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INTRODUCTION: Maintaining adequate nutritional status can be a challenge for patients with small bowel neuroendocrine tumours (NETs). Surgical resection could result in short bowel syndrome (SBS), whilst without surgical resection there is a considerable risk of ischemia or developing an inoperable malignant bowel obstruction (IMBO). SBS or IMBO are forms of intestinal failure (IF) which might require treatment with home parenteral nutrition (HPN). Limited data exist regarding the use of HPN in patients with small bowel neuroendocrine tumours, and it is not frequently considered as a possible treatment. METHODS: A systematic review was performed regarding patients with small bowel NETs and IF to report on overall survival and HPN-related complications and create awareness for this treatment. RESULTS: Five articles regarding patients with small bowel NETs or a subgroup of patients with NETs could be identified, mainly case series with major concerns regarding bias. The studies included 60 patients (range 1-41). The overall survival time varied between 0.5 and 154 months on HPN. However, 58% of patients were alive 1 year after commencing HPN. The reported catheter-related bloodstream infection rate was 0.64-2 per 1000 catheter days. CONCLUSION: This systematic review demonstrates the feasibility of the use of HPN in patients with NETs and IF in expert centres with a reasonable 1-year survival rate and low complication rate. Further research is necessary to compare patients with NETs and IF with and without HPN and the effect of HPN on their quality of life.
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Insuficiência Intestinal , Tumores Neuroendócrinos , Nutrição Parenteral no Domicílio , Humanos , Estudos de Viabilidade , Qualidade de Vida , Tumores Neuroendócrinos/complicações , Tumores Neuroendócrinos/terapia , Nutrição Parenteral no Domicílio/efeitos adversosRESUMO
Home parenteral support (HPS) is an essential but potentially burdensome treatment that can affect quality of life (QoL). The aims of this longitudinal study were to understand whether any changes in HPS over time were associated with QoL. The Parenteral Nutrition Impact Questionnaire (PNIQ) was used, and data were collected on HPS prescribed at three time points. Data were analysed using multi-level mixed regression models presented as effect size and were adjusted for confounders. Study recruited 572 participants from 15 sites. Of these, 201 and 145 completed surveys at second and third time-points, respectively. PNIQ score was out of 20 with a higher score indicating poorer QoL. Any reduction in HPS infusions per week was associated with an improved PNIQ score of -1.10 (95% CI -2.17, -0.02) unadjusted and -1.34 (95% CI -2.45, -0.24) adjusted. Per day change to the number of infusions per week was associated with a change in the PNIQ score of 0.32 (95% CI -0.15, 0.80) unadjusted and 0.34 (95% CI -0.17, 0.85) adjusted. This is the largest national study to demonstrate improvements in QoL associated with HPS reduction over time using an HPS-specific and patient-centric tool, adding unique data for use of therapies in intestinal failure.
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Enteropatias , Insuficiência Intestinal , Nutrição Parenteral no Domicílio , Humanos , Qualidade de Vida , Estudos Longitudinais , Enteropatias/terapia , Doença CrônicaRESUMO
AIMS: To determine the prevalence of vitamin D deficiency in adults with Crohn's Disease (CD) in Birmingham, UK (latitude 52.4°N, -1.9°E) and identify modifiable risk factors. DESIGN/METHOD: A nurse-led, single-centre, prospective study was conducted over 5 months in 2019 and 2020 in outpatients with CD, at a tertiary referral hospital in Birmingham UK. Vitamin D (25OHD) levels were measured at a single timepoint by a dried blood spot sample. Modifiable risk factor data were collected including intake of vitamin D-containing foods, use of vitamin D supplements, sun exposure and current smoking. RESULTS: Total 150 participants (53.3% male, 79.3% white British). Vitamin D deficiency (25OHD <50 nmol/L) was found in 53.3%. 32.7% of participants took over-the-counter vitamin D supplements and 20.7% used prescribed supplements. We found that diets were generally poor in relation to vitamin D-rich foods. In terms of sun exposure, few (18%) had visited a sunny country recently, and few (6%) covered their whole body with clothing. Most used High Sun Protection Factor (80%) with a median grade of SPF 45. CONCLUSION: Patients with CD are at high risk of vitamin D deficiency as defined by 25OHD < 50 nmol/L, with the prevalence of deficiency being highest during the winter months. Patients with CD in the UK are unlikely to maintain vitamin D levels from sunlight exposure, dietary sources or over-the-counter supplements. IMPACT: Patients with Crohn's Disease are at high risk of developing vitamin D deficiency but there is little data from the UK at this latitude. We demonstrate the prevalence and severity of vitamin D deficiency in people with Crohn's Disease in the UK. The prevalence of vitamin D deficiency in this group is high and warrants monitoring by nurses and clinical teams. Nurses and clinical teams should consider strategies for vitamin D supplementation in patients with Crohn's Disease.
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Doença de Crohn , Deficiência de Vitamina D , Adulto , Humanos , Masculino , Feminino , Estudos Prospectivos , Doença de Crohn/epidemiologia , Prevalência , Deficiência de Vitamina D/epidemiologia , Vitamina D/uso terapêutico , Vitaminas , Suplementos Nutricionais , Fatores de RiscoRESUMO
Patients on home parenteral nutrition (HPN) have had to endure sweeping changes to their personal lives and medical care during the COVID-19 pandemic. We evaluated the patients' perspectives of these changes at our Intestinal Failure/Rehabilitation centre in order to initiate a debate on improving HPN care. The findings point to high levels of anxiety and depression amongst the 35 patients surveyed with many reporting frustration at conflicting information from different sources. Telephone consultations were well received and most were keen for these to continue. In light of these results, we outline recommendations to enhance our patients' experiences in the coming phases of the pandemic.
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COVID-19 , Nutrição Parenteral no Domicílio , Ansiedade , Humanos , Pandemias , Inquéritos e QuestionáriosRESUMO
Background: The European Society for Clinical Nutrition and Metabolism database for chronic intestinal failure (CIF) was analyzed to investigate factors associated with nutritional status and the intravenous supplementation (IVS) dependency in children. Methods: Data collected: demographics, CIF mechanism, home parenteral nutrition program, z-scores of weight-for-age (WFA), length or height-for-age (LFA/HFA), and body mass index-for-age (BMI-FA). IVS dependency was calculated as the ratio of daily total IVS energy over estimated resting energy expenditure (%IVSE/REE). Results: Five hundred and fifty-eight patients were included, 57.2% of whom were male. CIF mechanisms at age 1−4 and 14−18 years, respectively: SBS 63.3%, 37.9%; dysmotility or mucosal disease: 36.7%, 62.1%. One-third had WFA and/or LFA/HFA z-scores < −2. One-third had %IVSE/REE > 125%. Multivariate analysis showed that mechanism of CIF was associated with WFA and/or LFA/HFA z-scores (negatively with mucosal disease) and %IVSE/REE (higher for dysmotility and lower in SBS with colon in continuity), while z-scores were negatively associated with %IVSE/REE. Conclusions: The main mechanism of CIF at young age was short bowel syndrome (SBS), whereas most patients facing adulthood had intestinal dysmotility or mucosal disease. One-third were underweight or stunted and had high IVS dependency. Considering that IVS dependency was associated with both CIF mechanisms and nutritional status, IVS dependency is suggested as a potential marker for CIF severity in children.
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Enteropatias , Insuficiência Intestinal , Nutrição Parenteral no Domicílio , Síndrome do Intestino Curto , Adulto , Criança , Doença Crônica , Estudos Transversais , Feminino , Humanos , Enteropatias/epidemiologia , Enteropatias/terapia , Masculino , Síndrome do Intestino Curto/terapiaRESUMO
Vitamin D has well-documented effects on calcium homeostasis and bone metabolism but recent studies suggest a much broader role for this secosteroid in human health. Key components of the vitamin D system, notably the vitamin D receptor (VDR) and the vitamin D-activating enzyme (1α-hydroxylase), are present in a wide array of tissues, notably macrophages, dendritic cells and T lymphocytes (T cells) from the immune system. Thus, serum 25-hydroxyvitamin D (25D) can be converted to hormonal 1,25-dihydroxyvitamin D (1,25D) within immune cells, and then interact with VDR and promote transcriptional and epigenomic responses in the same or neighbouring cells. These intracrine and paracrine effects of 1,25D have been shown to drive antibacterial or antiviral innate responses, as well as to attenuate inflammatory T cell adaptive immunity. Beyond these mechanistic observations, association studies have reported the correlation between low serum 25D levels and the risk and severity of human immune disorders including autoimmune diseases such as inflammatory bowel disease, multiple sclerosis, type 1 diabetes and rheumatoid arthritis. The proposed explanation for this is that decreased availability of 25D compromises immune cell synthesis of 1,25D leading to impaired innate immunity and over-exuberant inflammatory adaptive immunity. The aim of the current review is to explore the mechanistic basis for immunomodulatory effects of 25D and 1,25D in greater detail with specific emphasis on how vitamin D-deficiency (low serum levels of 25D) may lead to dysregulation of macrophage, dendritic cell and T cell function and increase the risk of inflammatory autoimmune disease.
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BACKGROUND & AIMS: Home parenteral nutrition (HPN) is a necessary treatment for patients with chronic, type 3, intestinal failure (IF). HPN often requires lifestyle adaptations, which are likely to affect quality of life (QoL) in both patients and family members. The aim of this study was to identify the level of burden on family members who are involved with HPN care and to understand specific factors that contribute to any burden. METHODS: Patients over the age of 18 and receiving HPN were identified in IF clinics from multiple centres across the U.K. Eligible patients were asked to complete the parenteral nutrition impact questionnaire (PNIQ) to assess their QoL, while family members were asked to complete the burden scale for family caregivers (BSFC). Logistical regression was undertaken giving adjusted odds ratios (aOR). RESULTS: 678 participants completed the survey representing 339 patients with their appointed family member. Mean PNIQ score was 11.53 (S.D. 5.5), representing a moderate impact of HPN on patients' QoL. On the BSFC scale, 23% of family members reported a moderate to very severe subjective burden indicating an increased risk of psychosomatic symptoms. After adjusting for age and gender, predictors of BSFC included: family members self-reported health status using the EuroQol visual analogue scale (aOR 19.91, 95% CI 1.69, 233.99, p = 0.017) and support received by health services (aOR = 5.83, 95% CI = 1.93, 17.56, p = 0.002). Employment status, disease type, number of nights on HPN and length of time on HPN were not associated with BSFC. CONCLUSIONS: Family members with a poor health status or lack of support by health service were more likely to have a moderate to very severe subjective burden. Tailored support from the multi-professional IF team may reduce the burden experienced by family members of people dependent on HPN.
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Sobrecarga do Cuidador/psicologia , Cuidadores/psicologia , Família/psicologia , Insuficiência Intestinal/terapia , Nutrição Parenteral no Domicílio/psicologia , Doença Crônica , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Humanos , Insuficiência Intestinal/psicologia , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Reino UnidoRESUMO
BACKGROUND AND AIMS: The case-mix of patients with intestinal failure due to short bowel syndrome (SBS-IF) can differ among centres and may also be affected by the timeframe of data collection. Therefore, the ESPEN international multicenter cross-sectional survey was analyzed to compare the characteristics of SBS-IF cohorts collected within the same timeframe in different countries. METHODS: The study included 1880 adult SBS-IF patients collected in 2015 by 65 centres from 22 countries. The demographic, nutritional, SBS type (end jejunostomy, SBS-J; jejuno-colic anastomosis, SBS-JC; jejunoileal anastomosis with an intact colon and ileocecal valve, SBS-JIC), underlying disease and intravenous supplementation (IVS) characteristics were analyzed. IVS was classified as fluid and electrolyte alone (FE) or parenteral nutrition admixture (PN). The mean daily IVS volume, calculated on a weekly basis, was categorized as <1, 1-2, 2-3 and >3 L/day. RESULTS: In the entire group: 60.7% were females and SBS-J comprised 60% of cases, while mesenteric ischaemia (MI) and Crohn' disease (CD) were the main underlying diseases. IVS dependency was longer than 3 years in around 50% of cases; IVS was infused ≥5 days/week in 75% and FE in 10% of cases. Within the SBS-IF cohort: CD was twice and thrice more frequent in SBS-J than SBS-JC and SBS-JIC, respectively, while MI was more frequent in SBS-JC and SBS-JIC. Within countries: SBS-J represented 75% or more of patients in UK and Denmark and 50-60% in the other countries, except Poland where SBS-JC prevailed. CD was the main underlying disease in UK, USA, Denmark and The Netherlands, while MI prevailed in France, Italy and Poland. CONCLUSIONS: SBS-IF type is primarily determined by the underlying disease, with significant variation between countries. These novel data will be useful for planning and managing both clinical activity and research studies on SBS.
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Enteropatias , Síndrome do Intestino Curto , Adulto , Estudos Transversais , Feminino , Humanos , Enteropatias/epidemiologia , Enteropatias/terapia , Intestinos , Nutrição Parenteral , Síndrome do Intestino Curto/epidemiologia , Síndrome do Intestino Curto/terapiaRESUMO
OBJECTIVE: Vitamin A (VA) deficiency, more common in low- and middle-income countries (LMIC) secondary to malnutrition, is associated with increased morbidity and mortality. The prevalence and impact of VA deficiency in high-income countries (HIC) where chronic conditions may predispose is less well understood. DESIGN: Interpretation of serum retinol may be affected by inflammation, so C-reactive protein (CRP) levels were sought. Binary logistic regression and generalised estimating equations were performed to review the relationship between CRP and VA. SETTING: We examined the scale of low and deficient VA status in our tertiary University Teaching Hospital (HIC). PARTICIPANTS: Patients undergoing serum retinol concentrations 2012-2016 were identified from laboratory records, and records examined. RESULTS: Totally, 628 assays were requested, with eighty-two patients VA low (0·7-0·99 Umol/l) or deficient (<0·7 Umol/l). Sixteen patients were symptomatic (fifteen deficient), predominantly visual. Only one symptomatic patient's VA deficiency was secondary to poor intake. Other symptomatic patients had chronic illnesses resulting in malabsorption. The incidence of a low VA level increases significantly with a raised CRP. CONCLUSION: The majority of patients tested either were replete or likely to have abnormal VA levels due to concomitant inflammation. A minority of patients had signs and symptoms of VA deficiency and was a cause of significant morbidity, but aetiology differs from LMIC, overwhelmingly malabsorption, most commonly secondary to surgery or hepatobiliary disease. A correlation between inflammation and low VA levels exists, which raises the possibility that requesting a VA level in an asymptomatic patient with active inflammation may be of questionable benefit.
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Deficiência de Vitamina A , Hospitais , Humanos , Encaminhamento e Consulta , Reino Unido/epidemiologia , Vitamina A , Deficiência de Vitamina A/epidemiologiaRESUMO
Introduction: A 65-year-old woman with type 3 intestinal failure secondary to scleroderma of the gut (limited cutaneous sclerosis (centromere positive) and rheumatoid arthritis (anti-cyclic citrullinated peptide (CCP) and rheumatoid factor positive)) on home parenteral nutrition since 2011 underwent a venting PEG replacement in 2015 for intractable vomiting due to gut dysmotility and small bowel bacterial overgrowth, poorly responding to cyclical antibiotics. An endoscopy was undertaken for planned PEG review for consideration of elective replacement (figure 1).Figure 1Initial endoscopy.Based on this endoscopy, her case was discussed at a multidisciplinary team meeting and the anaesthetic risk of laparotomy to remove the PEG was deemed too high (previous endoscopic PEG exchange under sedation had been poorly tolerated due to tube removal through the oesophagus (possibly affected by scleroderma), and necessitated anaesthesia). Therefore, it was decided to insert a new venting PEG endoscopically alongside the previous buried PEG (cut short and clamped) with the plan to remove the old one at a later date. QUESTIONS: What is shown during the initial endoscopy?What is shown during follow-up endoscopy?
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BACKGROUND: Crohn's disease (CD) is a principal form of inflammatory bowel disease, affecting approximately 1 in every 650 people in the UK. Vitamin D deficiency is common in approximately 57.7% of CD patients; with anaemia occurring in about 43% of patients. There is growing evidence that supplementing CD patients who are vitamin D deficient may be effective in reducing the severity of CD symptoms and reducing iron-deficiency anaemia. Nevertheless, National Institute for Health and Care Excellence guidance regarding the management of CD does not address vitamin D deficiency in these patients. The aims of the study are (1) to determine the prevalence of vitamin D deficiency in adults with CD in Birmingham, UK and (2) to assess the feasibility of conducting a multi-site randomised controlled trial in adult patients with CD and vitamin D deficiency. METHODS: D-CODE consists of two parts-a screening study and an open-label randomised controlled feasibility study. 1. Vitamin D screening Three hundred patients, 18 years or older with CD will have a dried blood spot test to measure vitamin D levels. Dietary and sun exposure data will be collected. Eligible patients with low levels of vitamin D will be invited to participate in the feasibility study. 2. Feasibility study Fifty participants with CD and vitamin D deficiency will be randomised to receive either a low (400 IU daily for 24 weeks) or high (3200 IU daily for 12 weeks then vitamin D3 800 IU daily for 12 weeks) dose of vitamin D3 oral supplementation. Patient-reported outcomes (Inflammatory Bowel Disease Questionnaire, EQ-5D-5L and Crohn's Disease Activity Index Score) will be collected at weeks 0 and 24. Biochemical monitoring will take place at weeks 0, 12 and 24 and will measure 25-hydroxyvitamin D, corrected calcium, albumin, parathyroid hormone, hepcidin, other vitamin D metabolites, iron studies and C-reactive protein. Faecal calprotectin will be measured at weeks 0 and 24. DISCUSSION: A key aspect of D-CODE is the identification of vitamin D deficiency prior to supplementation. It is hoped that this feasibility study will lead to a definitive trial that will investigate the benefits of treating vitamin D deficiency in patients with CD. TRIAL REGISTRATION: The trial has been registered with EudraCT number 2018-003910-42, ClinicalTrials.gov identifier NCT03718182 and ISRCTN number 15717783.
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Malnutrition is a common condition encountered in patients with inflammatory bowel disease (IBD) and is often associated with sarcopenia (the reduction of muscle mass and strength) which is an ever-growing consideration in chronic diseases. Recent data suggest the prevalence of sarcopenia is 52% and 37% in Crohn's disease and ulcerative colitis, respectively, however it is challenging to fully appreciate the prevalence of sarcopenia in IBD. Sarcopenia is an important consideration in the management of IBD, including the impact on quality of life, prognostication, and treatment such as surgical interventions, biologics and immunomodulators. There is evolving research in many chronic inflammatory states, such as chronic liver disease and rheumatoid arthritis, whereby interventions have begun to be developed to counteract sarcopenia. The purpose of this review is to evaluate the current literature regarding the impact of sarcopenia in the management of IBD, from mechanistic drivers through to assessment and management.
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Doenças Inflamatórias Intestinais/complicações , Desnutrição/etiologia , Sarcopenia/etiologia , Adiposidade , Humanos , Síndromes de Malabsorção , Deficiência de Vitamina DRESUMO
INTRODUCTION: Patients with chronic intestinal failure (IF) require home parenteral nutrition (HPN). Central venous access is needed for prolonged use of PN, usually via a long term central venous access device (CVAD). Post insertion there may be mechanical complications with a CVAD such as catheter rupture or tear. Repair of damaged CVADs is possible to avoid risks associated with catheter replacement in patients with IF. However, catheter related blood stream infections (CRBSI) are a concern when CVAD's are accessed or manipulated. AIMS: To investigate the success of repair of CVADs in patients with IF on HPN, related to repair longevity and incidence of CRBSI following repair. METHOD: Nutrition team records of CVAD repairs carried out in patients with IF were reviewed retrospectively for the period April 2015 to March 2019. RESULTS: Nutrition Clinical Nurse Specialists carried out 38 repairs in 27 patients. Male n = 5, female n = 22; mean age 55 years. Catheter longevity before first repair (n = 27): median 851 days, IQR 137-1484 days. 30/38 (78.9%) of repairs were successful lasting ≥30days. Hospital admission was avoided in 76% of cases. 4 patients in the failed repair group underwent catheter re-insertion where 4 had a further, subsequently successful, repair, an overall success rate of 89.4% (34/38). 30-day CRBSI rate was 0.09/1000 catheter days in repaired catheters. In comparing costs, there is a potential cost saving of 2766GBP for repair compared to replacement of damaged CVADs. CONCLUSION: Repair of tunnelled CVADs in patients with IF is successful and safe with no increased risk of CRBSI. Significant cost savings may be made.
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Obstrução do Cateter/estatística & dados numéricos , Cateterismo Venoso Central/instrumentação , Cateteres Venosos Centrais/efeitos adversos , Insuficiência Intestinal/terapia , Nutrição Parenteral no Domicílio/instrumentação , Obstrução do Cateter/efeitos adversos , Obstrução do Cateter/economia , Infecções Relacionadas a Cateter/economia , Infecções Relacionadas a Cateter/epidemiologia , Infecções Relacionadas a Cateter/etiologia , Cateterismo Venoso Central/economia , Cateteres Venosos Centrais/economia , Análise Custo-Benefício , Feminino , Humanos , Insuficiência Intestinal/economia , Masculino , Pessoa de Meia-Idade , Enfermeiros Clínicos/estatística & dados numéricos , Nutrição Parenteral no Domicílio/economia , Estudos Retrospectivos , Resultado do TratamentoRESUMO
BACKGROUND: Neuroendocrine tumours (NETs) are neoplastic yet behave differently to typical cancers. Despite often being slow growing, they can lead to significant gastrointestinal complications including intestinal failure (IF). The use of home parenteral nutrition (HPN) in neoplastic conditions is rising, primarily for palliation and bridging through treatments for cancer, but remains a challenging decision with a paucity of high-grade evidence-based guidance. METHODS: A retrospective analysis of patients with NET on HPN was performed. Data collected included the cause of IF, complications encountered with HPN and changes in nutritional assessments. RESULTS: Eight patients were identified, all with metastatic NET. Median weight improved following HPN commencement and line sepsis was the sole complication. All patients had stabilisation and optimisation of nutritional and hydration status. CONCLUSIONS: HPN is commenced to improve or maintain patients' nutritional status during often lifelong treatment. The principle aim in providing HPN was to improve survival and quality of life. While NETs are cancers, our case series demonstrates the potential of HPN to actively support longer term survival in the subgroup of patients who develop IF.
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Currently, there is no UK national recommendation to measure vitamin D levels in patients with inflammatory bowel diseases (IBD). Patients with IBD are at risk of developing vitamin D deficiency with the highest prevalence frequently reported in those with Crohn's disease (CD). Treating vitamin D deficiency as part of CD management continues to be of interest. Our aim was to identify influences on practice and self-reported practice among British Society of Gastroenterology (BSG)-IBD section members in the screening and the treatment of vitamin D deficiency in patients with CD. A web-based survey was distributed via email to members of the BSG-IBD section. Reported screening practice was generally annual in those with a history of previous surgery related to CD or small bowel CD. A total of 83% of respondents (n = 64) thought that vitamin D levels should be routinely monitored in patients with CD. Treatments for mild/moderate deficiency included increased sunlight exposure (mean frequency = 21, SD = 15) and dietary advice (mean frequency = 22, SD = 14); in moderate/severe deficiency, oral supplementation was recommended (mean frequency = 14, SD = 13). Respondents reported factors most likely to influence practice, including clearer evidence and guidance. Well conducted studies in CD patients with identified vitamin D deficiency are needed to inform national guidance and clinical practice.
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Doença de Crohn/complicações , Suplementos Nutricionais , Gastroenterologistas , Padrões de Prática Médica , Autorrelato , Inquéritos e Questionários , Deficiência de Vitamina D/diagnóstico , Deficiência de Vitamina D/terapia , Vitamina D/administração & dosagem , Humanos , Fenômenos Fisiológicos da Nutrição/fisiologia , Risco , Luz Solar , Reino Unido , Deficiência de Vitamina D/etiologiaRESUMO
BACKGROUND AND AIM: No marker to categorise the severity of chronic intestinal failure (CIF) has been developed. A 1-year international survey was carried out to investigate whether the European Society for Clinical Nutrition and Metabolism clinical classification of CIF, based on the type and volume of the intravenous supplementation (IVS), could be an indicator of CIF severity. METHODS: At baseline, participating home parenteral nutrition (HPN) centres enrolled all adults with ongoing CIF due to non-malignant disease; demographic data, body mass index, CIF mechanism, underlying disease, HPN duration and IVS category were recorded for each patient. The type of IVS was classified as fluid and electrolyte alone (FE) or parenteral nutrition admixture (PN). The mean daily IVS volume, calculated on a weekly basis, was categorised as <1, 1-2, 2-3 and >3 L/day. The severity of CIF was determined by patient outcome (still on HPN, weaned from HPN, deceased) and the occurrence of major HPN/CIF-related complications: intestinal failure-associated liver disease (IFALD), catheter-related venous thrombosis and catheter-related bloodstream infection (CRBSI). RESULTS: Fifty-one HPN centres included 2194 patients. The analysis showed that both IVS type and volume were independently associated with the odds of weaning from HPN (significantly higher for PN <1 L/day than for FE and all PN >1 L/day), patients' death (lower for FE, p=0.079), presence of IFALD cholestasis/liver failure and occurrence of CRBSI (significantly higher for PN 2-3 and PN >3 L/day). CONCLUSIONS: The type and volume of IVS required by patients with CIF could be indicators to categorise the severity of CIF in both clinical practice and research protocols.
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Emulsões Gordurosas Intravenosas/administração & dosagem , Hidratação/métodos , Enteropatias , Intestinos/fisiopatologia , Nutrição Parenteral no Domicílio , Administração Intravenosa/métodos , Adulto , Infecções Relacionadas a Cateter/complicações , Doença Crônica , Cálculos da Dosagem de Medicamento , Feminino , Humanos , Absorção Intestinal , Enteropatias/etiologia , Enteropatias/fisiopatologia , Enteropatias/terapia , Falência Hepática/complicações , Masculino , Nutrição Parenteral no Domicílio/efeitos adversos , Nutrição Parenteral no Domicílio/métodos , Soluções Farmacêuticas/administração & dosagem , Índice de Gravidade de DoençaRESUMO
BACKGROUND & AIMS: The safety and effectiveness of a home parenteral nutrition (HPN) program depends both on the expertise and the management approach of the HPN center. We aimed to evaluate both the approaches of different international HPN-centers in their provision of HPN and the types of intravenous supplementation (IVS)-admixtures prescribed to patients with chronic intestinal failure (CIF). METHODS: In March 2015, 65 centers from 22 countries enrolled 3239 patients (benign disease 90.1%, malignant disease 9.9%), recording the patient, CIF and HPN characteristics in a structured database. The HPN-provider was categorized as health care system local pharmacy (LP) or independent home care company (HCC). The IVS-admixture was categorized as fluids and electrolytes alone (FE) or parenteral nutrition, either commercially premixed (PA) or customized to the individual patient (CA), alone or plus extra FE (PAFE or CAFE). Doctors of HPN centers were responsible for the IVS prescriptions. RESULTS: HCC (66%) was the most common HPN provider, with no difference noted between benign-CIF and malignant-CIF. LP was the main modality in 11 countries; HCC prevailed in 4 European countries: Israel, USA, South America and Oceania (p < 0.001). IVS-admixture comprised: FE 10%, PA 17%, PAFE 17%, CA 38%, CAFE 18%. PA and PAFE prevailed in malignant-CIF while CA and CAFE use was greater in benign-CIF (p < 0.001). PA + PAFE prevailed in those countries where LP was the main HPN-provider and CA + CAFE prevailed where the main HPN-provider was HCC (p < 0.001). CONCLUSIONS: This is the first study to demonstrate that HPN provision and the IVS-admixture differ greatly among countries, among HPN centers and between benign-CIF and cancer-CIF. As both HPN provider and IVS-admixture types may play a role in the safety and effectiveness of HPN therapy, criteria to homogenize HPN programs are needed so that patients can have equal access to optimal CIF care.
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Inquéritos Epidemiológicos/métodos , Internacionalidade , Enteropatias/dietoterapia , Enteropatias/epidemiologia , Nutrição Parenteral no Domicílio/métodos , Nutrição Parenteral no Domicílio/estatística & dados numéricos , Doença Crônica , Estudos Transversais , Feminino , Inquéritos Epidemiológicos/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Resultado do TratamentoRESUMO
Difficulty with maintaining nutritional intake is common in patients with cancer. European guidance suggests that wherever possible nutritional support should first be provided by the oral or enteral route. Where this is not possible, for example, in malignant small bowel obstruction, parenteral nutrition (PN) may be considered. In palliative care, it is generally accepted that the significant risks and burdens of PN outweigh the potential benefits in patients with an expected survival <2 months. Determining prognosis is crucial when helping patients to make decisions regarding appropriate care pathways; however, this remains challenging. An overview of clinical issues and prognostic indicators related to selecting patients appropriately for palliative PN is given to cover the relevant advanced competencies of the 2010 Gastroenterology Curriculum. The organisation of Home Parenteral Nutrition (HPN) services in England is described including the associated risks and burdens of HPN in the palliative patient.
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BACKGROUND: In 2014, Dudley Group of Hospitals (DGH) underwent an organizational change that necessitated closure of their Home Parenteral Nutrition (HPN) service. University Hospitals Birmingham NHS Foundation Trust (UHBFT) transitioned 50 patients from DGH into their HPN service. The transition model included communication with patients, communication between centers (development of an HPN Patient Passport), and rapid follow-up on transition ensuring clinical care continued uninterrupted. AIM: Evaluate patient experience and their level of satisfaction with our HPN transition model. METHOD: A 19-point, mixed mode paper-based questionnaire was developed. Questionnaires were posted to 42 surviving patients still receiving HPN. RESULTS: Response rate: 67%. Communication with patients: The transition was discussed with them, and they had appropriate contact details during the process-94%. Patients informed of patient transition meetings-97%. Attendance at meetings: DGH 89%, UHBFT 55%. Ongoing care at UHBFT: 86% very satisfied and 11% satisfied. Overall rating of the transition process: 79% very satisfied and 14% satisfied. Friends and Family Test: 82% "extremely likely" and 18% "likely" to recommend our services. CONCLUSION: The transition model used was successful, with the majority of patients "very satisfied" with how the transition was managed and their ongoing care. Effective communication with patients and between the 2 centers was the key to success. To our knowledge, this is the first report of transition of care for HPN patients. It is proposed that this model may be used by other centers to plan for future HPN service transitions where necessary.
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Polyglucosan inclusion body myopathy (PIBM) is a recently described gastrointestinal neuromuscular disease. Given its rarity, very little is known of its natural history and prognosis. In this case report, we present the first case of PIBM and resultant intestinal failure in which, following 7 years of home parenteral nutrition, gastrointestinal symptoms subsided and nutrition autonomy was restored.