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.