No / Aim The aim of this review is to summarise the literature relating to patients’ experiences with home parenteral nutrition (HPN). Method This literature review is based on searches of CINAHL, PubMed, Web of Knowledge and Web of Science for articles published between 1970 and 2013. Additional studies were included from Department of Health publications, NICE clinical guidance, UK patient support group with interests in HPN or intestinal failure (IF). Results Patients with severe IF have been successfully treated with HPN since the 1970s. Early published studies evaluated clinical outcomes such as catheter-related infections, metabolic complications, thrombosis of the catheterised vein and liver impairment. Since the 1980s questionnaire studies were used to evaluate the quality of life (QoL) of patients treated with HPN. These early studies used QoL assessment tools which were not validated for patients treated with HPN. Internationally, there were published qualitative research studies which explored the experiences of patients treated with HPN. Conclusions The long-term outcome of patients treated with HPN continues to attract research interest. The review of the literature did not identify any published qualitative studies on the experiences of patients treated with HPN in the UK, suggesting a gap in the research. The UK National Health Service advocates a patient-centred approach for service design and delivery in primary and secondary care. This literature review has highlighted opportunities for qualitative research into the experiences of patients living with HPN to achieve better understanding and awareness of the rehabilitation of these patients

Yes / & aims Parenteral nutrition (PN) provides nourishment and hydration as an intravenous infusion to patients with intestinal failure (IF). The aim of the study is to generate theory that explains the experiences of adult patients living with home parenteral nutrition (HPN) and complex medication regimens. Methods A grounded theory methodology was used to explore the experiences of twelve patients receiving HPN. A semi-structured interview was conducted and recorded in each participant's home setting. Each interview was transcribed verbatim. The simultaneous process of data collection and analysis was followed reflecting the principles of the constant comparative approach. Results A total of 15 patients gave written consent, with 12 of them agreeing to be interviewed. All the participants had previously undergone surgery as a result of chronic ill health or sudden illness. Analysis revealed two core categories: stoma and HPN, and these were supported by the subcategories: maintaining stoma output, access to toilets, managing dietary changes, maintaining the HPN infusion routine, access to technical help to set up an HPN infusion, mobility with HPN equipment and general health changes. The strategy of living with loss was demonstrated by all the participants, and this was supported by the action strategies of maintaining daily activities and social interactions. Conclusions This study generates new understanding and insight into the views and experiences of patients receiving HPN in the UK. The findings from these participants have been shown to resonate with the Kubler-Ross Model [1] of the five stages of grief. The theory of living with loss was generated by the use of a grounded theory methodology. This small scale exploratory study reveals opportunities for improvements in practice to be considered by the nutrition support team (NST) and other healthcare professionals involved in the patient's hospital stay prior to discharge on HPN.

Home parenteral nutrition is a treatment enabling the patients with intestinal failure to live their lifes in their home environment. The possibility to commence and practise home parenteral nutrition requires not only a medical and pharmaceutical team, but also paramedical staff, which plays a signifiant part mainly in education of the patient and his close relatives. The study's aim was to characterize the patients involved in the home parenteral nutrition programme (HPN) and catheters used for this purpose and as well to analyze complication rate of the long term catheters related to their use and subsequent care. Into the retrospective quantitative study were included patiens treated with home parenteral nutrition since january 2009 to september 2015 within one nutrition care center. Data collection was realized by research in medical documentation. Altogether 135 patients were included in the study (93 female and 42 male), who have hade 227 catheters inserted in total (114 portcatheters, 73 Broviac catheters and 40 PICC) with 86 187 catheter days. The most frequent basic disease was cancer (36%) and the most prevalent indication to HPN was a short bowel syndrome (50%). Overall complication rate was 2,12/1000 catheter days (1,62 catheter sepsis, identically local infections and thrombotic...

(EN) Home parenteral nutrition (DPV) has become a routine part of patients care whose oral intake is reduced or completely eliminated. An integral part of the application of DPV is also the permanent or temporary need for functioning vascular access. Catheter complications negatively affect the quality of life, morbidity and in case of catheter sepsis the patient mortality. In addition it also brings increased costs for therapy and the need for patients re-hospitalization. The main objective of our study is to analyze catheter-related complications and to determine whether use of catheter plugs like TauroLock and TauroLock Hep and Tegaderm CHG antimicrobial dressing affect the incidence of catheter complications with DPV, and whether the incidence of complications is affected by a person who treated the catheter. The secondary objective is to characterize patients with served DPV and types of catheter used for this purpose.The method chosen is a retrospective observational cohort study. The study contains 52 patients with 72 catheters (39 Broviac, 18 PICC and 15 ports). The monitored number of catheter- days in total was 33,875. We conclude that the use TauroLock Hep is effective in the prevention of catheter complications and significantly reduces the overall incidence of all complications (p =...

This diploma thesis deals with home parenteral nutrition in the day and night regime and its effect on patients. Parenteral nutrition is usually administered at night so that patients can do normal daily activities and so that nutrition administered in this way has the least impact on their lives. Parenteral nutrition is not a physiological route of nutrient administration and it is not natural for the human body to process nutrients at night. The first part of the theoretical work presents parenteral nutrition and its composition, indications, contraindications and complications. The next part of the thesis describes home parenteral nutrition and its organisation which is necessary for this form of nutritional support to be implemented. It is necessary to monitor many laboratory values on parenteral nutrition, the theoretical part specifically mentions cholesterol, triacylglycerols, glycemia or liver function tests. One of the important parts is the chapter about circadian rhythms, hormones and metabolic changes in energy intake at night. Qualitative research was chosen for this work, which involved 17 patients on home parenteral nutrition. These patients were getting their nutrition during the night. Their laboratory values such as liver function tests, glycaemia and blood fats was evaluated and...

This diploma thesis deals with the issue of life quality of patients taking home parenteral nutrition. Its intention is to present the achieved life quality scores in the individual domains of physical and mental health in comparison with general population and to point out the differences in what dimensions the life quality of these patients is particularly affected. The theoretical section describes the present situation of the issue of home parenteral nutrition in the CR and the system of the care about the patients. The chapter about indications and contraindications to HPN is elaborated in more detail. The possibilities of the long-term vascular accesses, the care about them are also mentioned here, and particularly the role of a nurse in patient education in transferring parenteral nutrition to the domestic environment. The problems with long-term parenteral nutrition resulting from mechanic, metabolic and septic complications are also outlined. Parenteral nutrition failure is the most serious problem, which is why a chapter on small intestine transplantation as the last resort to save a patient with combined failure of intestine and nutrition is included. The second part of the theoretical section describes the life quality. I wanted to define the nature of this unambiguously graspable a term, determinants affecting life quality are also mentioned here. The possibilities of life quality measurement and assessment and particularly the follow-up use of the obtained data are mostly summarized here. Goals and hypotheses: Two goals were set to meet the main purpose of the thesis: Goal 1: To find whether the life quality of patients on HPN differs from that of the general public. Goal 2: To find the spheres in which the life quality of patients on HPN is mostly affected. A zero hypothesis was set to achieve the goals: Life quality of patients on HPN does not differ from that of the general public. There is no statistically significant difference between men and women. Eight alternative hypotheses to each life quality domain followed: H1: Patients on HPN show lower life quality score compared to the general public in the sphere of physical functions. H2: Patients on HPN show lower life quality score compared to the general public in the sphere of physical roles' limitation. H3: Patients on HPN show lower life quality score compared to the general public in the sphere of emotional roles' limitation. H4: Patients on HPN show lower life quality score compared to the general public in the sphere of emotional limitation of social functions. H5: Patients on HPN show lower life quality score compared to the general public in the sphere of pain. H6: Patients on HPN show lower life quality score compared to the general public in the sphere of general mental health. H7: Patients on HPN show lower life quality score compared to the general public in the sphere of vitality. H8: Patients on HPN show lower life quality score compared to the general public in the sphere of general health perception. A quantitative method of collected data analysis was applied to the research implementation. The research was based on the standardized questionnaire SF-36 supplemented with questions dealing with identification of respondents, time consumption of their treatment and their consequent satisfaction at the beginning. The questionnaire was distributed to patients using home parenteral nutrition in specialized nutrition centres of the Thomayer Faculty Hospital in Prague, Faculty hospitals in Brno and Hradec Králové and also by electronic means through the website of the citizen association Life without Intestine. The obtained data were statistically evaluated and processed into illustrative tables and graphs.Detailed mapping of the problems of life quality and highlighting of the neglected spheres of life quality of patients using HPN are the outputs of the thesis. The results will be presented to the members of the workgroup for HPN within their.

A stationary or portable infusion pump can be used to administer home parenteral nutrition (HPN). The stationary pump (SP) must be fasten to the infusion stand, so patients administer infusions in night mode to maintain their quality of life and mobility in the daytime. However, administering the HPN at nighttime can cause complications. Conversely, the portable pump (PP) does not have to be fasten to the infusion stand and the infusions can be administered in day mode during activities, as the PP can be placed in a special backpack. The aim of this diploma thesis is to evaluate the administration of HPN in day mode in patients with a PP and further to evaluate and compare the results of quality of life and liver function tests results in patients with a PP and a SP. HPN patients with a PP and a SP completed the HPN-QOL questionnaire in the nutritional clinic at the 4th internal clinic of the General University Hospital in Prague during outpatient visits. In addition to that, patients with a PP completed a questionnaire focused on the administration of HPN in day mode. Liver function tests results (total bilirubin, ALT, AST, GGT, ALP, cholinesterase and albumin) were obtained from patients' medical records. A total of 14 respondents with a PP and 14 respondents with a SP were included in the...

Introduction: Medical advances have resulted in reduced mortality of pediatric patients with Intestinal Failure. Consequently, more patients go home on parenteral nutrition (PN) for extended durations. This time-consuming and complicated therapy necessitates persistent vigilance in monitoring and response to potential life-threatening side effects. These issues may impact quality of life (QOL) for patients, caregivers and families. Methods: This observational, cross-sectional, mixed-methods analysis of multidimensional QOL used a quantitative battery assessment and a qualitative focus group. Questionnaire results were compared to published norms, published small bowel transplant (SBTx), and institutional SBTx patients. Results: Home PN proxy assessments scored children lower than published norms but similar to SBTx. The child self-reports were similar to both normative and SBTx populations, except lower general and overall health. Generic questionnaires did not capture disease-specific issues. Conclusion: QOL is compromised in children on home PN and caregivers compared to norms but is similar to SBTx.

Introduction: Medical advances have resulted in reduced mortality of pediatric patients with Intestinal Failure. Consequently, more patients go home on parenteral nutrition (PN) for extended durations. This time-consuming and complicated therapy necessitates persistent vigilance in monitoring and response to potential life-threatening side effects. These issues may impact quality of life (QOL) for patients, caregivers and families. Methods: This observational, cross-sectional, mixed-methods analysis of multidimensional QOL used a quantitative battery assessment and a qualitative focus group. Questionnaire results were compared to published norms, published small bowel transplant (SBTx), and institutional SBTx patients. Results: Home PN proxy assessments scored children lower than published norms but similar to SBTx. The child self-reports were similar to both normative and SBTx populations, except lower general and overall health. Generic questionnaires did not capture disease-specific issues. Conclusion: QOL is compromised in children on home PN and caregivers compared to norms but is similar to SBTx.

SMOFLipid® is a commonly used fat emulsion for parenteral nutrition. We investigated how enrichment of SMOFLipid® with n-3 polyunsaturated fatty acids (PUFA) in a form of second fat emulsion, Omegaven® , changes fatty acid composition of total plasma phospholipids and erythrocyte phospholipids, cytokine concentrations in serum and in supernatant from in vitro whole blood culture stimulated with lipopolasaccharide (LPS) and we evaluated also changes in oxido- reductive balance. Eight patients on long-term home parenteral nutrition recieved both emulsions, SMOFLipid® (6 weeks) and SMOFLipid® +Omegaven® (4 weeks), one by one. We observed no significant differences in common laboratory and clinical parameters between these two types of diet. Enrichment of SMOFLipid® with Omegaven® led to an increase in eicosapentaenoic (EPA) and docosahexaenoic acid (DHA) in total plasma phospholipids and there was also an increse in proportion of EPA in erythrocyte phospholipids, while proportion of DHA remained unchanged. These changes were in both phospholipids of plasma and erythrocyte compensated for a decrease in proportion of linoleic and arachidonic acid (n-6 PUFA). There were elevated IL-6 and TNF-α serum concentrations in patients after both diets. There was a decrease in IL-6 production by 36% with SMOFLipid®...