An international study of the quality of life of adult patients treated with home parenteral nutrition.

BACKGROUND & AIMS: Home parenteral nutrition-quality of life (HPN-QOL©) 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© 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©. 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© 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©, is a valid tool for measurement of QOL in patients on HPN, to be used in the clinical practice as well as in research.

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.

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.

Home parenteral nutrition in Scotland: frequency of monitoring, adequacy of review and consequence for complication rates.

BACKGROUND AND AIMS: Home parenteral nutrition (HPN) has been a major advance in the management of patients with gastrointestinal failure. It demands regular monitoring to ensure optimal intake, assess treatment response, and minimize complications. The Scottish Home Parenteral Nutrition Managed Clinical Network (MCN) produced a guideline advising three-monthly monitoring of biochemistry, micronutrients, vitamins, weight, and anthropometry. This study assesses the frequency and adequacy of monitoring of these complex patients and investigates any effect of this on complication rate. METHODS: All patients receiving HPN funded by the National Health Service in Scotland are known to the MCN via the National Contract for provision of HPN. Data are collected in an MS Access database; 2006 data is extracted. RESULTS: There were 141 HPN clinic assessments for 53 patients. Sixteen (30%) were seen every 100 d as recommended by the guideline. Sixty percent of reviews were within 100 d of the previous appointment. Duration of HPN treatment inversely correlated with frequency of review. Bloods were checked at 93% of reviews, weight at 86%, anthropometry at 24%, and vitamins and micronutrients measurement at 62% of clinics. No difference in complication rates was found between those reviewed within the recommended time periods and those reviewed less often. CONCLUSIONS: Less than one-third of patients met the current recommended review frequency. Routine bloods and weight measurements were good, micronutrients less so; anthropometry is poorly monitored. Complication rates were not increased in HPN patients reviewed less often.

The clinical and psychometric validation of a questionnaire to assess the quality of life of adult patients treated with long-term parenteral nutrition.

BACKGROUND: Home parenteral nutrition (HPN) is an established treatment for the management of patients with chronic intestinal failure. No quality-of-life assessment tools have been developed and validated specifically for this patient population, and previous studies have used generic instruments or techniques not validated in HPN. The assessment of quality of life (QOL) should produce clinically relevant data reflecting patients' issues. The HPN-QOL was designed to assess the QOL of HPN patients. The purpose of this study was to test the hypothesized scale structure of the questionnaire with regard to reliability and validity in a sample of patients. METHODS: A provisional questionnaire was prepared following recognized guidelines and then subjected to field testing. The questionnaire was administered to 100 adult patients receiving HPN. Psychometric tests examined the reliability and validity of the questionnaire, and patients' debriefing comments were analyzed. RESULTS: The provisional questionnaire was adapted using evidence from quantitative and qualitative analysis. Multitrait scaling analysis and face validity refined the questionnaire to 48 items. Compliance rates were high, and the questionnaire was well accepted. CONCLUSIONS: A method of objectively assessing the QOL of patients treated with HPN has been developed. The HPN-QOL has been rigorously prepared and demonstrates psychometric and clinical validity to assess the QOL of long-term HPN patients.

A review of the quality of life of adult patients treated with long-term parenteral nutrition.

BACKGROUND AND AIMS: Some previous studies have assessed quality of life (QoL) in home parenteral nutrition (HPN) using generic instruments or non-validated questionnaires. A systematic search of electronic databases and relevant publications identified 50 publications. This paper reviews the QoL of patients receiving HPN and discusses the factors affecting QoL. RESULTS: There is little available data about the QoL of HPN patients. Both HPN and the underlying disease may affect QoL, and an evaluation of QoL requires the separation of these two issues. CONCLUSIONS: There is a need for a standardised, scientifically validated, treatment-specific instrument to measure QoL in this population. The use of a treatment-specific QoL questionnaire should become part of the routine clinical management of HPN patients.

Organization of managed clinical networking for home parenteral nutrition.

PURPOSE OF REVIEW: Home parenteral nutrition (HPN) is an established treatment for intestinal failure, and organization of HPN is variable throughout the UK and Europe. Managed clinical networking is the single most important feature of the UK National Health Service strategy for acute services in Scotland and has the potential to improve the management of HPN patients. This review addresses the role of managed clinical networking in HPN and compares outcome data between centres. RECENT FINDINGS: The Scottish HPN Managed Clinical Network has published the main body of the current literature supporting the concept of managed clinical networking in this context. The Network is responsible for the organization and quality assurance of HPN provision in Scotland, and has been established for 5 years. It has captured significant patient data for the purpose of clinical audit and illustrates that this is an effective model for the management of this patient population. SUMMARY: This review provides advice for other areas wishing to improve equity of access, and to smooth the patient journey between primary, secondary and tertiary health care in the context of artificial nutrition support.

A review of the instruments used to assess the quality of life of adult patients with chronic intestinal failure receiving parenteral nutrition at home.

Home parenteral nutrition is an established method of supporting patients with intestinal failure, but this treatment may be life long and imposes severe restrictions on daily life. Impact on quality of life is an important outcome when considering the management of home parenteral nutrition patients. This paper reviews studies in which the quality of life of patients receiving home parenteral nutrition has been assessed. A systematic search of electronic databases and relevant publications was undertaken to identify generic or treatment-specific questionnaires used with home parenteral nutrition patients. Many of the thirty-four reports discovered were small studies. Nineteen used non-specific generic instruments, eight used non-validated questionnaires, four used a combination of both, and three did not use any formal tool. Few systematic patterns emerged. There are few available data on the quality of life of home parenteral nutrition patients, and there is a need for standardised, scientifically validated, treatment-specific instruments to measure quality of life in this population.

Scottish Home Parenteral Nutrition Managed Clinical Network: coordination and standards.

Home parenteral nutrition is required by patients with intestinal disease such that they are unable to maintain nutritional status or fluid volume without this treatment. A Managed Clinical Network has been established in Scotland. The aims of this multi-professional group are to ensure equity of access and that patients are managed according to nationally-agreed evidence-based procedures and protocols. The Clinical Standards Board for Scotland has provided support in preparing a quality-assurance framework to which the network must adhere.