Home Parenteral Nutrition Population Research Articles

A98 EFFECT OF A PROLONGED MULTIVITMAIN SHORTAGE ON HOME PARENTERAL NUTRITION PATIENTS: SINGLE CENTRE EXPERIENCE

Abstract Background Multivitamin shortages in home parenteral nutrition (HPN) are scarce but have a significant impact on patient morbidity. Recently, Ontario, Canada experienced a HPN intravenous multivitamin shortage that lasted over 3 months. As per the American Society of Parenteral and Enteral Nutrition (ASPEN) guidelines, patients were instructed to use an over-the-counter multivitamin supplement during the shortage. However, due to the nature of HPN patients, the risk for malnutrition related complications remains high, specifically thiamine deficiency. Aims This study aims to assess the relationship between the multivitamin shortage and thiamine deficiency. We conducted an analysis before and after the intravenous multivitamin shortage in HPN patients and compared anthropometric, biochemical and clinical outcomes in those who followed the oral multivitamin recommendation versus those who did not. Methods This retrospective descriptive study included HPN patients in a single-centre program in Toronto, Canada who required HPN ≥ 5 days/week. These patients were followed throughout the multivitamin shortage which lasted from February - June 2023. Patients were categorized into two groups: those who consumed an oral multivitamin and those who did not. Clinical and biochemical data were collected pre and post-multivitamin shortage. Data was collected on compliance with taking oral multivitamins. The primary outcome was the presence of any adverse clinical outcome related to a micronutrient deficiency. Results Twenty-five HPN patients were included. 56% (n=14) of patients were compliant with oral multivitamin usage and met the ASPEN recommendations for supplementation. Compliant patients were significantly older and were on significantly longer duration of HPN. Two patients were diagnosed with WE and had brief hospitalizations. Both patients experienced complete resolution of their symptoms after treatment with high-dose thiamine. Hence, compliance with oral multivitamins did not correlate to developing WE. The median time from the shortage to the development of WE was 2 months. Though not statistically significant, those who developed WE were more likely to be female, utilized a venting gastrostomy tube, and utilized HPN for longer. Conclusions Complications related to micronutrient deficiency are rare in the HPN population but shortages in intravenous multivitamins can increase the risk of conditions such as WE. In our study, compliance with oral multivitamins did not guarantee protection from developing adverse outcomes, likely due to limitations in absorption due to altered gastrointestinal anatomy. A regimented protocol for screening should be implemented in HPN patients, especially during long shortages of key HPN components like multivitamins. Funding Agencies None

Superior vena cava syndrome in chronic intestinal failure patients: When the going gets tough

Catheter-related venous thrombosis is a severe complication of home parenteral nutrition (HPN) with potentially devastating consequences such as superior vena cava syndrome (SVCS). Early recognition and awareness of factors leading to its development are of paramount importance. However, studies are lacking in HPN patients focusing on this topic. In this study, we aimed to determine the incidence of SVCS in HPN patients and describe SVCS-related outcomes. This retrospective cohort study comprised all adult HPN patients who developed SVCS between 2000 and 2022 at our national HPN referral center. Primary outcome was the incidence of SVCS. Secondary outcomes include SVCS-related symptoms, tip location of central venous access device (CVAD) post-insertion and at time of SVCS, diagnostics and treatment. SVCS was diagnosed in 38 of 616 patients (6%), with an annual cumulative incidence rate ranging between 0 and 4.2%. Most common presenting symptoms were facial edema (82%) and arm edema (50%). Post-insertion, 17% (6/36) of patients had a correct position of the CVAD tip and 11% (4/36) during SVCS diagnosis. Computed tomography was the most used diagnostic imaging technique (66%). Sixty-three percent of patients started, 11% switched, and 21% continued anticoagulant treatment. The incidence of SVCS is relatively high in our vulnerable HPN population. It is key to recognize whenever such patients present with vascular obstruction-related symptoms and treat them in an early stage by a multidisciplinary team.

Evaluation of urinary chloride dipsticks for the rapid estimation of hydration status in patients receiving artificial nutrition: Feasibility study

The home parenteral nutrition (HPN) population face many challenges, especially with respect to fluid balance management. A low urinary sodium concentration of <20mmol/L is commonly used as an indicator of dehydration that requires clinical assessment in these patients. The Quantab titrator dipstick measures chloride concentration of a solution and correlates with sodium concentration. We assessed whether it would be feasible to use the Quantab dipstick in the HPN population and explored relationships between Quantab dipstick estimated chloride concentration and quality of life (QOL). Patients on HPN were asked to collect urine samples at 5 specific times points (day 0,7,14, 21 and 28) to send to the laboratory for formal electrolyte analysis. The participant and a member of laboratory staff tested these samples with the Quantab dipstick to estimate urinary chloride concentration. Participants were instructed to complete a QOL questionnaire at each of the 5 time-points in addition to a baseline demographic questionnaire and an end-of-study questionnaire. Six participants completed an interview at the end of the study period. The relationship between participant-derived and laboratory-derived data was assessed using rank correlation coefficients. QOL assessment was correlated with urine dipstick measurements. 10 patients on HPN completed the study. Data on chloride concentration as estimated by the dipstick (assessed by participants and by the laboratory) and sodium concentration from the laboratory were available for 47 urine samples. There was a positive relationship between participant dipstick estimated chloride concentration and laboratory sodium (Kendall's τ=0.45; P<0.001; Spearman's rs=0.58P<0.001; 47 pairs). There was a strong correlation between chloride concentrations estimated by dipstick in the laboratory and by participants (Kendall 0.58 p<0.001, Spearman's 0.69 p<0.001; 47 pairs). In exploratory analyses, there was no relationship between QOL and dipstick estimated chloride concentration. Participants had no issues collecting urine samples but some difficulties were reported with determining the dipstick reading. Patients on HPN are able to collect urine specimens, complete QOL questionnaires, and are capable of using the Quantab dipstick to estimate urinary chloride concentration. The Quantab dipstick correlates with laboratory measured sodium and chloride concentrations. Further work is required to fully establish whether this point-of-care test could be used to guide fluid balance management in the HPN population.

Outcomes associated with strong opioid use for non-cancer pain in patients with chronic intestinal failure

Rationale: Opiates have a role as a part of multimodal therapy for management of non-cancerous pain in carefully selected patients. Previous studies in intestinal failure (IF) showed that over one third of home parenteral nutrition (HPN) patients were using opioids on a regular basis. This study aim to evaluate the prevalence of opioids use in an HPN population and the outcomes associated with its use.

Standardized and Individualized Parenteral Nutrition Mixtures in a Pediatric Home Parenteral Nutrition Population.

Studies evaluating efficacy or safety of standardized parenteral nutrition (PN) versus individualized PN are lacking. We aimed to assess effects on growth and safety of standardized PN compared with individualized PN in our Home PN group. Descriptive cohort study in Dutch children on Home PN, in which standardized PN was compared with individualized PN. Both groups received similar micronutrient-supplementation. Primary outcome was growth over 2 years, secondary outcomes were electrolyte disturbances and biochemical abnormalities. Additionally, patients were matched for age to control for potential confounding characteristics. Fifty patients (50% girls, median age 6.5 years) were included, 16 (32%) received standardized PN mixtures. Age (11 vs 5 years), gestational age (39.2 vs 36.2 weeks) and PN duration (97 vs 39 months) were significantly higher in the group receiving standardized PN (P: ≤0.001; 0.027; 0.013 respectively). The standardized PN group showed an increase in weight-for-age (WFA), compared with a decrease in the individualized PN group (+0.38 SD vs -0.55 SD, P: 0.003). Electrolyte disturbances and biochemical abnormalities did not differ. After matching for age, resulting in comparable groups, no significant differences were demonstrated in WFA, height-for-age, or weight-for-height SD change. In children with chronic IF, over 2,5 years of age, standardized PN mixtures show a comparable effect on weight, height, and weight for height when compared with individualized PN mixtures. Also, standardized PN mixtures (with added micronutrients) seem noninferior to individualized PN mixtures in terms of electrolyte disturbances and basic biochemical abnormalities. Larger studies are needed to confirm these conclusions. Academical Medical Center medical ethics committee number W18_079 #18.103.

P3.32: Safety and efficacy of standardized versus individualized parenteral nutrition mixtures in a pediatric home parenteral nutrition population

P3.32: Safety and efficacy of standardized versus individualized parenteral nutrition mixtures in a pediatric home parenteral nutrition population

Cost analysis of chronic intestinal failure

Chronic intestinal failure is a complex medical condition which is associated with high costs. These patients require long-term home parenteral nutrition (HPN) and costs are compounded by frequent admissions for the underlying disease and HPN. However, it is unknown what the specific costs subdivisions are and how they evolve over time. The aim of the study was to evaluate the cost dynamics of HPN care in a cohort of stable, long-term intestinal failure patients. A retrospective analysis of our single-center long-term (>2 years), benign HPN population was performed. All relevant clinical and financial data were collected: costs of hospital admissions, diagnostics, treatments, out-patient clinics, home care, medication, materials and HPN education. The costs were tabulated and assigned by cause (HPN related, underlying disease-related or -unrelated). Patients with complicated intestinal failure (defined as impending loss of vascular access, liver failure or recurrent fluid/electrolyte disorders) were excluded. Data are presented as median (range). Thirty-seven patients (24 female; age 58.6±13.3 years) were included in the study. HPN duration was 5.3 years (2.1-15.1) at 4.3 infusion days per week (1.5-7). Total cost of the first HPN year was €83,503 (35,364-256,780). HPN-related costs accounted for 69% (€57,593) vs 27% for underlying disease-related costs (€22,505) and 4% for disease-unrelated costs (€3065). HPN complications cost €16,077 in the first year and accounted for 31% of HPN costs. The total cost dropped by 15% in the second year to €71,311. This reduction was due to fewer hospital admissions and fewer HPN complications. This trend continued and by year 5 the annual cost was 40% cheaper compared to year 1 (€58,187 vs €83,503). HPN related costs accounted for the majority of the total expenses in IF patients. The costs declined after the first year due to a reduction in complications and hospital admissions.

Long-Term Use of Mixed-Oil Lipid Emulsion in Adult Home Parenteral Nutrition Patients: A Case Series.

Despite providing significant benefits, home parenteral nutrition (HPN) can be associated with complications such as infections, intestinal failure-associated liver disease, and metabolic abnormalities. Soybean oil (SO)-based intravenous lipid emulsion (ILE) has been noted to contribute to some of these complications, leading to the development of alternative sources of ILE. Mixed-oil (MO) ILE has recently been approved for use in adults with short-term studies revealing a benefit over SO ILE. Currently there is a paucity of data regarding long-term use in the HPN population. The current study reports our experience with MO ILE in 9 HPN patients. A total of 9 patients (3 women and 6 men) with average age of 48.1 ± 15.1 years and a median HPN use of 9.9 years (9.0 months-30.7 years) were transitioned from SO ILE to MO ILE as a result of intolerance. The 9 patients tolerated MO ILE well for 140.7 ± 29.7 days. The percentage of calories provided through ILE increased from 7.6 ± 6.5% to 18.4 ± 8.2% (P = .003), whereas the dextrose decreased from 66.9 ± 8.4% to 56.9 ± 5.5% (P = .0007). Although statistical significance was not reached, there was a trend toward improvement in alkaline phosphatase from 138.0 (52-884) to 106 (47-512; P = .09). MO ILE was well tolerated in this small cohort and led to improvement in the macronutrient composition of HPN while providing a trend toward improvement in liver studies. These results are promising; however, additional randomized control trials are needed to delineate the true benefit.

Using Telemedicine to Identify Depressive Symptomatology Rating Scale in a Home Parenteral Nutrition Population.

Home parenteral nutrition (HPN) is a life-long daily 12-h intravenous nutrition infusion therapy that corrects for nutrient imbalances caused by a malfunctioning gastrointestinal tract outside a medical inpatient setting. Patients utilizing HPN face psychosocial challenges, particularly depression, that often goes undetected due to the lack of daily interactions with health care professionals. Telemedicine, as a mode of treatment, can assist health care professionals in the detection of depression by increasing accessibility to patients. Therefore, in the current study, we investigate the feasibility in assessing depressive symptomatology using telemedicine within a long-term HPN population. We hypothesized that telemedicine would be a viable mechanism by which trained health care professionals could monitor and identify depressive symptomatology within the long-term HPN population. Raters coded 25 facilitated group discussions with the modified Raskin scale (a 21-item observer rating scale; M = 3.28, SD = 3.46) and compared it to the Patient Health Questionnaire-9 (PHQ-9) at baseline (M = 7.88, SD = 5.46) and 4 months (M = 7.76, SD = 5.64). Our results suggest that the modified Raskin scale demonstrated evidence of poor concurrent validity the scale displayed strong predictive validity. Thus, the modified Raskin scale showed promise as a tool for health care professionals, who wish to use telemedicine as a treatment avenue to detect and monitor depression among long-term HPN patients.

Content Validation of a Home Parenteral Nutrition-Patient-Reported Outcome Questionnaire.

Patient-reported outcome (PRO) instruments collect information from patients about health conditions and disease management, including quality of life (QOL). Clinicians acknowledge patient concerns about QOL but need guidance to assess the nature and severity of individually experienced problems. The Home Parenteral Nutrition (HPN)-Patient-Reported Outcome Questionnaire (PROQ) was developed for use during medical appointments or homecare visits to address this gap. The purpose of this research was to provide evidence that the HPN-PROQ items and scale possess content validity. A mixed-method study design was used. In phase 1, cognitive interviews (CIs) were conducted with 32 HPN patients. Thematic analysis was used to assess participant understanding of the instructions, items, and response scales and overall utility of the HPN-PROQ. In phase 2, 13 expert clinicians evaluated the relevance of items to the HPN population using the Content Validity Index (CVI) to produce item-level (I-CVI) and scale-level (S-CVI) scores. Items with an I-CVI score ≥0.783 were retained. Fifty-four percent of items were deemed as being comprehensible, acceptable, and clear; 25% were revised; and 11% were deleted. In phase 2, 79% of items were rated highly relevant. The S-CVI score was 0.96. The final HPN-PROQ contains 34 items. This study established acceptable content validity of the HPN-PROQ. This PROQ may help foster patient-clinician communication about lifestyle adaptation and QOL.

Peripherally Inserted Central Catheter Experience in Long-Term Home Parenteral Nutrition Patients

Parenteral nutrition is administered through a central venous catheter(CVC). Peripherally inserted central catheters (PICC) are appropriate for home parenteral nutrition (HPN). The objective of this study was to examine a group of HPN patients with a PICC in place for more than six months, and the complications associated with PICC removal. Medical records from one home infusion pharmacy were retrospectively reviewed for PICC characteristics and complications leading to removal. Nineteen adult HPN patients had 26 PICC placements. Total PICC days were 22,262 with a mean of 856 (265-2500) days. Seven PICCs were in place for 3 to greater than 5 years. The overall complication rate was 0.58/1000 CVC days. Catheter related bloodstream infection (CRBSI) was the main cause of PICC removal. There was no evidence of symptomatic thrombosis. Patients experienced no infusion related complications. The PICCs were 88% polyurethane, 65% double lumen, and 54% were 5 Fr. No patient received alcohol or antibiotic lock therapy, and 8 patients had successful alteplase administered at least one time. All patients needed caregiver assistance for site care and dressing changes, but were independent in HPN infusion and flushing. This group of patients demonstrated that PICCs are a viable option HPN administration. The PICC overall complication rate was very low, and the most frequent complication leading to removal was CRBSI. The infection rate of 0.36/1000 CVC days is considered very low in an HPN population. This is the only HPN infusion study to date reporting 7 PICCs lasting 3 or more years, with 2 lasting greater than 5 years without complications resulting in removal. Patients received their prescribed therapy reliably and without interruption with this device. Larger studies are needed to confirm the efficacy of maintaining a PICC for very long-term HPN administration.

Peripherally Inserted Central Catheter Experience in a Home Parenteral Nutrition Population

Peripherally Inserted Central Catheter Experience in a Home Parenteral Nutrition Population

PTH-208 Home parenteral nutrition (HPN) in palliative oncology patients – a UK single centre case series with survival analysis

Introduction HPN support should be a nutritional management strategy in patients who cannot meet their nutritional requirements by oral or enteral routes and those who are eligible to receive therapy outside an acute-care setting. 1 However, use of HPN in incurable patients who cannot eat remains controversial and is only accounted for by approximately 8% of the UK HPN population. 2 We therefore aimed to describe the HPN palliativeoncology cohort at University College London Hospital (UCLH) and identify what factors determine their survival rates and performance status. Method Data was collected retrospectively and prospectively for palliative oncologypatients receiving HPNthrough hospital computer systems and databases stored by members of the Nutrition team at UCLH between 01/01/2006 to 31/12/2014 (censor date). Survival time was expressed in weeks, Kaplan Meier curves were plotted and performance status was obtained using Karnofsky score (KPS). Results A cohort of n = 65 (n = 12 active at analysis) palliative oncology patients (male 36.9%, median age 56 years) recieved HPN at UCLH from 2006–2014. Cancers of the following aetiologies comprised most of the cohort: upper gastrointestinal (n = 13, 20%); lower gastrointestinal (n = 15, 23%); and gynaecological (n = 24, 36.9%). The main indicator for HPN was bowel obstruction (n = 44). Overall mean/median survival was 22.4 and 10 weeks (range: 0.4 to 193.3), respectively (Figure 1). Survival also differed by malignancy (mean/median survival-weeks: upper gastrointestinal 10.3/6.4; lower gastrointestinal 24.8/10.7), gynaecological 28.1/8.3). Overall median KPS was 50. The correlation between KPS and survival from discharge to death was r = 0.315 (P Abstract PTH-208 Figure 1 Survival of palliative oncology HPN patients (N = 65) Conclusion Our results show there is an indication for HPN in palliative oncology patients as it may increase survival period post hospital discharge however this may differ by underlying malignancy. In addition, HPN may improve performance status. Further research is required into patients’ quality of life to provide holistic as well as medical insights into HPN in this patient group. Disclosure of interest None Declared. References Staun M, et al . ESPEN guidelines on Parenteral nutrition: Home Parenteral Nutrtiion (HPN) in adult patients. Clin Nutr. 2009:467–479 BANS: Annual BANS Report, 2011; Artificial Nutrition Support in the UK 2000–2010. www.bapen.org.uk

A Descriptive Study of the Risk Factors Associated With Catheter-Related Bloodstream Infections in the Home Parenteral Nutrition Population.

Home parenteral nutrition (HPN) is increasingly used for nutrition support after patients are discharged from the hospital. Catheter-related bloodstream infections (CR-BSI) are a common and potentially fatal complication of HPN. The risk factors for development of CR-BSI in the outpatient setting are poorly understood. We conducted an observational, retrospective study of 225 patients discharged from Barnes-Jewish Hospital on HPN between January 1, 2007, and December 31, 2009. HPN complications were defined as any cause that led to either premature discontinuation of HPN therapy or catheter replacement. CR-BSI events were identified by provider documentation. We calculated the overall complication rate and the complication rate specifically due to CR-BSI. Backward stepwise Cox regression analyses were used to assess for independent predictors of catheter-related complications. In total, 111 of 225 patients (49%) developed complications while receiving HPN (incidence = 5.06 episodes/1000 catheter days). Sixty-eight of 225 patients (30%) required catheter removal for CR-BSI (incidence = 3.10 episodes/1000 catheter days). Independent predictors of line removal specifically due to infection included anticoagulant use, ulcer or open wound, and Medicare or Medicaid insurance. The following risk factors were associated with catheter-associated complications and/or CR-BSI: the presence of ulcers, the use of systemic anticoagulants, public insurance (Medicare or Medicaid), and patient age. Independent predictors of line removal for any complication included age and anticoagulant use. Catheter-related complications were extremely common in patients receiving HPN. Healthcare providers caring for individuals who require HPN should be aware of risk factors for complications.

Taurolidine locks significantly reduce the incidence of catheter-related blood stream infections in high-risk patients on home parenteral nutrition

Emerging evidence suggests taurolidine reduces the risk of repeated episodes of catheter related blood stream infections (CRBSI) in a subgroup of patients receiving home parenteral nutrition (HPN). We defined 3 indications where taurolidine could be considered and retrospectively analysed data from patients who were treated over a 10 year period to examine the validity of these criteria. Twenty-two patients were identified from a total HPN population of 81, representing 33.2 years of experience. The overall CRBSI rate pre- and post-taurolidine usage was reduced from 5.71 to 0.99 infections per 1000 patient parenteral nutrition days (P-value <0.0001), with reductions identified in each smaller subgroup, confirming previous reports of a significant reduction in infections when taurolidine is used as secondary prophylaxis and providing initial data suggesting the benefit of its use as primary prophylaxis.

OC-072 Are surgeons a positive or negative influence on the HPN population?

IntroductionThe aim of this study was to establish the number of patients in whom surgery led to Home Parenteral Nutrition (HPN) in comparison to the number in whom surgery led...

Central Venous Catheter Thrombosis Associated With 70% Ethanol Locks in Pediatric Intestinal Failure Patients on Home Parenteral Nutrition

Central venous catheter (CVC) ethanol locks may reduce catheter-related bloodstream infection (CRBSI). Four children with intestinal failure on home parenteral nutrition (HPN) were selected for 70% ethanol locks because of their high rate of CRBSI. The 70% ethanol locks were instilled at a volume equal to the estimated internal volume of the CVC. Two children (aged 4 and 11 years) received 70% ethanol locks as CRBSI prophylaxis; another 2 children (aged 10 and 11 years) received 70% ethanol locks as adjunctive treatment for CRBSI. All 4 children developed either visible thrombosis in the CVC or CVC occlusion. To the authors' knowledge, this is the first report of CVC thrombosis associated with ethanol lock therapy in the pediatric HPN population. Although none of the CVCs were removed due to occlusion, these events raise serious concerns about the use of high-concentration ethanol locks.

Zinc: An Essential Trace Element for Parenteral Nutrition

Zinc is an essential trace element for human nutrition that is an integral part of many enzyme systems, including DNA polymerase complex. Zinc deficiency has been associated with stunting of growth and sexual immaturity. In children, deficiency causes a fatal condition called acrodermatitis enteropathica. The same syndrome has been observed in patients on total parenteral nutrition (TPN) who do not receive zinc. In TPN the requirements have been estimated by balance studies to be 3 mg/d in patients without gastrointestinal losses and a mean of 12 mg/d in patients with diarrhea and fistula losses.

Epidemiology of Blood Stream Infections in a Hospital-Based, Home Parenteral Nutrition Program

Purpose: Parenteral nutrition (PN) is a life-saving intervention for an increasing number of patients with intestinal failure but home PN (HPN) is also associated with complications, one of the most serious being blood stream infections (BSI). Data on PN-related BSI relate predominantly to short-term, in-hospital occurrences and there is a paucity of data specifically addressing the spectrum of BSI in HPN programs. This study's aim is to quantify the infectious complications, responsible for significant morbidity and mortality in the HPN population in our program. Methods: A retrospective review was conducted of patients enrolled in the Hamilton Health Sciences HPN program. Patients receiving HPN between 11 March 2001 and 5 December 2008 were included if they had documented date(s) for line insertions(s), and documented length of course of HPN. Patient charts were reviewed to extract data on indication for HPN, underlying disease(s), patient age, duration of PN therapy, type and date of insertion of central venous access device. Data on BSI were collected from the patients' charts by review of the microbiology records within the designated inclusion period. Results: 155 patients (164 courses of HPN) were included for a total of 43887 days of HPN. The mean age of the patients was 49 years old and 105 (64%) of patients were female. A total of 112 organisms were cultured, and 90 distinct episodes of blood stream infections were identified. Gram positive organisms accounted for 64% of isolates, gram negative and fungal organisms for 27% and 9%, respectively (Table 1). The rate of BSI was 2.1 per 1000 catheter days. In order to account for possible skin flora contaminants, one of two positive culture results for coagulase negative Staphylococcus (CoNS) and Diphtheroid bacilli were excluded and yielded an alternative BSI rate of 1.3 per 1000 catheter days.Table: Table. Characteristics of 112 pathogens isolated in 90 blood stream infections in HPN patientsConclusion: In our large heterogeneous group of HPN patients, BSI rates ranged between 1.3 and 2.1 infections per 1000 catheter days. The type of organism cultured were found to be mostly gram positive organisms and as such more similar to those seen in the inpatient population. The rates of infections were not lower than those seen from other centers and indicates that BSIs remain frequent occurrences with the potential for significant morbidity, mortality and cost.

The development and translation of a treatment-specific quality of life questionnaire for adult patients on home parenteral nutrition

Summary Background & aims Quality of life (Qol) is an important measure in the current healthcare climate, and a potentially useful clinical indicator in the use of home parenteral nutrition (HPN). Although it is acknowledged as being of importance, there is little available data as there is currently no validated quality of life questionnaire specifically for HPN. The aim of this study was to develop a treatment-specific questionnaire and to produce translations to allow cross-cultural sampling to measure the quality of life of patients receiving HPN. Methods Using published guidelines, the development of the HPN–QOL © involved qualitative research methodology, literature reviews, semi-structured interviews with health professionals and patients, and pilot testing. Results Fifteen relevant Qol domains were generated from the literature and semi-structured interviews with health professionals and patients. From this, a 57-item questionnaire was conceptualised into eight multi-item and one single-item functional scales, eight multi-item and one single-item symptom scales, two HPN-specific items and three global Qol analogue scales. Using published translation procedures; the HPN–QOL © was translated into Danish, Dutch, French, German, Italian, Polish, and Spanish. Conclusions A treatment-specific questionnaire for the assessment of Qol of adult HPN patients has been prepared and formally translated into seven European languages. Pilot studies are underway to identify and solve any potential problems in translation so that the questionnaire can be expressed clearly in the language of translation. The purpose of the HPN–QOL © is to assess the Qol of the HPN population and to evaluate changes in individual patient Qol throughout treatment. The use of this questionnaire should become part of the routine clinical management of HPN patients.