Search

Contains fulltext : 205187.pdf (publisher's version ) (Closed access), BACKGROUND & AIMS: Home parenteral nutrition-quality of life (HPN-QOL((c))) is a self-assessment tool for the measurement of QOL in patients on HPN. The aims of this study were: to re-assess the basic psychometric properties of the HPN-QOL((c)) in a multinational sample of adult patients; to provide a description of QOL dimensions by short and long HPN treatment duration; to explore clinical factors potentially associated to QOL scores. METHODS: Patients (n = 699) from 14 countries completed the HPN-QOL((c)). The questionnaires were analysed to evaluate data completeness, convergent/discriminant validity and internal-consistency reliability. The association of overall QOL and HPN treatment duration as well as other clinical factors were investigated using multivariable linear regression models. RESULTS: The analysis of the multitrait-scaling and internal consistency indicates a good fit with the questionnaire structure for most items. Item discriminant validity correlation was satisfactory and psychometric evaluation of the HPN-QOL((c)) in the different English, French and Italian language patient sub-groups confirmed psychometric equivalence of the three questionnaire versions. The results of the multivariable linear regression showed that QOL scores were significantly associated with HPN duration (better in long-term), underlying disease (better in Crohn's disease and mesenteric ischaemia) and living status (worse in living alone) and, after adjusting for the other factors, with the number of days of HPN infusion per week. CONCLUSIONS: The HPN-QOL((c)), is a valid tool for measurement of QOL in patients on HPN, to be used in the clinical practice as well as in research.

Item does not contain fulltext, BACKGROUND & AIMS: Long-term home parenteral nutrition (HPN) may cause distress and negatively affect quality of life (QoL). The HPN version of the Distress Thermometer and Problem List (DT/PL) was developed to evaluate distress during HPN. This study validates the DT/PL, examines referral wish for additional care, assesses opinions on the DT/PL, and studies risk factors for distress and referral wish. METHODS: Dutch and Scottish patients completed questions on socio-demographic and HPN-related general characteristics, the DT/PL, referral wish, the Hospital Anxiety and Depression Scale, and opinions on the DT. RESULTS: The HPN version of the DT/PL seemed valid and the PL sufficiently reliable. Cut-off score appeared to be 6. Consequently, 45% of patients were diagnosed as clinically distressed. Fifty-three percent had a referral wish. Emotional and physical problems were most strongly associated with distress. Not being able to work related to elevated distress. Female gender and co-morbidity related to referral wish. Opinions on the DT were generally positive. CONCLUSION: The DT/PL appears to be a good instrument to regularly gain insight into distress and referral wish in HPN patients. Use of the DT/PL facilitates support to patients who most need and want it, thus improving quality of care and QoL.

Item does not contain fulltext, BACKGROUND & AIMS: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.