The impact of intestinal transplantation on quality of life.

INTRODUCTION: Intestinal failure (IF) and intestinal transplant (ITx) are associated with poor quality of life (QoL). Disease-specific assessment of QoL for IF and ITx is challenging, owing to the different problems encountered. We have sought to compare QoL pre-ITx with post-ITx and have compared generic QoL with a stable IF population. METHODS: Two prospectively maintained databases of patients referred for and undergoing ITx and a chronic (Type 2 & 3) IF cohort were interrogated. QoL instruments used were generic (EQ-5D-5L and SF-36) and disease-specific (HPN-QOL and ITx-QOL). Analysis used Student's t-test and one-way ANOVA with Bonferroni correction for multiple comparisons. Data were collected pre- and post-ITx at 3, 6, 12-months and yearly thereafter. RESULTS: All QoL instruments improved following ITx to levels comparable with a cohort of stable IF patients not requiring ITx. Both the visual analogue score component (EQ-5D-5L) and the effect of underlying illness on QoL (HPN-QOL/ITx-QOL) were higher following ITx than either pre-ITx or when compared with the IF cohort. Effects on general health, ability to eat and drink, to holiday and travel were improved as early as 3 months post-ITx. Other components did not before 6-12 months following ITx, but were maintained to at least 24 months. Patient personal financial pressures are greater following ITx, even in a publicly funded healthcare system. CONCLUSION: ITx has beneficial effects on QoL compared to those assessed for or awaiting ITx. QoL following ITx is similar to patients with IF not requiring ITx. A QoL instrument that covers the journey of patients from IF through ITx would assist longitudinal analysis of the value and timing of ITx at an individual level.

The active problem solving of patients dependent on home parenteral nutrition: A qualitative analysis.

BACKGROUND & AIMS: People with chronic, type 3, intestinal failure often require long-term home parenteral nutrition (HPN). People receiving HPN have frequent interactions with their healthcare, due to the need for close monitoring and due to recurrent hospital admissions. Individuals' responses to, and interactions with, their health care service provides are poorly described. We conducted a service evaluation to explore people's experiences of HPN-related healthcare interactions in order to identify how service providers can best meet the individualised needs of patients. METHODS: We interviewed ten people receiving HPN. The participants were asked about their healthcare interactions related to HPN. The data were analysed using a qualitative research method known as interpretive phenomenological analysis. This analytical approach is concerned with the meaning that people ascribe to particular events, in this case their HPN-related healthcare interactions. RESULTS: The participants in this study described a range of psychosocial problems related to their HPN healthcare interactions, including reliance, risk and restrictions. Participants' solutions to these problems included adaptation of their routine, self-guardianship and passivity. Sometimes, these solutions generated secondary problems of their own, including concerns with resource use, negative healthcare interactions and conflicts of responsibility. A range of contextual factors influenced how participants interpreted their healthcare interactions and the solutions available to them. These contextual factors included continuity of healthcare professionals, the attitude of staff, and information and knowledge about HPN. CONCLUSIONS: By attending to the individual meaning ascribed to healthcare events, and the contextual factors that surround these events, we have been able to better understand the decisions made by patients dependent on HPN. This suggests that healthcare professionals may also better understand their patients' decision making by attending to the individual meaning that patients ascribe to healthcare events and to contextual factors. We propose a model to describe the process of problem -> resolution -> problem in which participants are actively engaged.

Bringing prostate cancer quality of life research back to the bedside: translating numbers into a format that patients can understand.

PURPOSE: Although measuring quality of life of patients with prostate cancer serves important research goals, its primary clinical purpose is informing patients. Sophisticated quality of life measures produce purely numerical results that patients have difficulty understanding. We present an approach that preserves the methodological strengths of validated multi-item measures but provides more accessible information for clinical use. MATERIALS AND METHODS: Using validated indexes measuring urinary, bowel and sexual function we surveyed patients with clinically localized prostate cancer before treatment and at intervals thereafter. Based on patient responses to parallel distress measures we defined 3 levels of function, including normal-no abnormal symptom, intermediate-any abnormal symptom but none severely abnormal and poor-any severely abnormal symptom. We then translated patient survey results into these levels. To assess measurement properties we compared average symptom distress scores in patients at each symptom level. RESULTS: Levels of function and patient distress scores correlated strongly. Large and approximately equal differences in distress scores separated patients at successive levels in all symptom indexes (effect size greater than 1.2, p < 0.0001). Using these categories we created tables showing 24-month outcomes in 417 previously reported patients by pretreatment symptom level and treatment, providing a tool for patients to determine posttreatment outcomes in similar patients. CONCLUSIONS: Using symptom indexes to define levels of function produces a quality of life metric that is valid, defines quantitative intervals, is transparent and may be more useful to patients. This approach provides methodologically sound outcome information to patients attempting to choose a prostate cancer treatment.

Home parenteral nutrition and the psyche: Psychological challenges for patient and family.

The paper discusses the case histories of three patients who have faced the emotional implications of being initiated onto long-term parenteral nutrition (PN). In each case the patient's personal and family history, relationship to their illness and the presence or relative absence of resentments and grievances have influenced their ability to tolerate the training and the transition to home PN (HPN). In addition, the emotional importance of food and feeding from a developmental and social perspective is explored, together with the numerous psychological and social 'losses' experienced by all patients on PN and the adaptations required within the family setting. The 'meaning' of PN to the individual and the need for both internal and external support are identified and, based on clinical experience, a number of features are described that may be indicative of the relative abilities of different patients to cope with HPN. Finally, the role of a dedicated Psychological Medicine Unit closely allied to a nutrition service is discussed.

A preliminary assessment of the impact of cranial osteopathy for the relief of infantile colic.

In this open, controlled, prospective study, 28 infants with colic were randomized to either cranial osteopathic manipulation or no treatment; all were seen once weekly for 4 weeks. Treatment was according to individual findings, and administered by the same practitioner. Parents recorded time spent crying, sleeping and being held/rocked on a 24-hour diary. A progressive, highly significant reduction between weeks 1 and 4 in crying (hours/24h) was detected (P<0.001) in treated infants; similarly, there was a significant improvement in time spent sleeping (P<0.002). By contrast, no significant differences were detected in these variables for the control group. Overall decline in crying was 63% and 23%, respectively, for treated and controls; improvement in sleeping was 11% and 2%. Treated infants also required less parental attention than the untreated group. In conclusion, this preliminary study suggests that cranial osteopathic treatment can benefit infants with colic; a larger, double-blind study is warranted.

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.

[Functional intestinal disorders: assessment and perception by physicians of their patients perception. Results of two national studies]. / Troubles fonctionnels intestinaux: évaluation de la perception par les praticiens du vécu de leurs patients. Résultats de deux enquêtes nationales.

OBJECTIVE: In 1999, a first national survey on functional intestinal disorders (FID) revealed the patients' good perception of the medical corps and treatments proposed. The aim of the present study was to assess the physicians' perception of their patients, their symptoms and their degree of satisfaction. METHODS: The survey was conducted among the physicians who had recruited the patients of the initial study. Eight hundred and eighty five replies were analysed (general practitioners--GPs: 88%; gastro-enterologists--GE: 11%). RESULTS: The mean number of patients with FID seen in one week was of 11.40 (GP: 10.80; GE: 16.29). Thirty percent of patients were seen for the first time by a GP and 65 percent by a GE. The mean yearly number of consultations for these patients was of 7.16 for the GPs and 3.81 pour les GEs. A coloscopy was prescribed by 49% of GPs and 66% of GEs. The pain and transit disorders mentioned in 98 and 78.7% of cases had evolved over a mean of 56.57 months. COMMENTS: Although aware of the repercussion of FID in daily life, the practitioners evaluated a psychological component of 69% in the expression of the disorder. They considered the pain intense in 6% of cases versus the 41% expressed by the patient. The scores out of 10 for 8 items showed a mean result of 6.86 in their evaluation of the degree of the patients' understanding of their disease and its treatment, and of 6.13 for the quality of the medical act. These same criteria, assessed one year earlier by the patients themselves, showed better scores.