriate on a short-term basis. Alternatively, gastrostomy feeding offers a more convenient and safer feeding option especially as it does not require frequent replacements, and carries a lower risk of complications. Gastrostomy tube feeding should be considered when nasogastric tube feeding is required for more than 2-3 wk as per the ESPEN guidelines on artificial enteral nutrition. Several techniques can be used to insert gastrostomies in children including endoscopic, image guided and surgical gastrostomy insertion whether open or laparoscopic. Each technique has its own advantages and disadvantages. The timing of gastrostomy insertion, device choice and method of insertion is dependent on the local expertise, patient requirements and family preference, and should be individualized with a multidisciplinary team approach. We aim to review gastrostomy insertion in children including indications, contraindications, history of gastrostomy, insertion techniques and complications.

A co-designed online education resource on gastrostomy feeding for parents and caregivers to support clinical care.

Children with complex needs and severe disability may undergo gastrostomy insertion to support feeding difficulties. Parent education programs are critical components of clinical care pathways but there is little information on parent-reported educational needs. This study describes the collaborative process that yielded a resource to assist parents considering gastrostomy tube placement for their children, and the evaluation of the resource. A qualitative descriptive study was conducted to identify parent needs for gastrostomy education. Based on these data and co-designing with parents with a child with gastrostomy tubes, an online resource comprising video and written materials was developed. Twenty parents then evaluated its suitability for parent learning. Data describing parent needs were coded into categories which represented the gastrostomy "journey" - Decision Making, Hospital Stay and Living with Gastrostomy. Called Nourish, the gastrostomy training resource comprised 19 videos and 18 accompanying worksheets. Twenty parent caregivers rated it highly for its support for learning, confidence building and planning. The process that created Nourish generated a useful resource for parents considering or managing gastrostomy tube feedings for their children. Positive feedback suggests that this approach could be a valuable adjunct to clinical care.

Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease.

Maintaining adequate nutrition is critical for people with amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND). Enteral tube feeding is offered to people experiencing difficulty swallowing (dysphagia) to prevent weight loss and aspiration pneumonia. Among the types of enteral tube feeding, percutaneous endoscopic gastrostomy (PEG) is the typical procedure offered to people with ALS and will be mainly discussed here. To examine the effectiveness of percutaneous endoscopic gastrostomy or other enteral tube feeding in people with ALS, compared to oral feeds without enteral tube feeding on: 1. survival; 2. nutritional status; 3. quality of life. To examine the incidence of minor and major complications of percutaneous endoscopic gastrostomy (PEG) and other enteral tube feeding procedures in people with ALS. On 3 January 2020 and 6 February 2021, we searched the Cochrane Neuromuscular Specialised Register, CENTRAL, MEDLINE. Embase, ClinicalTrials.gov and WHO ICTRP. We screened the results to identify randomized controlled studies on enteral tube feeding in ALS. We reviewed all references from the search in published articles to identify any additional references. We included randomized controlled trials (RCTs), quasi-RCTs, and cross-over trials evaluating the effectiveness and complications of PEG or other enteral tube feeding placement in ALS. We used standard methodological procedures expected by Cochrane. We found no RCTs or quasi-RCTs comparing the effectiveness of enteral tube feeding versus oral feeds without enteral tube feeding. There are no RCTs or quasi-RCTs to indicate whether enteral tube feeding is effective compared to continuation of oral feeding for any of the outcome measures. Such RCTs are very unlikely to be performed for ethical reasons. RCTs evaluating the effect of different enteral tube insertion techniques and timings of tube placement on survival and quality of life of people with ALS dysphagia are feasible and warranted.

Lived Experiences of People With Amyotrophic Lateral Sclerosis With Percutaneous Endoscopic Gastrostomy Feeding Tubes

Abstract Date Presented 04/22/2023 Lived experiences of people with amyotrophic lateral sclerosis (pALS) who have percutaneous endoscopic gastrostomy (PEG) are explored. Outcomes will provide insight into the factors that guide the decision-making process and the impact on occupation. Primary Author and Speaker: Gioia Ciani Additional Authors and Speakers: Gary Grimaldi, Ian Sarnataro

Real-world analysis of healthcare resource utilization by patients with X-linked myotubular myopathy (XLMTM) in the United States

BackgroundX-linked myotubular myopathy (XLMTM) is a rare, life-threatening congenital myopathy with multisystem involvement, often requiring invasive ventilator support, gastrostomy tube feeding, and wheelchair use. Understanding healthcare resource utilization in patients with XLMTM is important for development of targeted therapies but data are limited.MethodsWe analyzed individual medical codes as governed by Healthcare Common Procedure Coding System, Current Procedural Terminology, and International Classification of Diseases, 10th Revision (ICD-10) for a defined cohort of XLMTM patients within a US medical claims database. Using third-party tokenization software, we defined a cohort of XLMTM patient tokens from a de-identified dataset in a research registry of diagnostically confirmed XLMTM patients and de-identified data from a genetic testing company. After approval of an ICD-10 diagnosis code for XLMTM (G71.220) in October 2020, we identified additional patients.ResultsA total of 192 males with a diagnosis of XLMTM were included: 80 patient tokens and 112 patients with the new ICD-10 code. From 2016 to 2020, the annual number of patients with claims increased from 120 to 154 and the average number of claims per patient per year increased from 93 to 134. Of 146 patients coded with hospitalization claims, 80 patients (55%) were first hospitalized between 0 and 4 years of age. Across all patients, 31% were hospitalized 1–2 times, 32% 3–9 times, and 14% ≥ 10 times. Patients received care from multiple specialty practices: pulmonology (53%), pediatrics (47%), neurology (34%), and critical care medicine (31%). The most common conditions and procedures related to XLMTM were respiratory events (82%), ventilation management (82%), feeding difficulties (81%), feeding support (72%), gastrostomy (69%), and tracheostomy (64%). Nearly all patients with respiratory events had chronic respiratory claims (96%). The most frequent diagnostic codes were those investigating hepatobiliary abnormalities.ConclusionsThis innovative medical claims analysis shows substantial healthcare resource use in XLMTM patients that increased over the last 5 years. Most patients required respiratory and feeding support and experienced multiple hospitalizations throughout childhood and beyond for those that survived. This pattern delineation will inform outcome assessments with the emergence of novel therapies and supportive care measures.

Severe respiratory distress secondary to pharyngeal perforation during endoscopic gastrostomy tube removal: a clinical case report

We present the case of a 60-year-old patient with advanced chronic obstructive pulmonary disease (COPD), who presented for planned endoscopic removal of her gastrostomy feeding tube, which was inserted for nutritional status optimization prior to lung transplantation. The procedure was complicated by accidental blockage of the device at the pharyngeal level, causing a transmural laceration. Rapid respiratory distress developed with subcutaneous emphysema that led to the intubation of the patient. A new endoscopic retrieval was attempted but failed, and the patient was sent to the operating room after a cervical and thoracic CT scan that showed the blocked piece in the cervical wall, in addition to diffuse subcutaneous emphysema, a large pneumomediastinum, and a left pneumothorax. The surgery consisted of a left cervicotomy, a pharyngeal incision, and retrieval of the trapped parts. The patient was sent to the intensive care unit (ICU) where she could be weaned and extubated 1 week later.