Malnutrition in emergency general surgery: a survey of National Emergency Laparotomy Audit Leads.

BACKGROUND: Patients who are malnourished and have emergency general surgery, such as a laparotomy, have worse outcomes than those who are not malnourished. It is paramount to identify these patients and minimise this risk. This study aimed to describe current practices in identifying malnutrition in patients undergoing a laparotomy, specifically focusing on screening, assessment, nutrition pathways and barriers encountered by clinicians. METHODS: Following piloting and validity assessment, anaesthetic and surgical National Emergency Laparotomy Audit (NELA) Leads at hospitals across England and Wales were emailed an invitation to a survey. Responses were gathered using Qualtrics. Descriptive analysis and correlation with laparotomy volume and professional role were performed in SPSSv26. University of Sheffield ethical approval was obtained (UREC 046205). The results from the survey are reported according to the CHERRIES guidelines. RESULTS: The survey was completed by 166/289 NELA Leads from 117/167 hospitals (57.4% and 70.1% response rates, respectively). Participants reported low rates of nutritional screening (42/166; 25.3%) and assessment (26/166; 15.7%) for malnutrition preoperatively. More than one third of respondents (40.1%) had no awareness of local screening tools; indeed, the Malnutrition Universal Screening Tool (MUST) was used by approximately half of respondents (56.6%). Contrary to guidelines, NELA Leads report albumin levels continue to be used to determine malnutrition risk (73.5%; 122/166). Postoperative nutrition pathways were common (71.7%; 119/166). Reported barriers to nutritional screening and assessment included a lack of time, training and education, organisational support and ownership. Participants indicated nutrition risk is inadequately identified and is an important missing data item from NELA. There was no significant correlation with hospital laparotomy volume in relation to screening or assessment for malnutrition, the use of nutritional support pathways or organisational barriers. There was interprofessional agreement across a number of domains, although some differences did exist. CONCLUSIONS: Wide variation exists in the current practice of identifying malnutrition risk in NELA patients. Barriers include a lack of time, knowledge and ownership. Nutrition pathways that encompass the preoperative phase and incorporation of nutrition data in NELA may support improvements in care.

Health professional attitudes and perceptions of prehabilitation and nutrition before haematopoietic cell transplantation.

BACKGROUND: Nutritional prehabilitation may improve haematopoietic cell transplantation (HCT) outcomes, although little evidence exists. The present study aimed to understand healthcare professional (HCP) perceptions of prehabilitation and nutritional care pre-HCT in UK centres. METHODS: An anonymous online survey (developed and refined via content experts and piloting) was administered via email to multidisciplinary HCPs in 39 UK adult centres, between July 2021 and June 2022. Data are presented as proportions of responses. Routine provision denotes that care was provided >70% of time. RESULTS: Seventy-seven percent (n = 66) of HCPs, representing 61.5% (n = 24) of UK adult HCT centres, responded. All HCPs supported prehabilitation, proposing feasible implementation between induction chemotherapy (60.4%; n = 40) and first HCT clinic (83.3%; n = 55). Only 12.5% (n = 3) of centres had a dedicated prehabilitation service. Nutrition (87.9%; n = 58), emotional wellbeing (92.4%; n = 61) and exercise (81.8%; n = 54) were considered very important constituents. HCPs within half of the HCT centres (n = 12 centres) reported routine use of nutrition screening pre-HCT with a validated tool; 66.7% of HCPs (n = 36) reported using the malnutrition universal screening tool (MUST). Sixty-two percent (n = 41) of HCPs reported those at risk, received nutritional assessments, predominantly by dietitians (91.6%; n = 22) using the dietetic care process (58.3%; n = 14). Body mass index (BMI) was the most frequently reported body composition measure used by HCPs (70.2%, n = 33). Of 59 respondents, non-dietitians most routinely provided dietary advice pre-HCT (82.4%; n = 28 vs. 68%; n = 17, p = 0.2); including high-energy/protein/fat and neutropenic diet advice. Prophylactic enteral feeding pre-HCT was rare, indicated by low BMI and significant unintentional weight loss. Just under half (n = 25 of 59, 42.4%) HCPs reported exercise advice was given routinely pre-HCT. CONCLUSIONS: Nutrition and prehabilitation pre-HCT are considered important and deliverable by HCPs, but current provision in UK centres is limited and inconsistent.

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).

The nutritional management of people living with amyotrophic lateral sclerosis: A national survey of dietitians.

BACKGROUND: People living with amyotrophic lateral sclerosis (ALS) face many challenges with respect to taking adequate nutrition. Growing evidence links weight loss with negative prognostic outcomes. We aimed to explore the practice of dietitians in the UK with regard to the nutritional management of ALS. METHODS: A national online survey was disseminated via professional groups, social media and newsletters to UK healthcare professionals between September and November 2018. The survey examined the nutritional management of ALS. Dietitian responses are reported in the present study. RESULTS: In total, 130 dietitians responded to the survey. Two-thirds reported that ALS comprised less than 20% of their total patient caseload. Forty-two percent reported that nutritional screening took place in their organisation. One-half of dietitians reported that patients were referred for dietetic assessment at 'about the right time', although 44% reported referrals were made too late. The majority (83%) of dietitians used resting energy expenditure predictive equations not validated in ALS. When setting weight goals, dietitians reported most frequently recommending weight maintenance if the patient's body mass index was 18.5-25 kg m-2 (72%), 25-30 kg m-2 (98%), and > 30 kg m-2 (79%). In addition, 43% reported that people with ALS were not weighed sufficiently frequently. CONCLUSIONS: Although the importance of early nutritional assessment is recognised, the timeliness of dietetic input and on-going monitoring of nutritional status in ALS care might not currently be ideal. Dietitians report using energy requirement predictive equations and setting weight goals that may not promote positive outcomes. Further research is required to understand the optimal nutritional management of ALS.

Positive mood on the day of influenza vaccination predicts vaccine effectiveness: A prospective observational cohort study.

Influenza vaccination is estimated to only be effective in 17-53% of older adults. Multiple patient behaviors and psychological factors have been shown to act as 'immune modulators' sufficient to influence vaccination outcomes. However, the relative importance of such factors is unknown as they have typically been examined in isolation. The objective of the present study was to explore the effects of multiple behavioral (physical activity, nutrition, sleep) and psychological influences (stress, positive mood, negative mood) on the effectiveness of the immune response to influenza vaccination in the elderly. A prospective, diary-based longitudinal observational cohort study was conducted. One hundred and thirty-eight community-dwelling older adults (65-85years) who received the 2014/15 influenza vaccination completed repeated psycho-behavioral measures over the two weeks prior, and four weeks following influenza vaccination. IgG responses to vaccination were measured via antigen microarray and seroprotection via hemagglutination inhibition assays at 4 and 16weeks post-vaccination. High pre-vaccination seroprotection levels were observed for H3N2 and B viral strains. Positive mood on the day of vaccination was a significant predictor of H1N1 seroprotection at 16weeks post-vaccination and IgG responses to vaccination at 4 and 16weeks post-vaccination, controlling for age and gender. Positive mood across the 6-week observation period was also significantly associated with post-vaccination H1N1 seroprotection and IgG responses to vaccination at 16weeks post-vaccination, but in regression models the proportion of variance explained was lower than for positive mood on the day of vaccination alone. No other factors were found to significantly predict antibody responses to vaccination. Greater positive mood in older adults, particularly on the day of vaccination, is associated with enhanced responses to vaccination.

Qualitative Investigation of the Wellness Recovery Action Plan in a UK NHS Crisis Care Setting.

Crisis theory suggests that in addition to presenting a threat to mental well-being, crises are also opportunities where successful interventions can lead to successful outcomes. UK mental health crisis teams aim to reduce hospital admission by treating people at home and by building resilience and supporting learning from crisis, yet data on repeat crisis episodes suggest this could be improved. This qualitative study sought to explore the Wellness Recovery Action Plan (WRAP) as a means of supporting resilience-building and maximising the opportunity potential of crisis. The following themes emerged: The meaning of crisis; Engaging with the WRAP process; WRAP and self-management; and Changes and transformations. This research suggests that WRAP has potential in supporting recovery from crisis, revealing insights into the nature of crisis which can inform the further development of crisis services.

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.

Identifying malnutrition in emergency general surgery: systematic review.

BACKGROUND: Emergency general surgery practice is high risk. Surgery is a key part of treatment, with resultant catabolic stress and frequent need for nutritional support. The aim of this study was to examine the current methods of defining and determining malnutrition in emergency general surgery. This included examining the use of nutrition screening and assessment tools and other measures of malnutrition. METHODS: MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature, trial registries, and relevant journals published between January 2000 and January 2022 were searched for studies of adult patients with any emergency general surgery diagnosis, managed conservatively or operatively, with an assessment of nutritional status. Mixed populations were included if more than 50 per cent of patients were emergency general surgery patients or emergency general surgery results could be separately extracted. Studies in which patients had received nutritional support were excluded. The protocol was registered with PROSPERO, the international prospective register of systematic reviews (CRD42021285897). RESULTS: From 6700 studies screened, 324 full texts were retrieved and 31 were included in the analysis. A definition of malnutrition was provided in 23 studies (75 per cent), with nutritional status being determined by a variety of methods. A total of seven nutrition screening tools and a total of nine 'assessment' tools were reported. To define malnutrition, the most commonly used primary or secondary marker of nutritional status was BMI, followed by albumin level. CONCLUSION: Wide variation exists in approaches to identify malnutrition risk in emergency general surgery patients, using a range of tools and nutrition markers. Future studies should seek to standardize nutrition screening and assessment in the emergency general surgery setting as two discrete processes. This will permit better understanding of malnutrition risk in surgical patients.

Patient, carer and healthcare professional perspectives on increasing calorie intake in Amyotrophic Lateral Sclerosis.

OBJECTIVES: Research suggests that higher Body Mass Index is associated with improved survival in people with Amyotrophic Lateral Sclerosis (pwALS). Yet, understanding of the barriers and enablers to increasing calorie intake is limited. This study sought to explore these issues from the perspective of pwALS, informal carers, and healthcare professionals. METHODS: Interviews with 18 pwALS and 16 informal carers, and focus groups with 51 healthcare professionals. Data were analysed using template analysis and mapped to the COM-B model and Theoretical Domains Framework (TDF). RESULTS: All three COM-B components (Capability, Opportunity and Motivation) are important to achieving high calorie diets in pwALS. Eleven TDF domains were identified: Physical skills (ALS symptoms); Knowledge (about high calorie diets and healthy eating); Memory, attention, and decision processes (reflecting cognitive difficulties); Environmental context/resources (availability of informal and formal carers); Social influences (social aspects of eating); Beliefs about consequences (healthy eating vs. high calorie diets); Identity (interest in health lifestyles); Goals (sense of control); Reinforcement (eating habits); and Optimism and Emotion (low mood, poor appetite). DISCUSSION: To promote high calorie diets for pwALS, greater clarity around the rationale and content of recommended diets is needed. Interventions should be tailored to patient symptoms, preferences, motivations, and opportunities.

Understanding the current nutritional management for people with amyotrophic lateral sclerosis - A mapping review.

BACKGROUND & AIMS: Poor nutritional outcomes are observed in people with Amyotrophic Lateral Sclerosis (pwALS) including weight loss and poor dietary intake. Surveys of healthcare professionals have highlighted the lack of evidence and knowledge regarding nutritional management of ALS throughout the disease course. Furthermore, national evidence-based guidance is lacking. This mapping review aims to understand the structure and input of nutritional management services for pwALS. METHODS: Systematic searches were conducted across eight electronic databases to identify qualitative and quantitative research on structure and input of nutritional care in ALS. Supplementary searches included grey literature, citation and reference list searching of included studies and key reviews, web searching and contacting experts and organisations that provide ALS services to identify guidelines. Study selection and data extraction were undertaken independently by at least two reviewers. Data was synthesised using a narrative approach. RESULTS: One hundred and nine documents were identified. These consisted of journal articles, guidelines and related documents that contributed evidence towards mapping of nutritional management of pwALS. No evidence on commissioning of nutritional care was identified. Guidelines provided high-level overviews and gave general guidance or recommendations for care; however, these typically focused on gastrostomy with limited guidance on broader aspects, including oral nutrition support. Evidence from primary studies found nutritional care delivery in ALS consisted of multiple types of nutritional management, at different time points during the disease course and involving a range of professionals. There was little evidence relating to proactive nutritional care. Details of healthcare setting, number of professionals involved in care, team composition and how services were delivered in community settings were sparse. Although the role of the speech and language therapist in swallowing assessment and provision of advice on the management of swallowing difficulties was consistent; there was limited evidence on care provided by dietitians. In addition, a small number of studies reported on the use of screening tools. Overall, evidence was consistent that weight management, including monitoring of weight change by professionals and patients, was central and recommended that this should be part of nutritional assessment and follow-up. CONCLUSIONS: The evidence identified in this mapping review has highlighted the requirement for further primary research providing specific details on how nutritional management of pwALS is structured and delivered.

Effects of non-pharmacological interventions as vaccine adjuvants in humans: a systematic review and network meta-analysis.

INTRODUCTION: Psychological and behavioural may enhance vaccine effectiveness. We conducted a systematic review and network meta-analysis (NMA) to examine the effects of non-pharmacological adjuvants on vaccine effectiveness, as measured by antibody responses to vaccination. AREAS COVERED: Electronic databases (EMBASE, Medline, PsychINFO, CINAHL) were searched from inception to 6th February 2018. This yielded 100 eligible papers, reporting 106 trials: 79 interventions associated with diet and/or nutrition; 12 physical activity interventions and 9 psychological interventions.Over half (58/106) of trials reported evidence of an enhanced antibody response to vaccination across one or more outcomes. The NMA considered the comparative effects between all intervention types, control and placebo for antibody titres (48 studies), seroconversion (25 studies) and seroprotection (23 studies) separately. The NMA provided weak evidence in support of nutritional formulae and probiotics in increasing antibody titres. EXPERT OPINION: This review offers a comprehensive summary of the literature on non-pharmacological interventions as vaccine adjuvants. The evidence is characterised by considerable heterogeneity but provides early evidence in support of nutritional formulae and probiotic interventions. Psychological and exercise-based interventions were characterised by limited and unreliable evidence. Large, well-designed studies including consistent core outcomes and measures of intervention adherence and fidelity are required.

Delivery of nutritional management services to people with amyotrophic lateral sclerosis (ALS).

OBJECTIVES: The aim of this study was to investigate how nutritional management services for people with Amyotrophic Lateral Sclerosis (pwALS) are structured in the UK, in order to gain insight into current practice and identify key barriers and enablers to delivering and providing services. Methods: A three-part, sequential mixed-methods study was conducted that comprised (i) a thematic analysis of data from five focus groups (with 47 ALS health professionals from 41 UK organizations and four service user representatives), (ii) a nationwide cross-sectional survey (281 ALS healthcare professionals) and (iii) a freedom of information request (251 organizations). Results: UK nutritional management services for pwALS are coordinated from specialist (n = 22) and non-specialist care centers (n = 89), with national variability in the organization and delivery of services. Multidisciplinary working was highlighted to facilitate the coordination of nutritional care. However, the need to provide evidence-based continuing education for HCPs was evident. Overall, the lack of clear guidelines on the nutritional management of people with ALS was identified as a key barrier to the delivery of effective nutritional care, as was the lack of transparency and consistency in the commissioning of nutritional services. Further concerns over the timeliness of the dietetic intervention and equity of access and provision were raised. Conclusions: Our findings suggest that development of guidelines for nutritional management, particularly at diagnosis and pre-gastrostomy, could drive standardization of high quality nutritional care for pwALS. Such guidance has the potential to reduce inequalities in geographical provision by providing clarity for those commissioning specialist nutrition services.

Impact of hospitalisation of children on parental dietary habits: a qualitative study.

OBJECTIVE: To explore how prolonged hospitalisation of a child with a neurological condition influences the dietary habits of parents, taking account of their attitudes and perceptions of this experience. DESIGN: Qualitative study using semi-structured interviews and inductive thematic analysis. SUBJECTS: Fifteen parents of children (aged 2-16 years) with a neurological condition resulting in prolonged periods of hospitalisation were recruited. RESULTS: Mothers (n=13) and fathers (n=2) who were interviewed experienced frequent hospital visits brought about by their child's condition, or associated medical complications. Dietary habits of parents were affected throughout their time in hospital. Three key themes were identified relating to how hospitalisation influenced this: (1) access to food, (2) emotional and physical well-being and (3) impact on eating patterns and food choice. CONCLUSIONS: Findings from this study suggest that parents in these circumstances need to be better supported within the hospital setting as a number of barriers exist when it comes to accessing food in hospital and making healthy food choices. Additionally, having a child in hospital has a considerable effect on a parent's emotional well-being, which further impacts on their dietary habits. The long-term physical and mental health implications of this may influence their ability to care for the sick child.

Health care professionals' views on psychological factors affecting nutritional behaviour in people with motor neuron disease: A thematic analysis.

Motor neuron disease (MND), also known as amyotrophic lateral sclerosis, is a neurodegenerative disorder that causes progressive muscle paralysis and typically leads to death within 3 years. As no cure is currently available, symptomatic management is the mainstay of treatment. An important part of this is optimizing nutritional intake with evidence that this may positively affect survival and quality of life. Health care professionals (HCPs) play a pivotal role in nutritional management of people with MND (pwMND) but, to date, their views on the psychological barriers faced by pwMND have not been explored. Such an exploration may identify ways in which the delivery of nutritional care for pwMND can be optimized. METHODS: Five qualitative focus groups were carried out across the United Kingdom in June 2018 with 51 participants, including 47 HCPs involved with MND care and four service user representatives. Data were analysed through thematic analysis. RESULTS: Four overarching themes were identified: psychological adjustment and patient engagement; nutrition and the need for control; knowledge of nutrition and the complexity of MND; and the psychosocial nature of eating. CONCLUSIONS: The findings suggest that the nutritional management of pwMND should be mindful of factors such as the impact of distress at the time of diagnosis, the availability of clear information on nutrition and MND, as well as the importance of illness perceptions and coping strategies. Moreover, tailored psychological interventions should be considered to mitigate the impact on MND on the experience of eating. Statement of contribution What is already known on this subject? Since weight loss and reduced body mass index (BMI) have been identified as independent risk factors for prognosis and survival in motor neuron disease (MND), nutritional management represents an important component of the symptomatic care of people with MND (pwMND) aimed at prolonging survival and maintaining or improving quality of life. However, the current guidelines and quantitative and qualitative literature on the topic are mainly focused on issues around enteral feeding and gastrostomy insertion, and very little is currently known about potential psychological enablers or barriers to earlier nutritional management, especially from the perspectives of health care professionals (HCPs) involved in the delivery of nutritional care in pwMND. What does this study add? First qualitative investigation of enablers or barriers to nutritional care in pwMND from the perspective of HCPs. New insight into psychological factors (e.g., adjustment, avoidance, loss of control) in nutritional care for pwMND. Practical implications and novel clinical suggestions for HCPs involved in nutritional care of pwMND.

Psychological interventions as vaccine adjuvants: A systematic review.

OBJECTIVES: The effectiveness of vaccines is known to be altered by a range of psychological factors. We conducted a systematic review to evaluate the effects of psychological interventions on the ability of vaccines to protect against disease, as measured by antibody responses. METHODS: Electronic databases (EMBASE, Medline, PsychINFO, CINAHL) were searched from their inception to 6th February 2018. RESULTS: The search yielded 9 eligible trials conducted with 1603 participants and four broad categories of intervention: meditation/mindfulness (n = 3), massage (n = 3), expressive writing (n = 2) and cognitive behavioural stress management (n = 1). Some evidence of benefit on the antibody response to vaccination was observed in 6/9 of all trials and in 4/7 of randomised controlled trials. However, effects on antibody levels were often mixed, with only 3 of 6 trials showing benefit demonstrating an improvement in all antibody outcomes and at all time points assessed. Trials demonstrating benefit also provided direct or indirect evidence of adequate adherence with the intervention; and in 50% of these trials, there was also evidence that the intervention was effective in changing the mediating psychological constructs targeted by the intervention. CONCLUSIONS: This literature is characterised by considerable heterogeneity in terms of intervention type, vaccine type, age of participants and the temporal relationship between vaccination and intervention. We conclude that there is early evidence to suggest that psychological interventions may enhance the antibody response to vaccination. However, the effects are inconsistent, with the greatest likelihood of benefit seen in trials evidencing adequate adherence with the intervention. Future work would benefit from rigorous intervention development that focuses on achieving adequate adherence and large well-controlled randomised trials with a focus on an agreed set of outcomes.

Pancreatic enzyme replacement therapy following surgery for pancreatic cancer: An exploration of patient self-management.

BACKGROUND: For those diagnosed with pancreatic cancer, ill-addressed pancreatic exocrine insufficiency (PEI) following surgery can result in malnutrition related complications that may impact on predict mortality and morbidity. The use of pancreatic enzyme replacement therapy (PERT) is recommended and often demands a degree of patient self-management. Understanding more about how this treatment is managed is fundamental to optimising care. OBJECTIVE: This study aimed to explore patient self-management of PERT following surgery for pancreatic cancer. METHODS: Semi-structured interviews were conducted with nine participants. Eligible participants included adult patients who had undergone surgery for a malignancy in the pancreatic region and were prescribed PERT post-operatively. Inductive thematic analysis was used to analyse our findings. RESULTS: Data analysis revealed three overarching themes; the role of professional support, factors influencing decisions to use PERT in symptom management and the challenges of socializing. The difficulties negotiated by participants were considerable as they struggled with the complexities of PERT. Symptom management and subsequently reported physical repercussions and undesirable social implications were problematic. Professional support was largely inconsistent and relinquished prematurely following discharge. Consequently, this impacted on how PERT was self-managed. CONCLUSION: Enabling patients to appropriately self-manage PERT may lessen the post-treatment burden. Our findings suggest that support should continue throughout the recovery phase and should address the patient's 'self-management journey'. Intervention by healthcare professionals, such as a specialist dietitian is likely to be beneficial. Furthermore there are focal issues, primarily explicit education and appropriately timed information that require consideration by those developing and delivering services.

Cross-cultural psychometric assessment of an appetite questionnaire for patients with cancer.

OBJECTIVE: To evaluate the psychometric properties, along with cross-cultural invariance analysis, of the Cancer Appetite and Symptom Questionnaire (CASQ). METHOD: Data from 555 United Kingdom (UK) cancer patients were used to evaluate the psychometric properties of the CASQ. Construct validity was assessed through factorial and convergent validity. We conducted a confirmatory factor analysis using as indices the chi-square ratio by degrees of freedom (χ2/df), the comparative fit index (CFI), the goodness of fit index (GFI), and the root mean square error of approximation (RMSEA). Convergent validity was estimated by the items' average variance extracted (AVE). Reliability was estimated by composite reliability and internal consistency. Factorial invariance analysis of the CASQ was evaluated by multigroup analysis (∆χ2) using the UK and Brazilian samples. RESULTS: All items showed adequate psychometric sensitivity in the UK sample. One item was removed and four correlations were included between errors with an appropriate fit of the model (χ2/df = 2.674, CFI = 0.966, GFI = 0.964, RMSEA = 0.055). The reliability of the CASQ was adequate and the convergent validity was low. The factorial structure of the CASQ differed across countries, and a lack of measurement invariance for the two countries was observed (λ: ∆χ2 = 64.008, p < 0.001; i: ∆χ2 = 3515.047, p < 0.001; Res: ∆χ2 = 4452.504, p < 0.001). CONCLUSION: The CASQ showed adequate psychometric properties in the UK sample. The ability to estimate loss of appetite and the presence of symptoms was different between UK and Brazilian patients.

Patient and Family Caregivers' Experiences of Living With a Jejunostomy Feeding Tube After Surgery for Esophagogastric Cancer.

BACKGROUND: Jejunostomy feeding tubes (JFTs) can be used to provide nutrition support to patients who have had surgery for esophagogastric cancer. Although previous research reports how patients cope with a gastrostomy tube, little is known about the impact of having a JFT. The aim of this qualitative study was to explore how patients and their informal caregivers experience living with a JFT in the first months following surgery. METHODS: Participants were purposively sampled from a cohort of patients recruited to a trial investigating home enteral nutrition vs standard care after esophagogastric surgery for cancer. The sampling framework considered age, sex, and marital status. Informal caregivers were also invited to participate. Interviews were audio recorded, transcribed verbatim, and anonymized. Inductive thematic analysis was used to identify key themes related to living with a JFT. RESULTS: Fifteen patient interviews were conducted; 8 also included a family caregiver. Analysis of the data resulted in 2 main themes: "challenges" and "facilitators" when living with a JFT. While "physical effects," "worries" and "impact on routine" were the main challenges, "support," "adaptation" and "perceived benefit" were what motivated continuation of the intervention. CONCLUSION: Findings suggest that participants coped well with a JFT, describing high levels of compliance with stoma care and the feeding regimen. Nonetheless, disturbed sleep patterns and stoma-related problems proved troublesome. A better understanding of these practical challenges, from the patient and family caregiver perspective, should guide healthcare teams in providing proactive support to avoid preventable problems.

A systematic review of the nutritional consequences of esophagectomy.

BACKGROUND & AIMS: As improved outcomes after esophagectomy have been observed over the last two decades, the focus on care has shifted to survivorship and quality of life. The aim of this review was to determine changes in nutrition after esophagectomy and to assess the evidence for extended nutrition support. METHODS: A search strategy was developed to identify primary research reporting change in nutritional status a minimum of one month after esophagectomy. RESULTS: Changes in nutritional parameters reported by 18 studies indicated a weight loss of 5-12% at six months postoperatively. More than half of patients lost >10% of body weight at 12 months. One study reported a persistent weight loss of 14% from baseline three years after surgery. Three studies reporting on longer term follow up noted that 27%-95% of patients failed to regain their baseline weight. Changes in dietary intake (three studies) indicated inadequate energy and protein intake up to three years after surgery. Global quality of life scores reported in one study correlated with better weight preservation. There were a high frequency of gastrointestinal symptoms reported in six studies, most notably in the first year after surgery, but persisting up to 19 years. Extended enteral nutrition on a selective basis has been reported in several studies. CONCLUSIONS: Nutritional status is compromised in the months/years following oesophagectomy and may never return to baseline levels. The causes/consequences of weight loss/impaired nutritional intake require further investigation. The role of extended nutritional support in this population remains unclear.

Cancer Appetite and Symptom Questionnaire (CASQ) for Brazilian Patients: Cross-Cultural Adaptation and Validation Study.

BACKGROUND: Appetite and symptoms, conditions generally reported by the patients with cancer, are somewhat challenging for professionals to measure directly in clinical routine (latent conditions). Therefore, specific instruments are required for this purpose. This study aimed to perform a cultural adaptation of the Cancer Appetite and Symptom Questionnaire (CASQ), into Portuguese and evaluate its psychometric properties on a sample of Brazilian cancer patients. METHODS: This is a validation study with Brazilian cancer patients. The face, content, and construct (factorial and convergent) validities of the Cancer Appetite and Symptom Questionnaire, the study tool, were estimated. Further, a confirmatory factor analysis (CFA) was conducted. The ratio of chi-square and degrees of freedom (χ2/df), comparative fit index (CFI), goodness of fit index (GFI) and root mean square error of approximation (RMSEA) were used for fit model assessment. In addition, the reliability of the instrument was estimated using the composite reliability (CR) and Cronbach's alpha coefficient (α), and the invariance of the model in independent samples was estimated by a multigroup analysis (Δχ2). RESULTS: Participants included 1,140 cancer patients with a mean age of 53.95 (SD = 13.25) years; 61.3% were women. After the CFA of the original CASQ structure, 2 items with inadequate factor weights were removed. Four correlations between errors were included to provide adequate fit to the sample (χ2/df = 8.532, CFI = .94, GFI = .95, and RMSEA = .08). The model exhibited a low convergent validity (AVE = .32). The reliability was adequate (CR = .82 α = .82). The refined model showed strong invariance in two independent samples (Δχ2: λ: p = .855; i: p = .824; Res: p = .390). A weak stability was obtained between patients undergoing chemotherapy and radiotherapy (Δχ2: λ: p = .155; i: p < .001; Res: p < .001), and between patients undergoing chemotherapy combined with radiotherapy and palliative care (Δχ2: λ: p = .058; i: p < .001; Res: p < .001). CONCLUSION: The Portuguese version of the CASQ had good face and construct validity and reliability. However, the CASQ still presented invariance in independent samples of Brazilian patients with cancer. However, the tool has low convergent validity and weak invariance in samples with different treatments.