Outcome Indicators for Home Parenteral Nutrition Care: Point of View From Adult Patients With Benign Disease.

Patients receiving home parenteral nutrition (HPN) deserve a high-quality and patient-centered care. Patient-centered care can be delivered only if the patient's priorities and concerns are known. Therefore, the aim is to identify the top 3 most important outcome indicators according to patients' perspectives and the differences between several centers, HPN regimen, and HPN experience. A questionnaire, based on previously developed outcome indicators, was translated into the mother tongue using forward-backward translation and distributed to adult HPN patients with benign disease in March 2013. To identify differences, a Kruskal-Wallis or Mann-Whitney test was performed with GraphPad Prism (significance level <.05) when applicable. Nine centers over 8 countries (300 patients) participated. The top 3 outcome indicators for patients were (1) incidence of catheter-related infection (CRI), (2) survival, and (3) quality of life (QoL). Between the participating centers, significant differences on rating were found for 5 outcome indicators (catheter obstruction, .015; weight, .002; energy, .010; fear, <.001; and independence, .010). The independence outcome indicator (.050) was considered less important for experienced (>2 years HPN) vs less experienced patients. For this outcome indicator, patients' view also differed significantly based on number of HPN days per week (.0103). A cohort of HPN patients identified incidence of CRI, survival, and QoL as the most important outcome indicators for their care; however, there were significant differences between the participating centers. For one outcome indicator (independence), there were significant differences based on experience and regimen.

Dreesen M ，Pironi L ，Wanten G ，Szczepanek K ，Foulon V ，Willems L ，Gillanders L ，Joly F ，Cuerda C ，Van Gossum A ... -  《-》

Identifying patient-centered quality indicators for the care of adult home parenteral nutrition (HPN) patients.

Previous qualitative research, aimed at eliciting the experiences and views of home parenteral nutrition (HPN) patients in daily life, revealed little information on HPN care. However, to perform patient-centered care, it is important to understand what "quality of care" means for adult HPN patients. Therefore, the aim of this study was to identify quality indicators through patients' perspectives. In-depth, face-to-face, semistructured interviews were conducted between June and November 2011 with adult patients who recently started HPN. Patients were selected by purposive sampling. Interviews were audio recorded, transcribed verbatim, and analyzed using a framework approach. Nvivo 9.0 software was used for managing transcripts. Twelve adult patients (7F/5M) were interviewed. At the time of the interview, median HPN experience was 59 days. Two structure, 31 process, and 9 outcome indicators were identified. The majority of process indicators are related to the home nurse, indicating the important role of these healthcare professionals in HPN care. In addition, all interviewees reported communication as an essential aspect of the complex care pathway. The identified outcome indicators are comparable with the indicators that were previously developed by an expert panel. For example, improvement in quality of life during HPN treatment and incidence of catheter-related infections were identified by both groups. Interviews with HPN patients revealed an interesting set of indicators that can be used to perform, evaluate, or improve current HPN care and are a starting point for a more patient-centered approach.

Dreesen M ，Foulon V ，Vanhaecht K ，De Pourcq L ，Hiele M ，Willems L ... -  《-》

Development of quality of care interventions for adult patients on home parenteral nutrition (HPN) with a benign underlying disease using a two-round Delphi approach.

HPN patients with benign diseases deserve professional care as they have to deal with complex techniques and risk potentially dangerous complications. The aim was to highlight main outcome quality indicators and to develop a set of key interventions to direct multidisciplinary teams in providing qualitative care. A two-round Delphi approach was used to build consensus on the most important outcome indicators and on 59 interventions identified in existing guidelines on HPN. Comments and interventions newly identified in the first round were co-evaluated in the second round. 29 experts from 9 countries completed the two-round Delphi approach. The outcome indicators rated as the most important are 1) incidence of catheter-related infections, 2) incidence of readmission and quality of life (shared second place) and 3) incidence of dehydration. Sixty eight of a total of 89 interventions were considered as important for the quality of care, of which 46 are based on published guidelines and 22 were newly suggested by the Delphi panel. Using a two-round Delphi approach, consensus was reached for the majority of interventions concerning HPN patients with benign diseases. This set of 68 interventions could be of use as a starting point for quality-improvement programs.

Dreesen M ，Foulon V ，Vanhaecht K ，Hiele M ，De Pourcq L ，Pironi L ，Van Gossum A ，Wanten G ，Baxter JP ，Joly F ，Cuerda C ，Willems L ... -  《-》

Voiceover Interactive PowerPoint Catheter Care Education for Home Parenteral Nutrition.

In home infusions via tunneled catheter/peripherally inserted central catheter (TC/PICC) the risk of catheter-related bloodstream infection (CRBSI) and complications contribute to rehospitalization and costs. It is unknown if voiceover interactive PowerPoint (VOIPP) via digital video disc education improves clinical outcomes. In a quaternary care medical center and using a randomized, controlled, 2-group design, hospitalized patients with TC/PICC received usual care education or usual care (UC) plus VOIPP education prehospital discharge. A multiple-choice 6-item knowledge questionnaire was administered preeducation, immediately posteducation, and 7-10 days postdischarge. At 90 days, patients were assessed for CRBSI incidence rates per 1000 catheter-days, rehospitalization, CRBSI-related hospitalization, non-CRBSI complications and patient calls to the home parenteral nutrition (HPN) clinicians. Analysis of variance, Pearson χ(2), and Kruskal-Wallis test were used to compare results between groups. Of 51 patients (UC, n = 27; UC+VOIPP, n = 24), mean ± SD age was 46.3 ± 14.3 years, 68.6% were female, HPN duration was 2.2 ± 1.01 months, and time to postdischarge test completion was 11.5 ± 5.2 days. There were no baseline differences between groups. Between-group knowledge and changes in knowledge were similar at preeducation, immediate posteducation, and postdischarge (P = .88, 0.30, and 0.37, respectively). There were no differences in CRBSI incidence, rehospitalization, CRBSI-related rehospitalization rates, and non-CRBSI complications between groups. The UC+VOIPP group had more patient calls than did the UC group (21.8 vs 7.7 calls/1000 catheter-days, P < .001). Recorded education led to more patient calls to the HPN clinicians; however, there were no differences between groups in other outcomes.

Emery D ，Pearson A ，Lopez R ，Hamilton C ，Albert NM ... -  《-》

Parenteral nutrition mixtures prepared at home by trained parents are as safe as pharmacy-made mixtures: a 3-y prospective study.

Home parenteral nutrition (HPN) prevents malnutrition in children with intestinal failure improving chances for the best possible physical development and quality of life. For organizational reasons, in Poland the majority of children on HPN receive nutrition mixtures prepared at home by their parents. The aim of this study was to evaluate whether this method influences the frequency of catheter-related bloodstream infections (CRBSIs). The aim of this prospective study was to assess the incidence of CRBSIs from January 2008 to December 2010 in 181 children on HPN and to compare the incidence in two subgroups of these children: group Ph (pharmacy) consisting of 43 patients receiving mixtures prepared in the hospital pharmacy weekly, and group H (home)-138 patients receiving nutrition mixtures prepared daily at home by their caregivers. Central venous CRBSIs were diagnosed by the presence of clinical signs (such as fever, chills, malaise, vomiting) associated with positive blood culture from the central catheter. From 2008 to 2010 parenteral nutrition was administrated during 128 905 catheter-days in 181 patients, and CRBSIs occurred 129 times (1 episode per 1000 catheter-days) in 65 patients. There were 42 bloodstream infections in group Ph during 29 225 catheter-days (i.e., 1.43 per 1000 catheter-days), whereas 87 bloodstream infections occurred in group H during 100 775 catheter-days (i.e., 0.86 per 1000 catheter-days; P = 0.0516). Preparing parenteral nutrition mixtures at home by trained parents is a safe method of HPN with a slightly (however insignificantly) lower incidence of CRBSIs compared with hospital pharmacy-prepared parenteral nutrition mixtures.

Friedman-Gruszczyńska J ，Ossolińska M ，Popińska K ，Książyk JB ... -  《-》