Quality of life in patients on permanent home parenteral nutrition

A psychosocial survey of patients on permanent home parenteral nutrition (HPN) has been made to assess the quality of life in these patients. All patients on permanent HPN in the period August 1978 to August 1979, including 7 women and 6 men, age range 24-62 yr (median 53) were interviewed, as well as partners of 11 patients who were married or cohabiting. The duration of HPN ranged from 2-43 mon (median 24 mon). They were asked specific questions about physical symptoms, social and leisure activities, interpersonal relationships, sexuality, psychological problems, and feelings about HPN. None had an outside job, but 6 (46%) did most of the housekeeping. Some physical distress was recorded in almost all patients, but 9 (69%) considered themselves healthy or fairly healthy, whereas 4 (31%) felt diseased. Social and leisure activities were normal or only slightly impaired in most. Sexual activity had ceased completely in 5 above 55 yr, in association with onset of the disease; younger patients displayed normal and unchanged sexual activity. Psychological symptoms were recorded in 6 (46%), major symptoms in 4 (31%). Seven partners considered HPN to be a moderate or severe burden, mainly psychological changes in the patient that caused marital tension in 3 cases. Criteria for quality of life were: 1) no major physical distress, 2) no major psychological symptoms, 3) no substantial restriction of social and leisure activities, 4) ability to accept HPN, 5) overall satisfaction with conditions of life. Nine patients who fulfilled at least 3 of these criteria were considered to have a fair quality of life, 4 who complied with less than 3 of the criteria a poor quality of life. The interviews were repeated at intervals of 6-10 mon in 9 patients, and revealed no systematic improvement or deterioration of quality of life during HPN.     

Long-term outcome and quality of life of adult patients on home parenteral nutrition

The outcome and prognosis of home parenteral nutrition (HPN) patients may depend on their age and underlying disease and on HPN techniques. Results in the literature are confounded by mixing child and adult populations, short- and long-term HPN treatments and malignant and non-malignant cases. Only four papers have reported the probability of survival and only one of these used multivariate analysis. The quality of life of HPN patients, focusing on community and social rehabilitation, has been reported. The aspects of treatment differ depending upon the circumstances under which HPN is started (acute vs chronic) and the nature of the disease, facts which have to be taken into account in patient management. Prognosis of the underlying disease obviously has a major influence on how rehabilitation is viewed. Patients should be informed of the objectives of HPN by the nutrition team and family circumstances taken into account, before time-consuming and expensive HPN treatment is started.     

Quality of life and length of survival in advanced cancer patients on home parenteral nutrition

BACKGROUND: The use of home parenteral nutrition (HPN) in patients with advanced cancer is controversial because survival is usually short and there are no data regarding the quality of life (QoL). METHODS: Sixty-nine advanced cancer patients enrolled in a program of HPN in six different Italian centers were prospectively studied as regards nutritional status (body weight, serum albumin, serum transferrin and total lymphocyte count), length of survival and QoL through the Rotterdam Symptom Checklist questionnaire. These variables were collected at the start of HPN and then at monthly intervals. All these patients were severely malnourished, almost aphagic and beyond any possibility of cure. RESULTS: Nutritional indices maintained stable until death. Median survival was 4 months (range 1-14) and about one-third of patients survived more than 7 months. QoL parameters remained stable till 2-3 months before death. CONCLUSIONS: HPN may benefit a limited percentage of patients who may survive longer than the time allowed by a condition of starvation and depletion. Provided that these patients survive longer than 3 months, there is some evidence that QoL remains stable for some months and acceptable for the patients.     

Quality of life on home parenteral nutrition: a single centre study of 37 patients

Quality of life was assessed in 37 patients receiving home parenteral nutrition (HPN) for intestinal failure. A questionnaire was developed specifically for this purpose and the results were compared with those obtained by subjective assessment using a simple linear scale. The majority of patients (n = 26, 70.3%) had a good objective quality of life and most (n = 16, 53.3%) of those eligible (n = 30, 81.1%) did not express an interest in intestinal transplantation. Despite the apparent good quality of life enjoyed by patients receiving HPN, there were numerous areas in which patients with intestinal failure felt that their quality of life left much to be desired: many patients reported significant psychological symptoms (n = 15, 40.5%) sexual (n = 10, 27.0%) and social dysfunction (n = 19, 51.3%) and most patients with intestinal failure were unable to return to work (n = 24, 88.9%). Detailed quality of life assessment reveals that there is much still to be done to ensure that provision of care for patients with intestinal failure involves not only prolongation of life but also an improvement in quality of life.     

Quality of life in long-term home enteral nutrition patients

BACKGROUND AND AIMS: Few data are available on the quality of life of home enteral nutrition (HEN) patients. This study was designed to assess both the quality of life of long-term HEN patients and the evolution of quality of life after initiation of HEN. METHODS: Quality of life-related parameters were analysed in 38 patients (24M, 14F) aged 56 +/- 5 years who had been on HEN for more than 2 months (mean 25 +/- 5 months). Patients or close relatives were asked to answer a subjective assessment questionnaire, and patients with normal consciousness (n+ 24) answered the self-administered SF-36 and EuroQol questionnaires. RESULTS: Since the initiation of HEN, patients had spent 1.9 +/- 0.5% of the time in the hospital, in 54% of cases because of HEN-related complications. Analysis of the generic questionnaires revealed poorer quality of life parameters in comparison to a general population, although better results were sometimes observed in younger patients (under 45 years), patients without cancer, and patients with more than one care-giver. Nevertheless, the patients' subjective assessment of the changes in their quality of life since beginning HEN was generally good, with most patients reporting improved or stable mental and physical well-being. CONCLUSIONS: Quality of life is poor in HEN patients, but subgroups of patients who score better in some quality of life dimensions can be identified. Most patients describe an improvement in their quality of life following the initiation of HEN that needs to be confirmed by a prospective study.     

Determinants of quality of life in home parenteral nutrition

PURPOSE OF REVIEW: To highlight the most important and salient articles regarding home parenteral nutrition and quality of life published within the last 3 years. RECENT FINDINGS: In recent years, quality of life research in home parenteral nutrition has highlighted the need for a therapy-specific validated questionnaire. Several papers suggest a greater psychological input is required to better understand and evaluate this patient population. Issues surrounding the use of home parenteral nutrition in malignancy have arisen, prompting discussion on ideal timing and candidacy for home parenteral nutrition. Intestinal transplantation is evolving and improving, making it a possible alternative to home parenteral nutrition. Earlier referral is suggested as late referral can result in poorer outcome. SUMMARY: Home parenteral nutrition is a life-sustaining therapy for individuals with intestinal failure. There is now a relatively large amount of research into the quality of life in this population, but more focused measurements (in the form of validated therapy-specific questionnaires) are required to answer questions relating to cancer and intestinal transplantation.     

Preparing patients for home parenteral nutrition

A comprehensive, interdisciplinary program for patients requiring home parenteral nutrition (HPN) is described. This program begins with an initial patient assessment, which includes medical prerequisites and evaluation of patient motivation and learning abilities, family supports, emotional status, and individual life-styles. The teaching phase involves instructing the patient in the tasks necessary to self-administer parenteral nutrition at home. Problems that can arise are presented, and patient self-monitoring for adverse reactions and problem solving is emphasized. Outpatient follow-up is provided by the interdisciplinary Nutrition Support Service in a clinic setting. Specific components of these visits in relation to physical and emotional adjustment to HPN are discussed. The Nutrition Support Service recognizes a long-term commitment to patients receiving HPN, and members of the team are available to assist patients when problems occur.     

Mortality in patients on home parenteral nutrition

Fifty out of 228 patients recorded on the U.K. Home Parenteral Nutrition Register have died. The earliest to die was at 10 days following the commencement of home parenteral nutrition (HPN), and the longest to die was after 5 1/2 years. Half of the patients who died, did so within 6 months of commencing HPN. Sixty % died of their underlying disease. Most patients with scleroderma or an underlying malignancy are dead within a year of commencing HPN. In contrast, patients with Crohn's disease or the short bowel syndrome due to volvulus do well. In only 14 patients was death attributable to the administration of HPN. In this group the main causes were septicemia, SVC thrombosis, and hepatic failure. Our study suggests that HPN should be used in patients with malignancy and scleroderma only in exceptional circumstances and that further work is necessary for the prevention of SVC thrombosis.     

Does long-term home parenteral nutrition in adult patients cause chronic liver disease?

Sixty patients with gut failure were treated with home parenteral nutrition for 2000 patient months. Fifty-one of these 60 patients had either no abnormalities or mild and transient elevations of their liver chemistries and did not have liver biopsies. Nine (15%) of 60 patients had abnormalities of liver tests that persisted from 8 to 95 months (median, 18 months) which prompted one or more liver biopsies per patient. Three patients had prolonged jaundice, one died of hepatic encephalopathy, and another with protracted intrahepatic cholestasis died following a biliary tract exploration. A third patient remains ill with signs and symptoms of chronic liver disease. Steatohepatitis was found in eight of the nine patients and was characterized by centrilobular and midzonal microvesicular and macrovesicular fatty changes with fat cysts, focal necrosis, and mixed inflammatory infiltrates. Centrilobular fibrosis was present in three patients and evidence of nodular regeneration in one. In the three patients demonstrating cholestasis, bile pigment was identified both in hepatocytes and canaliculi. Ceroid pigment in Kupffer cells was a consistent finding and much more severe than expected from the mildness of the hepatitis. Persistent abnormalities of liver chemistries in nine patients and progressive liver disease while receiving home parenteral nutrition in three patients are quite worrisome and suggest that home parenteral nutrition-associated steatohepatitis with or without cholestasis may progress to chronic liver disease.     

Outcome and quality of life in paediatric home parenteral nutrition

In this review the current status of home parenteral nutrition is analysed, with respect to the predictability of weaning from nutritional support and the risk of developing major complications associated with the technique, the loss of vascular access and liver disease. These two complications were evaluated because they represent the more important indication for intestinal transplantation, the availability of which has changed the perspectives of patients and of physicians. Analysis of outcomes from the largest series allows the identification of patients who could be weaned from parenteral nutrition. Important prognostic factors in patients affected by short bowel syndrome are the length and type of the remnant and the time to tolerate enteral feeding. The main complications of therapy are sepsis, thrombosis, nutrient imbalances and liver disease. Sepsis and thrombosis could lead to line replacement and the loss of vascular access. Sepsis no longer represents a major cause of death, but it is a frequent complication. In some patients, it is difficult to assess the risk factors for sepsis, which is possibly related to a poorer outcome. The care of gut failure appears to be the best preventative measure for the occurrence of cholestatic liver disease, but further studies are needed to define the eventual role of lipid emulsion and of specific nutrient deficiency. The quality of life still remains to be studied: because home parenteral nutrition in children has a longer duration, its analysis is mandatory.     

Impact of infusion frequency on quality of life in patients receiving home parenteral nutrition

Home parenteral nutrition (HPN) may be needed as a long-term therapy for patients with chronic intestinal failure whose clinical condition does not allow complete weaning of the parenteral nutrition (PN) solution. HPN is a time-consuming and clinically complex therapy and can negatively affect quality of life (QOL). The level of dependency on HPN, specifically, infusion frequency, has been proposed as a factor that may have an effect on QOL in patients receiving HPN. The primary aim of this qualitative review is to identify the impact of HPN frequency (days per week of HPN infusion) on QOL measurements in adult patients receiving HPN. A comprehensive literature search was completed in PubMed and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases. Primary clinical research studies were included if they were conducted in adult patients receiving HPN and included the assessment of the associations between the frequency of HPN infusion and QOL measurements. Six articles ultimately met the criteria for this review. There was variability among the studies, including use of different tools to measure QOL. However, all six studies suggest that a reduction in HPN frequency may be associated with an improvement in QOL. Whenever patients’ clinical situation allows, a reduction in HPN frequency should be considered to improve QOL in patients receiving HPN.     

Selenium status in patients receiving home parenteral nutrition

Selenium (Se) status was evaluated in patients with intestinal failure requiring home parenteral nutrition (HPN). Ninety-two percent of patients (11 of 12) studied just prior to starting HPN had low serum Se values, and the mean value was 42 ng/ml, significantly less than mean values in disease controls with Crohn's disease not on HPN (76 ng/ml) and healthy controls (88 ng/ml). Eighty-five percent of patients (22 of 26) already on HPN for 2 to 109 months when studied had low serum Se levels (mean 38.4 ng/ml). The mean 24-hr urinary Se values were 3.7 micrograms in patients on HPN who did not have Crohn's disease, 10.9 micrograms in HPN patients with Crohn's, and 17.9 micrograms in healthy controls. In patients with Crohn's disease on HPN, a significant direct correlation existed between serum Se and the activity of whole blood glutathione peroxidase, a selenoprotein ; and a significant inverse correlation was found between serum Se and months of HPN. This study confirms that Se deficiency is very common in patients before starting and during HPN. These data and recent reports of cardiomyopathies associated with Se deficiencies in patients on HPN increase the importance of proper Se replacement and maintenance.     

Serum lipoproteins in home total parenteral nutrition patients

Patients maintained in our home total parenteral nutrition (HTPN) program receive very small amounts of cholesterol in their solutions. Because of the severe intestinal insufficiency which is characteristic of this group, they do not absorb significant amounts of cholesterol or bile salts from their intestines. We investigated the serum lipoproteins in nine patients maintained on HTPN for 36 +/- 4 (mean +/- SEM) months. Fat emulsions were given twice a week as a source of essential fatty acids. Mean serum cholesterol 110 +/- 6.5 mg/dl, LDL-cholesterol 75 +/- 6 mg/dl, and HDL-cholesterol 29 +/- 1 mg/dl, were at or below the 5th percentile compared with age- and sex-matched Lipid Research Clinic controls. HDL-cholesterol to serum cholesterol ratio was in the normal range (0.25 +/- 0.30). The mean serum cholesterol did not rise, but the mean serum triglyceride rose significantly from 72 +/- 4 to 104 +/- 16 mg/dl (p less than 0.05) immediately after completion of TPN infusions with fat emulsions. There was a negative correlation between the length of HTPN therapy and the total serum cholesterol (r = 0.43, p less than 0.05). Thus, HTPN patients have markedly depressed concentrations of total serum cholesterol, LDL-cholesterol, and HDL-cholesterol, but the ratio of HDL cholesterol to total serum cholesterol is in the normal range.     

Vitamin D deficiency in patients receiving home parenteral nutrition

Background: In addition to its role in bone metabolism, vitamin D has important immunomodulatory and antineoplastic effects. Patients on home parenteral nutrition (HPN) receive most of their vitamin D from intravenous (IV) supplementation. Vitamin D deficiency is common in the general population, and the adequacy of vitamin D supplementation in HPN patients is unclear. The purpose of this study is to determine the vitamin D status of patients on HPN. Methods: Consecutive patients seen in a regional home nutrition program had their oral and IV vitamin D intakes determined. Plasma 25‐hydroxyvitamin D levels were measured in all patients. Intake of calcium, magnesium, and phosphate were also determined. Results: The mean 25‐hydroxyvitamin D level in 22 patients receiving HPN for a mean of 33.5 months (range, 1–177) was 42 nmol/L. Vitamin D deficiency was present in 15 (68%) patients and vitamin D insufficiency in 6 (27%) patients. The mean dietary vitamin D intake was 79.5 IU per day, while the mean IV supplementation was 166 IU per day. Conclusions: In this study of a regional Canadian HPN program, there was a high prevalence of vitamin D deficiency/insufficiency affecting virtually all patients. All patients receiving HPN should be supplemented with vitamin D and have their 25‐hydroxyvitamin D levels monitored. Further studies are required to determine optimal methods and dosing of vitamin D replacement using oral supplements or ultraviolet light therapy.