Illness beliefs of patients on home parenteral nutrition (HPN) and their relation to emotional distress.

BACKGROUND AND AIMS: Intestinal failure (IF) is likely to be the source of significant emotional distress for patients; however, little is known about the system of beliefs held by patients on home parenteral nutrition (HPN) that may underpin such distress. The present study aimed to: (1) examine the 'common-sense' representation of IF in patients on HPN; (2) investigate whether there were any differences in such representations with regard to primary diagnosis, clinical history or aspects of treatment; and (3) test the relative importance of psychological, disease and treatment factors in accounting for IF-specific emotional outcome (feelings of anger, upset, anxiety, low mood, and fear). METHODS: Sixty-one patients with IF on HPN completed an assessment of their beliefs about causes of their condition, consequences, symptoms experienced, personal and treatment control, chronicity and recurrence, and emotional representations (feelings of anger, upset, anxiety, low mood, and fear). Standard clinical information was also gathered from patients. RESULTS: Neither primary diagnosis, age, duration since start of HPN, number of nights on HPN, gender, presence of a stoma, or age at onset of HPN showed any significant differential effect on emotional representations. The principal predictors of emotional representations were: (1) poorer appraisals of patients' ability to exert personal control over aspects of their condition and treatment; and (2) the perception that the condition and treatment makes little sense to the patient (illness coherence). CONCLUSIONS: The current study demonstrates that the illness and their treatments per se are insufficient to account for patients' emotional distress. Rather, cognitive variables, chiefly beliefs about personal control and illness coherence account for more of the variance in emotional outcome than any other clinical or health-related variable assessed in the current study.

Improving quality in a national intestinal failure unit: greater efficiency, improved access and reduced mortality.

PROBLEM: In 2010, there was a significant waiting list for admission to the intestinal failure unit (IFU) at the Salford Royal National Health Service (NHS) Foundation Trust. There had been a steady increase in the number of new patients referred to the IFU (89 patients 2005; 152 patients 2012) and the number of established patients requiring home parenteral nutrition (HPN) (135 patients 2005; 206 patients 2012) over the last decade. The impact of the resulting long waiting list for these complex patients was that patient deaths occurred in those awaiting admission. DESIGN: Continuous improvement methodology using the model for improvement and sequential plan-do-study-act cycles. SETTING: Salford Royal NHS Foundation Trust IFU; a large NHS teaching hospital in Northwest England. KEY MEASURES FOR IMPROVEMENT: The primary outcome measures were inpatient length of stay and time spent on waiting list prior to admission. STRATEGIES FOR CHANGE: A continuous improvement programme, supported by a project manager. RESULTS: There has been a 21% reduction in average length of stay on the IFU from 55.7 to 44.0 days and a reduction of 72% in the average length of time new patients spent on the waiting list for admission from 65.7 to 18.5 days. These changes were associated with concomitant reduction in 30-day readmission rate from 12.1% to 4.5% and early suggestions of reduced inpatient and waiting list mortality. CONCLUSIONS: It is possible to improve the efficiency of a large national service for complex patients using quality improvement methodology, resulting in improved access and reduced waiting list mortality.