Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis.

BACKGROUND: People with motor neuron disease (pwMND) are routinely offered gastrostomy feeding tube placement and (non-invasive and invasive) ventilation to manage the functional decline associated with the disease. This study aimed to synthesise the findings from the qualitative literature to understand how individual, clinical team and organisational factors influence pwMND decisions about these interventions. METHODS: The study design was guided by the enhancing transparency in reporting the synthesis of qualitative research (ENTREC) statement. The search of five bibliography databases and an extensive supplementary search strategy identified 27 papers that included qualitative accounts of pwMND, caregivers and healthcare professionals' (HCPs) experiences of making decisions about gastrostomy and ventilation. The findings from each study were included in a thematic synthesis. FINDINGS: Making decisions about interventions is an emotional rather than simply a functional issue for pwMND. The interventions can signal an end to normality, and increasing dependence, where pwMND consider the balance between quality of life and extending survival. Interactions with multiple HCPs and caregivers can influence the process of decision-making and the decisions made. These interactions contribute to the autonomy pwMND are able to exert during decision-making. HCPs can both promote and threaten pwMND perceived agency over decisions through how they approach discussions about these interventions. Though there is uncertainty over the timing of interventions, pwMND who agree to interventions report reaching a tipping point where they accept the need for change. CONCLUSION: Discussion of gastrostomy and ventilation options generate an emotional response in pwMND. Decisions are the consequence of interactions with multiple external agents, including HCPs treading a complex ethical path when trying to improve health outcomes while respecting pwMND right to autonomy. Future decision support interventions that address the emotional response and seek to support autonomy have the potential to enable pwMND to make informed and timely decisions about gastrostomy placement and ventilation. PATIENT OR PUBLIC CONTRIBUTION: The lead author collaborated with several patient and participant involvement (PPI) groups with regards to the conceptualisation and design of this project. Decisions that have been influenced by discussions with multiple PPI panels include widening the scope of decisions about ventilation in addition to gastrostomy placement and the perceptions of all stakeholders involved (i.e., pwMND, caregivers and HCPs).

Requested withdrawal of gastrostomy feeding in motor neurone disease.

NICE (National Institute for Health & Care Excellence) guidance recommends that healthcare professionals with expertise in palliative care should be an integral part of the multidisciplinary team in managing patients with motor neuron disease (MND). Those in the poorest prognostic group may benefit from early referral to help manage rapidly progressive symptoms, psychological distress and offer additional support with complex decision-making and early robust advance care planning. Patients frequently develop dysphagia and gastrostomy feeding can be used to prolong survival and improve quality of life. As the disease progresses patients may request withdrawal of life-sustaining treatment such as gastrostomy feeding; however, a literature search found no evidence or guidance on how best to facilitate this. We present the case of a patient with MND admitted to the hospice inpatient unit requesting withdrawal of gastrostomy feeding, outline the challenges and need for further consensus guidelines to inform practice.

Risk factors for gastrostomy tube dependence in transoral robotic surgery patients.

OBJECTIVES: To determine the rate of gastrostomy tube dependence after transoral robotic surgery (TORS), and to determine which patient or surgical factors increase the likelihood of gastrostomy tube dependence. METHODS: Retrospective chart review of all patients who underwent TORS for oropharyngeal squamous cell carcinoma (OPSCC) at a single institution from January 2011 through July 2016. Patients who underwent TORS for recurrent OPSCC were excluded. Primary outcome was gastrostomy tube (g-tube) dependence. Univariable and multivariable logistic regression were performed to identify risk factors for g-tube dependence at 3-months and 1-year. RESULTS: A total of 231 patients underwent TORS during the study period. At 3-month follow-up, 58/226 patients (25.7%) required g-tube. At 1-year and 2-year follow-up, 8/203 (3.9%) and 5/176 (2.8%), remained dependent on g-tube, respectively. Advanced T stage (T3) (OR = 6.07; 95% CI, 1.28-28.9) and discharge from the hospital with enteral access (OR = 7.50; 95% CI, 1.37-41.1) were independently associated with increased risk of postoperative gastrostomy tube dependence at 1 year on multivariable analysis. CONCLUSIONS: Long-term gastrostomy tube dependence following TORS is rare, particularly in patients that receive surgery alone. Patients with advanced T stage tumors have poorer functional outcomes. Early functional outcomes, as early as discharge from the hospital, are a strong predictor for long-term functional outcomes.

Outcomes for gastrostomy-fed children and their parents: qualitative findings from the 'Your Tube' study.

AIM: To identify child and parent outcomes relevant to having a gastrostomy, and to specify outcomes believed to be particularly salient to type of diet (formula vs blended food). METHOD: Twenty parents, two children (both 12y), and 41 professionals (dietitians [n=10]; nurses [n=12]; paediatricians [n=12]; speech and language therapists [n=7)]) were recruited. Parents and children were interviewed; professionals participated in focus groups. Children (2-18y) represented included those on formula (n=11), blended-food (n=7), and mixed (n=2) diets. All had been tube-fed for at least 6 months. Neurological, genetic, and metabolic conditions were represented. RESULTS: Participants identified a range of children's outcomes relevant to a gastrostomy, including physical health, gastrointestinal symptoms, sleep, and time spent feeding. The children described experiences of exclusion caused by being tube-fed. Time, sleep, and emotional health were regarded as most salient to understanding parents' gastrostomy outcomes. Participants believed type of diet would most likely effect gastrointestinal symptoms, time spent feeding, sleep, and physical health. INTERPRETATION: Findings indicate a number of refinements to, and allow further specification of, the current 'initial' core outcome set for tube-fed children. Findings also have implications for choice of outcomes measures. Further qualitative research with children and young people is needed. What this paper adds Sleep is a key outcome for children and parents. Gastrointestinal symptoms and physical health were regarded as outcomes most likely to be affected by type of diet. Well-being and participation were identified as key distal outcomes. Gastrostomies are complex interventions. Further specification of the core outcome set is possible.

Consumo de alcohol, síntomas neurológicos y retos diagnósticos en un paciente con una gastrostomía percutánea / Alcohol consumption, neurological symptoms and diagnostic challenges in a patient with a percutaneous endoscopic gastrostomy

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Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients' decision making.

OBJECTIVES: Gastrostomy decision making is a complicated, multifaceted process for people with motor neuron disease (MND). This study explored demographic and disease-related factors that may impact on gastrostomy uptake; and reasons why people with MND accepted or declined gastrostomy, with a focus on how perceptions of swallowing and nutrition may influence decision making. DESIGN: Prospective, cross sectional, mixed methods. SETTING: An Australian multidisciplinary, specialty MND Service. PARTICIPANTS: 33 patients were recommended gastrostomy by the treating medical specialist. 16 of 33 were invited to participate in the prospective decision making study; of whom 10 provided informed consent. PRIMARY AND SECONDARY OUTCOME MEASURES: Demographic and disease-related factors contributing to uptake are described. A stepped approach was applied to gain a comprehensive understanding of why people with MND accept or decline gastrostomy. Instruments included standardised assessments, nutrition survey and semistructured interview. Data were collected at three separate appointments, spanning a 3-week period. RESULTS: Gastrostomy uptake was 73% following medical specialist recommendation. Participants took days, weeks or months to consider their preferences, with lengthy hospital waiting times for the procedure. Gender, site of onset and rate of disease progression were observed to contribute to uptake. Age and symptom duration did not. Integration of quantitative and qualitative data suggests that patient perceptions of swallowing and nutrition contribute to gastrostomy acceptance; however, the decision making process is heterogeneous and these factors may not be the sole or primary reasons for acceptance. Other reported factors included: reducing carer burden, improving quality of life, increasing independence, continuing participation in social outings and gaining control. CONCLUSIONS: Future research may give greater insight into how healthcare organisations can better facilitate gastrostomy decision making, to meet the needs of people living with MND. Larger, prospective, multisite studies may build on these findings to better inform clinical guidelines and minimise the impacts of delayed gastrostomy insertion.

Developing a web-based patient decision aid for gastrostomy in motor neuron disease: a study protocol.

INTRODUCTION: Motor neuron disease (MND) is a progressive, incurable disease, characterised by degeneration of the nerves in the brain and spinal cord. Due to the multisystem effects of the disease, patients are faced with many complex, time-sensitive decisions, one of which is the decision on gastrostomy feeding. There are currently no published decision aids (DAs) to support patients making this decision in the UK. This study will develop and pilot a patient DA to provide evidence-based information on gastrostomy placement and feeding that is relevant to people with MND; communicate the risks and benefits associated with each option; check understanding and clarify personal values and preferences, enabling patients to make a decision congruent with their values and appropriate for them. METHODS AND ANALYSIS: A two-phase process, observing the International Patient Decision Aid Standards, will be used to develop the DA, over 24 months starting January 2019. Phase 1 will use literature reviews and stakeholder interviews and surveys to identify essential content for the DA, and explore the best way to present this. In the second phase, a prototype DA will be developed and revised using stakeholder feedback in an iterative process. Stakeholders will include individuals with MND, their carers and the healthcare professionals working with them. ETHICS AND DISSEMINATION: Ethical approval for the study has been granted by West of Scotland Research Ethics Service, reference 19/WS/0078. Study findings will be disseminated through academic and non-academic publications, conference presentations, stakeholder websites and social media. A feasibility study will follow to explore the acceptability and practicality of the DA for patients, carers and HCPs in practice and to assess whether the DA shows promise of being beneficial for the intended population.

Percutaneous venting gastrostomy/gastrojejunostomy for malignant bowel obstruction: a qualitative study.

OBJECTIVE: Malignant bowel obstruction (MBO) is a complication of advanced malignancy and is associated with a short prognosis. MBO can infrequently be reversed by surgery or stenting. The focus of treatment is usually symptomatic management, of which percutaneous venting gastrostomy/gastrojejunostomy (PVG) is one consideration. There is little data considering the impact of PVG on quality of life; we therefore aimed to explore this. METHODS: We identified patients with a PVG inserted for MBO and those who consented to participate were interviewed. The interviews were audio recorded, transcribed and analysed using Framework. Alongside patient interviews, a data collection tool was designed and used to record patient demographics and medical information, enabling us to contextualise individual patients' experiences. RESULTS: 11 patients were interviewed and 10 patients' data were analysed (1 patient withdrew). No patients regretted having a PVG and many benefitted symptomatically and psychosocially. Challenges encountered included practical issues, pain and PVG tube complications. CONCLUSIONS: The analysis provided a detailed insight into the impact of PVG insertion and demonstrated that each patient's experience is shaped by a complex interplay of individual factors, thereby highlighting the need to improve referral criteria and individualise patient selection. Other service improvements include enhancing information provision for patients and training for healthcare professionals, thus aiming to mitigate the challenges experienced. Our study is the first in-depth exploration of patients' experiences of PVG at a tertiary cancer centre. Ensuring that the insights from this study are fed back to guide future service provision is critical in enhancing future patient experiences.

The Effect of Gastrostomy Placement on Health-Related Quality of Life in Children.

BACKGROUND AND PURPOSE: A gastrostomy placement (GP) aims to improve nutritional status and health-related quality of life (HRQoL) in children who require long-term enteral tube feeding. We evaluated the effect of GP on HRQoL. METHODS: A prospective, longitudinal cohort study was performed including patients referred for laparoscopic GP. Children and/or caregivers were asked to fill out the validated PedsQL™ questionnaire before and 3 months after surgery. The aim was to compare preoperative with postoperative HRQoL and to identify predictors of HRQoL. RESULTS: Fifty patients were included with a median age of 3.4 years (interquartile range 1.4-5.6). After GP, total HRQoL did not significantly increase (p = 0.30). However, psychosocial health significantly increased: 55.8 (standard deviation ±20.8) to 61.2 (±19.6; p = 0.03) on a 100-point scale. This was mainly owing to an increase in social HRQoL: 58.2 (±32.3) to 68.3 (±27.9; p = 0.04). HRQoL both before and after GP was significantly lower in children with neurologic impairment (p < 0.0005). However, neurologic impairment did not influence the effect of surgery on HRQoL (p = 0.66). Low preoperative body mass index was a predictor for improvement in HRQoL after GP. CONCLUSIONS: After GP in children, psychosocial HRQoL improved significantly. This was mainly owing to an improvement in social HRQoL. LEVEL OF EVIDENCE: IV.

Evaluation of a Home-Based Behavioral Treatment Model for Children With Tube Dependency.

OBJECTIVE: To evaluate a home-based behavioral treatment model for children with tube dependency. METHODS: Nine children (aged 4-14 years) dependent on nasogastric and gastrostomy tubes were consecutively admitted into a home-based behavioral treatment program. A psychologist specializing in applied behavior analysis led the assessment and treatment phases with the support of caregivers and a multidisciplinary team. Caregivers participated in a caregiver training program and continued the intervention once the service was discontinued. We conducted follow-up visits up to 12 months after treatment. The program was evaluated with a multiple-baseline across participants design. We computed on-treatment and intention-to-treat effects according to the Hedges-Pustejovsky-Shadish model. We monitored behavioral (food acceptance and swallowing) and nutritional outcomes (body weight, oral intake, and tube intake), treatment acceptability and satisfaction, caregiver stress, and estimated treatment cost savings. RESULTS: Food acceptance, swallowing, oral intake, and tube intake demonstrated large treatment gains relative to pretreatment levels (effect size range of the intention-to-treat analysis = 0.74-2.1). All participants maintained or increased their body weight. Follow-up effect sizes indicated further improvements. By the final follow-up assessment, six out of the nine children had ceased tube feeding, and one had tube feeds reduced. Caregivers and health professionals provided strong ratings of treatment satisfaction. The cost-savings analysis suggested that a home-based treatment may be a cost-effective alternative to prolonged tube feeding as well as to other treatment approaches. CONCLUSIONS: This study provides evidence supporting home-based multicomponent behavioral interventions in the treatment of pediatric feeding disorders. CLINICAL TRIAL IDENTIFIER: ACTRN12614001127695, https://goo.gl/XSQ4ZH.

Development and Pilot Testing of a Simulation to Study How Physicians Facilitate Surrogate Decision Making Based on Critically Ill Patients' Values and Preferences.

CONTEXT: There are no evidence-based programs to train physicians to facilitate shared decision making based on incapacitated intensive care unit patients' values and preferences. OBJECTIVES: The objective of this study was to develop a high-fidelity simulation to fill this gap. METHODS: Case development involved six steps: 1) drafting a case about an elderly patient receiving prolonged mechanical ventilation; 2) engaging an expert advisory board to optimize case content; 3) revising the case based on advisory board input; 4) training actors to portray the case patient's daughter; 5) obtaining physician feedback on the simulation; and 6) revising the case based on their feedback. We conducted a cross-sectional pilot study with 50 physicians to assess feasibility and acceptability, defined a priori as an enrollment rate >40 physicians/year, study procedures <75 minutes/participant, >95% actor adherence to standardization rules, and high physician ratings of realism and acceptability. RESULTS: Advisory panel feedback yielded two modifications: 1) refocusing the case on decision making about tracheostomy and percutaneous gastrostomy and 2) making the patient's values more authentic. Physician feedback yielded two additional modifications: 1) reducing how readily the actor divulged the patient's values and 2) making her more emotional. All 50 physicians enrolled in the pilot study over 11 months completed study procedures in <75 minutes. Actor adherence to standardization rules was 95.8%. Physicians' mean ratings of realism and acceptability were 8.4 and 9.1, respectively, on a 10-point scale. CONCLUSION: Simulation is feasible, is acceptable, and can be adequately standardized to study physicians' skills for facilitating surrogate decision making based on an incapacitated intensive care unit patient's values and preferences.

Patient and carer experience of blended diet via gastrostomy: a qualitative study.

BACKGROUND: Home enteral feeding is becoming increasingly prevalent within the UK. The use of commercial prescription formula is considered best practice; however, increasingly, patients are choosing to use blended diet via gastrostomy. There is anecdotal evidence suggesting both physical and social benefits, although there are concerns regarding the safety and efficacy of this method of feeding. The present study explores the experiences of patients who are currently using or have used this method of feeding in the past. METHODS: Patients currently using or having previously used blended diet via gastrostomy were identified. Patients and their carers, where applicable, were invited to participate in a semi-structured interview. The data were transcribed and themes were identified. RESULTS: Thematic analysis of the data collected showed that patients had an overall positive experience of blended diet with few or no identified disadvantages. Participants reported improvements in gastrointestinal symptoms, as well as general wellbeing, in addition to the social benefits of their family member being included in family mealtimes. Reference was made to the lack of support for this method of feeding and the desire for blended diet to be offered as an alternative to commercial enteral feed. CONCLUSIONS: This research highlights the benefits of blended diet via gastrostomy as an alternative to commercial formula. More research is needed to develop evidence-based guidelines for patients and the healthcare professionals supporting them.

Blended diets for gastrostomy fed children and young people: a scoping review.

BACKGROUND: The present review aimed to identify what is known about the use of blended diets in gastrostomy fed children and young people (i.e. children and young people refers to those who are aged up to 25 years with special educational needs or a disability in accordance with Part 3 of the Children and Family Act 2014; within the review, the word children is used for simplicity but encompasses young people too) and to identify gaps in the literature on this topic to inform future research and policy. METHODS: A scoping review methodology was used searching the online databases PUBMED, PsychINFO, CINAHL, SCOPUS and AMED, EMBASE for articles that addressed issues pertaining to blended diets. The review identified a broad range of literature, regardless of study design, and described and evaluated the quality, range and nature of research activity related to the use of blenderised diets. RESULTS: Forty-three studies were included in the review. The studies focused on nutrition, equipment, the views of carers and patients, and the views of professionals. Several studies described the lack of evidence regarding pros and cons of blended diets and highlighted the need for further research into the field. CONCLUSIONS: There were gaps in the evidence base regarding the impact of blended diets on the health and well-being of the children who receive them and upon the carers who feed the children. The nutritional impact of blended diets is not fully understood and the knowledge and views of professionals involved in the care of those receiving blended diets varies.

Dilemmas for guardians of advanced dementia patients regarding tube feeding.

Background: advanced dementia is an incurable illness, its last stage marked by inability to eat. Tube feeding was deemed a helpful solution at this stage, but in recent years its inefficiency has been proved, and it is no longer practiced in many countries around the world. In Israel, however, the procedure is still accepted. In the gastroenterology department at the Bnai Zion Medical Center, a serious interaction is ongoing with patients' legal guardians, where detailed information is given about the inefficiency of the tube procedure. Nevertheless, the great majority of guardians choose to have it performed. Purpose: to probe the considerations underlying the decision for gastrostomy, despite the data and the recommendations. Method: qualitative research, including participant observation at the clinic and in-depth interviews with guardians. Findings: the families of most patients did not discuss end-of-life issues with them. The overwhelming preference for using the technology was interpreted as life-saving, in contrast to comfort feeding, which was deemed euthanasia. The reasons given for the decision to tube feed were drawn from a range of outlooks: religion, the patient's earlier survival capacity, and pragmatic considerations involving relations with nursing home staff. Conclusion: study of the decision-making process of advanced dementia patients' guardians sheds light on the layers of meaning of the Israeli discourse regarding end-of-life issues.

Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study.

BACKGROUND & AIMS: Although studies demonstrate the range of impacts of home enteral feeding (HEF) on patients' lives, a dearth of evidence focussing on the decision to have a gastrostomy placed exists. The importance of taking account of patient values (i.e. their unique preferences, concerns and expectations) when considering the consequences of clinical decisions is increasingly recognised. This study explores patient's views on the role of their values in their decision to have a gastrostomy. METHODS: Using a qualitative approach and concurrent data collection and analysis, a convenience sample of 11 patients receiving HEF participated in one semi-structured interview in their own home. Participants were asked to i) consider the impact of HEF on their lives and ii) how this information could have been used in their decision making to have a gastrostomy. Interviews were transcribed verbatim and key themes were developed through inductive thematic analysis using NVivo 10 to manage the data. RESULTS: Three key themes were identified: 1. Weighing up the benefits and concerns: a positive health outcome outweighed concerns about HEF. However, being asked to explicitly consider what individuals consider to be excessive information about the impact of HEF may increase anxiety; 2. Perceptions of choice: most patients felt they were either not given a choice or that they did not have a choice as there was not a viable alternative to HEF. 3. Expectations and regret: considering values may have helped manage expectations of HEF, although the decision to place a gastrostomy was usually not regretted. CONCLUSIONS: Taking account of individual values may enable better tailoring of decision-making. How patient values are clarified during decision making processes requires further study in relation to the varied indications for gastrostomy and the time available for decision making.

Squamous Cell Carcinoma of the Peristomal Skin of a Gastrostomy: Case Study.

BACKGROUND: Primary skin tumors that develop at enteral feeding stomas are extremely rare. Ongoing surveillance of these stomas, including the peristomal skin, is essential to early diagnosis and treatment of these tumors. CASE: A 73-year-old man with an esophageal chemical burn caused by swallowing sodium hypochlorite (bleach) approximately 50 years earlier that was initially managed with esophageal exclusion and placement of a gastrostomy device for enteral feeding presented with an exophytic and painful mass of the skin adjacent to his gastrostomy site. The pathologic report confirmed differentiated squamous cell skin carcinoma. CONCLUSION: Skin tumors arising from chronic wounds or ulcers of the skin surrounding a gastrostomy device are rare but should be considered if hypergranulation tissue or a peristomal lesion appears to be nonhealing. WOC nurses are frequently consulted for care of granulomas, and close monitoring is essential for avoiding this potentially fatal complication.

Gastrostomies Preserve But Do Not Increase Quality of Life for Patients and Caregivers.

BACKGROUND & AIMS: Gastrostomies are widely used to provide long-term enteral nutrition to patients with neurologic conditions that affect swallowing (eg, following a cerebrovascular accident or for patients with motor neuron disease) or with oropharyngeal malignancies. The benefits derived from this intervention are uncertain for patients and caregivers. We conducted a prospective, multicenter cohort study to determine how gastrostomies affect health-related quality of life (HRQoL) in recipients and caregivers. METHODS: We performed a study of 100 patients who received gastrostomies (55% percutaneous endoscopic gastrostomy, 45% radiologically inserted) at 5 centers in the United Kingdom, 100 caregivers, and 200 population control subjects. We used the EuroQol-5D (comprising a questionnaire, index, visual analogue scale) to assess HRQoL for patients and caregivers before the gastrostomy insertion and then 3 months afterward; findings were compared with those from control subjects. Ten patients and 10 caregivers were also interviewed after the procedure to explore quantitative findings. Findings from the EuroQol-5D and semi-structured interviews were integrated using a mixed-methods matrix. RESULTS: Six patients died before the 3-month HRQoL reassessments. We observed no significant longitudinal changes in mean EuroQol-5D index scores for patients (0.70 before vs 0.710 after; P = .83) or caregivers (0.95 before vs 0.95 after; P = .32) following gastrostomy insertion. The semi-structured interviews revealed problems in managing gastrostomy tubes, social isolation, and psychological and emotional consequences that reduced HRQoL. CONCLUSIONS: We performed a mixed-methods prospective study of the effects of gastrostomy feeding on HRQoL. HRQoL did not significantly improve after gastrostomy insertion for patients or caregivers. The lack of significant decrease in HRQoL after the procedure indicates that gastrostomies may help maintain HRQoL. Findings have relevance to those involved in gastrostomy insertion decisions and indicate the importance of carefully selecting patients for this intervention, despite the relative ease of insertion.

Unintended Adverse Effects of Enteral Nutrition Support: Parental Perspective.

OBJECTIVES: The present study highlights the occurrence of unintended adverse effects of enteral nutrition in infancy and childhood, as viewed and reported from a parental perspective. METHODS: Quantitative analysis of a standardized questionnaire, filled out online by parents of enterally fed children. The questions focused on the nutritive and nonnutritive adverse effects, and other medical and biometric data. Data were collected from January 1, 2009 to December 31, 2013. RESULTS: The study cohort consisted of 425 infants and children with different underlying medical conditions and an average age of 2.17 (median = 1.63) years. Nasogastric tubes were used in 44.2% of all the patients, and 55.8% of the children were fed by percutaneous endoscopic gastrostomy tube. Nearly all of the children have been tube-fed since birth. A total of 56.0% of all tube-fed children showed regular gagging and retching episodes, 50.0% vomited frequently, 14.8% experienced nausea, 7.5% experienced extreme nervous perspiration during the feeding, 45.2% showed loss of appetite, 5.2% experienced local granulation tissue, and 1.9% had other skin irritations. No significant correlations could be found between age, sex, medical diagnoses, type of feeding tube, feeding schedules (bolus or continuous), and parental and child's behavior regarding the feeding situation and duration of tube feeding. CONCLUSIONS: Enteral nutrition affects the child and the whole family system on more than just nutritional level. It is suggested that children and their families should be followed-up by health professionals periodically for nutritional optimization, growth documentation, and other aspects of tube management.

The impact of gastrostomy in motor neurone disease: challenges and benefits from a patient and carer perspective.

OBJECTIVES: This study explores the experience of gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support motor neurone disease (MND) patients with dysphagia. However, there is lack of information describing patient and carer experiences following gastrostomy insertion. The effect of gastrostomy on quality of life for these patients and their family is currently not well understood. METHODS: Retrospective qualitative exploration using semistructured interviews with patients and their informal carers to elicit in-depth descriptions of their experiences and views following gastrostomy. RESULTS: 27 patients consented to the study; of these, 23 underwent a successful gastrostomy. 10 patients and 8 carers were interviewed, approximately 3 months following a successful gastrostomy. Participants described clinical complications, practical issues, time restrictions imposed by strict feeding regimens and psychological issues, which adversely impacted on quality of life. However, the establishment of a safe alternative route for feeding and medication, and the reduced worry over difficult meals and weight loss, were described by all as outweighing these negative impacts. Participants also described having received education/training on gastrostomy feeding both in hospital and in the community, which helped them to cope during the transition from oral to gastrostomy feeding. CONCLUSIONS: This study highlights the challenges and benefits of gastrostomy as well as the importance of education and information provision. Emphasis should be given to education before and after insertion along with support and care in the community. While the significant impact of gastrostomy on patients and carers should not be underestimated, the potential benefits were described as outweighing these concerns.