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.

Development and validation of the disease-specific Short Bowel Syndrome-Quality of Life (SBS-QoL™) scale.

Background & Aims: Subjects with short bowel syndrome (SBS) have impaired quality of life (QoL). No disease-specific instrument has been available to measure treatment-induced changes in QoL over time. Therefore, the aim was to develop and validate an SBS-specific QoL scale.

Screening for psychosocial distress in patients with long-term home parenteral nutrition.

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.

Assessment of quality of life on home parenteral nutrition and after intestinal transplantation using treatment-specific questionnaires.

In order to investigate the quality of life on home parenteral nutrition and after intestinal transplantation using comparable questionnaires, the treatment-specific quality of life questionnaire for adult patients on home parenteral nutrition was adapted for intestinal transplant recipients. Both instruments were composed of 8 functional scales, 9 symptom scales, 3 global health status/quality of life scales and 2 single items. A preliminary cross-sectional study enrolling all the patients currently cared at the same hospital was carried out.

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.

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.

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.

Muscle cramps are the commonest side effect of home parenteral nutrition.

Background & Aims: Complications resulting from home parenteral nutrition (HPN) reduce a patient's quality of life. The major complications of catheter-related sepsis, venous thrombosis and chronic liver disease are well recognised. This study aimed to determine if there were other minor, but common complications that caused patient distress.

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.

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.

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.

The Scottish home parenteral nutrition managed clinical network: one year on.

The purpose of home parenteral nutrition (HPN) is to allow patients with intestinal failure a reasonable quality of life and to facilitate independence from hospital. A managed clinical network (MCN) has been established for the organisation of HPN. This multi-professional group works towards optimal patient management by adoption of nationally agreed, evidence standards and protocols, to allow equity of access to quality care.

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.

A randomised controlled trial evaluating the use of enteral nutritional supplements postoperatively in malnourished surgical patients.

Background: Patients who undergo surgery are at risk of malnutrition due to periods of starvation, the stress of surgery, and subsequent increase in metabolic rate. There are limited data on nutritional outcome of surgical patients.

Aims: To investigate changes in nutritional status and the influence of oral supplements on nutritional status, morbidity, and quality of life in postoperative surgical patients.

Problems of nutritional assessment in the acute setting.

Surveys have shown that 20-50% of hospital admissions suffer from nutritional depletion and that there is failure to recognize its existence and significance. More emphasis must be placed in clinical medicine on identifying subjects who are at high risk of developing disease-related malnutrition. There is a need to screen patients on admission to hospital to identify those at risk of nutrition-related complications.

Manganese requirement and toxicity in patients on home parenteral nutrition.

Two patients who were receiving home parenteral nutrition complained of vague neurological symptoms of such severity that they underwent full clinical appraisal. The only positive finding was that plasma manganese concentrations were greater than twice the upper 95% confidence interval of normal (7-27|nmol/l). In the light of this result all nine patients receiving home parenteral nutrition underwent evaluation for possible manganese toxicity.