Home Parenteral Nutrition Services Research Articles

Funding and resource availability for home parenteral nutrition in Australia: A national cross-sectional survey.

Home parenteral nutrition (HPN) is a life-saving therapy required for the management of type III intestinal failure, one of the rarest organ failures. It requires a multidisciplinary approach to manage the complexity of the underlying medical, surgical, and nutrition issues, but the current levels of healthcare funding in Australia are unknown. This study aimed to quantify the caseload, staffing, and capacity of existing HPN centers nationally. This was a cross-sectional survey inviting centers known to provide HPN care. The survey was designed to capture metrics related to the national framework for the delivery of HPN. These centered on staffing levels, patient load, capacity to audit key outcomes, and service challenges. A total of 24 (89%) of 27 invited centers responded to the survey. There were 17 (71%) adult centers and 7 (29%) pediatric centers. Adult centers managed a median of 12 (interquartile range [IQR]: 6-25) patients vs 16 (IQR: 9-17) in pediatric centers. Several centers did not have dedicated funding for core team members. The total funded clinician time each week per patient was 7 min (IQR: 0-12 min) in adult centers and 14 min (IQR: 10-21 min) in pediatric centers. Fewer than half of centers reported having sufficient resources to regularly audit key metrics. The availability of dedicated expertise to manage the highly complex needs of people living with type III intestinal failure is lacking in Australia. Current funding of HPN services falls well short of being sufficient to meet the requirements outlined in the national quality framework.

A comparison of a home parenteral nutrition service with the current European (ESPEN) guidelines on chronic intestinal failure in adults

Comprehensive evidenced based guidelines on appropriate and safe provision of home parenteral nutrition (HPN) have been developed by the European Society for Clinical Nutrition and Metabolism (ESPEN) in 2016 and 2020. These guidelines provide clinical standards of care against which the current practice of HPN services can be audited. The aim of this study was to audit a single center's current practice against 183 recommendations on supporting patients on HPN. The objective was to measure compliance and identify areas for quality improvement. A retrospective audit of the HPN service received by patients from January 2019-May 2021 was conducted. The ESPEN guidelines were used as a benchmark to measure compliance of healthcare practice. Compliance was evaluated for the 13 subject areas included in the 2016 guideline and the 6 subject areas included in the 2020 guideline. Compliance was calculated as the percentage of criteria fully met for each subject area and an overall compliance rate with each guideline. Overall, compliance with the recommendations from 2016 was 80% and compliance with the recommendations from 2020 was 65%. Within the 2020 guideline there were 24 recommendations where noncompliance was found, 15 of these were due to the absence of a nutrition support team and dedicated intestinal failure unit. This audit and evaluation of current practice has identified areas of good evidence-based healthcare practice providing HPN. However, the absence of funding of a nutrition support team to provide a service to patients on HPN was identified as a major barrier to compliance with ESPEN recommendations in this study.

Factors Associated With Central Line-Associated Bloodstream Infections in a Cohort of Adult Home Parenteral Nutrition Patients.

Central line-associated bloodstream infection (CLABSI) is a potentially life-threatening complication in home parenteral nutrition (HPN) patients. We investigated potential predictors of CLABSI in a cohort of adult HPN patients METHODS: Patients managed by the HPN service at the Hospital of University of Pennsylvania on January 1, 2018, were included and followed through June 30, 2019, using existing medical records to collect demographic and clinical data. CLABSIs were adjudicated prospectively by infectious disease experts. Variables with P ≤ .2, when comparing patients with CLABSIs and those without, were included in logistic regression models. Among 114 patients, mean age was 54 ± 16 years, 78/114 were female, and BMI was 25 ± 5.6. Median experience with HPN was 516 days (range, 15-10,281), and 30 had prior CLABSI. Catheter types were peripherally inserted central catheters (83/114), tunneled (27), and implanted (4). The incidence of CLABSI was 0.89 per 1000 catheter days. One multivariate model identified ostomy/wound (odds ratio [OR], 22.0; 95% CI, 4.8-101.7), tunneled/implanted catheter (OR, 4.4; 95% CI, 1.4-13.9), and BMI < 18.5 (OR, 5.9; 95% CI, 1.4-24.2) as predictors of CLABSI. A second model identified patients with 2 potential predictors (OR, 22.9; 95% CI, 5.6-93.5) and tunneled/implanted catheter (OR, 6.7; 95% CI, 2.1-21.8) at high risk of CLABSI. Whether CLABSIrates might be reduced by more intense training in wound or catheter care (especially for those with multiple predictors), different types of catheters, or rapid treatment of malnutrition will require further study.

A framework to support quality of care for patients with chronic intestinal failure requiring home parenteral nutrition

Chronic intestinal failure requiring home parenteral nutrition (HPN) is a disabling condition that is best facilitated by a multidisciplinary approach to care. Variation in care has been identified as a key barrier to achieving quality of care for patients on HPN and requires appropriate strategies to help standardize management. The Australasian Society for Parenteral and Enteral Nutrition (AuSPEN) assembled a multidisciplinary working group of 15 clinicians to develop a quality framework to assist with the standardization of HPN care in Australia. Obstacles to quality care specific to Australia were identified by consensus. Drafts of the framework documents were based on the available literature and refined by two Delphi rounds with the clinician work group, followed by a further two involving HPN consumers. The Oxford Centre for Evidence-Based Medicine Levels of Evidence was used to assess the strength of evidence underpinning each concept within the framework documents. Quality indicators, standards of care, and position statements have been developed to progress the delivery of quality care to HPN patients. The quality framework proposed by AuSPEN is intended to provide a practical structure for clinical and organizational aspects of HPN service delivery to reduce variation in care and improve quality of care and represents the initial step towards development of a national model of care for HPN patients in Australia. While developed for implementation in Australia, the evidence-based framework also has relevance to the international HPN community.

Non-interventional, retrospective data of long-term home parenteral nutrition in patients with benign diseases: Analysis of a nurse register (SERECARE).

The aim of this study was to evaluate the safety and efficacy of home parenteral nutrition (HPN) service in patients with benign chronic intestinal failure (CIF). This was a 10-y retrospective, non-interventional, multicenter study conducted with adult and pediatric patients with CIF who received HPN service. We analyzed data prospectively collected from a dedicated register by HPN nurses. From January 2002 to December 2011 a total of 794 patients (49.7% male, median age 1 y for children and 57 y for adults) were included in the analysis. Over the 10-y period, 723 central venous catheter (CVC) complications occurred, of which 394 were infectious (54.5%), 297 were mechanical (41.1%), and 32 (3.3%) were defined as CVC-related thrombosis. The complication rate was higher in children (1.11 per patient) than in adults (0.70 per patient). During the observation period, the rates of both infectious and mechanical complications showed a global declining trend and ∼75% of patients had neither infectious nor mechanical CVC complications. HPN efficacy was evaluated in 301 patients with a minimum follow-up of 36 mo. Body mass index and Karnofsky score showed that the median growth significantly increased (P < 0.001) over baseline for adults and pediatric patients in the 0 to 2 age range. The use of a structured register has proved to be a key strategy for monitoring the outcomes of long-term treatment, improving time efficiency, and preventing potential malpractice. To our knowledge, this is the largest survey ever documented; the results were consistent despite the heterogeneity of the centers because of duly applied standard rules and protocols.

Monitoring long-term parenteral nutrition.

This review discusses the monitoring aimed at achieving good long-term outcomes in people dependent on home parenteral nutrition (HPN). There have been recent studies highlighting the importance of treating low bone mineral density in HPN-dependent patients, methods of screening for liver disease, assessment of quality of life (QoL) and the need for early assessment for intestinal transplantation and growth factor therapy. High-quality HPN services require expert multidisciplinary teams with a focus on strict aseptic catheter care protocols alongside regular monitoring and management of clinical, laboratory and patient-related factors. Areas that should be considered in the routine monitoring of HPN include regular laboratory measurements, QoL, assessment for intestinal failure-associated liver disease, treatment of metabolic bone disease and consideration of evolving treatments, alongside management of any underlying condition leading to intestinal failure.

Care pathway for patients with advanced gynaecological cancer and bowel obstruction: Preliminary data

Cachexia is prevalent in more than 50% of patients with advanced cancer and can lead to death. Variation and unequal access to home parenteral nutrition (HPN) exist and cause delay and even lack of nutritional support in patients with incurable gynaecological cancers that develop intestinal failure as a result of malignant bowel obstruction (MBO). HPN services are not integrated into oncology/palliative pathways and care is fragmented. MBO is often multilevel and subacute without an endoscopic or surgical solution [1, 2].

Patient Experience in the Transition of Home Parenteral Nutrition Services Between Centers: Evaluation of a Transition Model.

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.

Burden of Care in Intestinal Failure and Intestinal Transplantation

Introduction: Home Parenteral Nutrition (HPN) remains the first line treatment of Intestinal Failure (IF). The inherent risks associated with PN may mean that Intestinal Transplantation (ITx) is the only option available for these patients. The literature demonstrates that HPN is a significant burden of care for care givers (1). Experience within paediatric centres highlights that this remains following transplantation (ITx). There is a recognised gap between the level of need and the support provided within the community. Aim: To gain a greater understanding of the burden of care for care givers by identifying the long term demands in children with IF or following ITx. To understand the needs of both groups and effectively coordinate the care and support at home. Methods: Questionnaires were distributed to all of the familes of children within the HPN service of a tertiary centre and those under follow up of a paediatric ITx unit. Questions centred on factors such as sleep disturbance, devices and school attendance. Results: A total of 28/28 patients responded (18 HPN and 10 post ITx) with a median age of 7 years (1-15). Of the 18 HPN patients, 4 of those required additional intravenous fluids (IV) and 6 of those were having enteral feeds. Of the 10 post ITx patients, 1 required PN, 1 required IV fluids and 2 were receiving enteral feeds. There is a reduction in the need for devices following ITx however 40% still had an ileostomy. None of the HPN cohort slept through the night, waking a median of 4 times overight (1-10). Only three of the ITx patients slept through the night, waking a median of 2 times (0-7). There is a difference between the number of children toilet trained in the HPN cohort (11/18) compared to the post ITx patients (8/10). Conclusion: Burden of care improves post ITx, but there is a continued need for care. Both cohorts have overnight sleep distrubances. School attendance was higher than anticipated; however there are care needs required at school. Hospital attendance was frequent in both cohorts. These data can be used as a foundation to develop a burden of care tool specific to Intestinal Failure and Intestinal Transplantation. Reference: 1. Zamvar, V, Puntis, J, Gupte, G, Lazonby, G, Holden, C, Sexton, E, Bunford, C, Protheroe, S, & Beath, S 2014, 'Social circumstances and medical complications in children with intestinal failure', Archives Of Disease In Childhood, 99, 4, pp. 336–341.

PTH-219 Prevalence of intestinal failure-associated liver disease within a home parenteral nutrition service

Introduction Intestinal failure-associated liver disease (IFALD) is a potentially life-threatening and historically common complication of long-term parenteral nutrition. In the past two decades advances in catheter sepsis prevention and the development of novel lipid formulations have reduced the prevalence of IFALD. We examined the point prevalence of surrogate markers of IFALD within the home parenteral nutrition (HPN) service at the Royal Berkshire Hospital. Method The records of the HPN service were examined to identify patients receiving HPN between January 2012 and December 2014. Clinic notes, electronic patient records and imaging results were used to extract clinical information. Results Twenty-four patients (13 male; mean age 60 years, range 21–83 years) received long-term home parenteral nutrition during the study period for a mean duration of 25 months (range 3–54 months). Underlying causes of intestinal failure included inflammatory bowel disease (7, 29%), vascular causes (5, 21%), surgical complications including fistulae, sepsis and adhesions (5, 21%), malignancy (4, 17%) and dysmotility (3, 12%). Most patients received a tailor-made PN bag 3–7 days a week (median 5 days a week) with a lipid emulsion (SMOF) bag twice a week. In this cohort 16 patients had persistently abnormal liver biochemistry (raised ALT and/or ALP greater than the reference range for longer than six months). Two patients had mildly elevated bilirubin (1–2 x upper limit of normal). There were no clinical presentations of decompensated liver disease. Nineteen patients had hepatic imaging (ultrasound or CT) during the study period. One patient had splenomegaly secondary to portal vein thrombosis and one patient had ascites related to Budd-Chiari syndrome. No other patients had radiological signs of portal hypertension or cirrhosis on imaging. Three patients underwent transient elastography measurement (Fibroscan ® ) one of which had an elevated reading (10.7kPa, IQR 1.5). Conclusion These results show that two thirds of patients on long-term parenteral nutrition had persistent abnormalities in liver biochemistry which may indicate steatohepatitis. No patients showed signs of cirrhosis on imaging or presented with decompensated liver disease during the three-year study period. Whilst this is a relatively short follow-up period to detect the development of chronic liver disease, previous studies have reported a prevalence of complicated liver disease of 26% after two years of PN. 1 We plan to prospectively monitor liver biochemistry, abdominal imaging and transient elastography in our HPN cohort to assess the natural history of IFALD. Disclosure of interest None Declared. Reference Cavicchi M et al . Prevalence of liver disease and contributing factors in patients receiving home parenteral nutrition for permanent intestinal failure. Ann Intern Med. 2000;132:525–532

OC-039 Improving Quality In A National Intestinal Failure Unit: Greater Efficiency, Improved Access, Reduced Mortality

IntroductionIn 2010, there was a significant waiting list for admission to the Intestinal Failure Unit (IFU) at Salford, one of two current nationally-accredited centres. There had also been a steady...

Adult cancer patients on home parenteral nutrition in Slovenia, data analysis by the Clinical Nutrition Unit of the Institute of Oncology in Ljubljana, in the period 2008–2012.

Introduction : Home parenteral nutrition (HPN) represents a kind of therapy for intestinal failure. The system of HPN for adult patients was established in Slovenia by the Clinical Nutrition Unit of the Institute of Oncology, Ljubljana in 2008. The aim of the article is to analyse Slovenian data on HPN in cancer patients in the four-year period from 2008 to 2012. Patients and Methods : In the time period from 2008 to 2012, 53 cancer patients were included in the HPN system in Slovenia–19 males and 34 females. Results : The average age of the patients at enrollment into the HPN system was 53 years. This represents 74.6 % of all patients on HPN who were registered in our unit in this period. Forty-four patients had advanced cancer and 9 patients had no recurrence of cancer during the observation period. In patients with advanced cancer, tumors of the gastrointestinal tract (15 patients stomach and esophagus, 11 patients colon and rectum) and gynecological cancers (10 patients) were represented most frequently.. Gastrointestinal obstruction (74 %) was the major indication for long-term parenteral nutrition in cancer patients. Thirty-seven patients died during the observation period. Median survival time of patients with advanced cancer was 8 months (95 % CI, 3.61 to 12.39 months). Twenty-seven patients received HPN during anti-cancer therapy (chemotherapy, radiotherapy, surgery). Medians for survival time of patients receiving an anticancer therapy and patients without any therapy were 11 months (95 % CI, 3.72 to 18.28 months) and 2 months (95 % CI, 1.26 to 2.74 months), respectively. The survival of patients with anticancer therapy was significantly longer (p < 0.001). The majority of patients (90 %) had HPN each day, 7 times per week. Twenty-eight patients (52 %) had venous access complications . The most common cause of complication was infection in 16 patients (30 %), which did not shorten the survival time of patients with advanced cancer. The number of VAP complications was time-independent and did not affect the survival of the observed patients. The significance value was 0.44 (95 % CI, 0.153–2.275). Conclusion : The results of the retrospective study represent the first Slovenian data on the survival time of cancer patients on HPN treatment for intestinal failure. The results are comparable to the results from European surveys, which are a direct indicator that inclusion criteria for HPN in cancer patients used in Slovenia are good. Introduction of HPN as a therapeutic option also offers a possibility to continue with anticancer therapy and improve the survival rate of patients with advanced cancer. They are also an indirect sign that the quality of HPN service is good and serves as a platform for further development of HPN in cancer patients in Slovenia, and at the same time for other patients who would need a replacement therapy in the form of HPN owing to intestinal failure.

Trends in paediatric home parenteral nutrition and implications for service development

The demand for home parenteral nutrition (HPN) services for children has risen over the past 20 years. To plan a strategy for delivery of care at regional level, we carried out a national point prevalence survey of HPN during February 2010. Paediatric gastroenterologists in 33 hospitals known to have provided HPN services were identified from their membership of the British Society of Paediatric Gastroenterology, Hepatology andNutrition and participation in the British Intestinal Failure Survey (BIFS). Anonymised data were collated by the BIFS administrator and results compared with a similar study performed by the British Paediatric Surveillance Unit in 1993. Trends in underlying diagnosis were explored using the BIFS database for 2006-2009. 139 children on HPN were reported; a fourfold increase since 1993; six of these were older than 16 years. The regional point prevalence of HPN varied from 1.76 to 41.4 per million, with a mean of 13.7 patients per million. Short bowel syndrome had increased from 27% to 63% of cases. The large overall increase in numbers of HPN patients suggests that a national strategy needs to be developed for the management of chronic IF.

Recent developments in the delivery of home parenteral nutrition in the UK.

The British Artificial Nutrition Survey 2001 recorded 507 home parenteral nutrition (HPN) patients (Crohn's disease 31.5%, vascular disease 19.7%, cancer 6.9%). Parenteral nutrition was administered via tunnelled central line (92%) and supplied by a commercial homecare company in 89% of cases. The majority of HPN patients live at home (95.5%) with an independent life (74%), normal activity (59.2%) and 92% survive 1 year. However, there is good evidence that the geographical distribution of HPN patients is uneven (prevalence no patients to thirty-six patients per million of the population) suggesting inequity of access. Patients are increasingly concerned about the distances travelled to main centres and variable standards of more local support. Funding issues continue to cause difficulties as commissioning of health care transfers from Health Authorities to Primary Care Trusts. The two nationally-funded intestinal failure units provide HPN services to 220 HPN patients. HPN-related readmissions have displaced those awaiting admission for intestinal failure treatment, for which the waiting list mortality in one unit has risen to 14%. The government has now recognised HPN as a specialised service distinct from intestinal failure and that existing medium-sized HPN units should be encouraged to take on HPN patients from intestinal failure units and smaller units. In Scotland a Managed Clinical HPN Network supported by the Scottish administration now cares for seventy-two patients under common protocols. The challenge for the future is how to provide high-quality care to all who need it in the rest of the UK.

Survey of Home Nutritional Support Patients

Patients receiving home parenteral nutritional services from a major corporate provider were surveyed using a written questionnaire. The survey questioned the patients about use of home parenteral nutritional services and the quality of life while receiving home parenteral therapy. Patient satisfaction with home nutritional support services, and the impact home therapy has on patient medical, financial and psychosocial status were examined. Life satisfaction measures were compared with that of end stage renal disease patients and the overall United States population. Of the 1140 patients sent the written questionnaire, 347 (30.4%) returned the survey. Half the patients had been placed on home parenteral nutrition services because of short bowel syndrome. The mean length of time respondents had been receiving home parenteral nutrition services was 35 months, reporting approximately one hospitalization per year due to complications of their home parenteral nutrition. Blood infection with catheter as focus was most frequently reported as being responsible for hospitalization. The number of hospitalizations due to complications of home parenteral nutrition therapy was positively correlated with length of time on the program. Overall, respondents were satisfied with their home nutrition services, but were less satisfied with life as a whole when compared to the overall United States population and to end stage renal disease patients.

10 Problems and organization of a home parenteral nutrition service

Home parenteral nutrition services have revolutionized the treatment, and improved the survivial, of patients with prolonged or permanent intestinal failure. Without such a programme, these patients either would be condemned to continuous in-patient parenteral nutrition or to death. The indications for HPN in the UK remain predominantly intestinal failure resulting from inflammatory bowel disease, and major small bowl resection. Nearly 50% of patients receiving HPN will ultimately have normal intestinal function restored and thus be able to return to enteral feeding. This knowledge is reflected in the selection criteria for instituting HPN. The use of HPN in patients with malignant disease poses significant ethical questions. The success of HPN is dependent upon the organization of nutritional units to allow centralization of HPN programmes and to provide the necessary support to patients. It is clear that not all patients will benefit from HPN, and it is only by careful assessment of patients, based on the experience of specialized nutritional units, that a rational HPN service can be provided.