Self-efficacy beliefs, faecal incontinence and health-related quality of life in patients born with anorectal malformations.

AIM: Anorectal malformations (ARMs) are rare congenital colorectal anomalies with long lasting consequences, among which faecal incontinence is one of the most relevant since it may strongly affect patients' health-related quality of life (HRQoL). Although a growing body of literature supports the importance of self-efficacy in chronic disease health outcomes, only few studies have focused on self-efficacy in ARMs and in faecal incontinence. The purpose of the present study is to examine the mediational role of self-efficacy in the path between faecal incontinence and HRQoL in patients born with ARMs. METHOD: Ninety-eight adult patients from the Italian Association for Anorectal Malformations (AIMAR) responded to measures of faecal incontinence, self-efficacy for managing ARM consequences, and physical and mental HRQoL (SF-36). Data were analysed by means of structural equation models. RESULTS: The tested model provides support for the guiding hypothesis. Fit indices indicate that the model fits the data well (χ2  = 33.48, df = 23, P = 0.07; comparative fit index [CFI] = 0.97; root mean square error of approximation [RMSEA] = 0.07; standardized root mean square residual [SRMR] = 0.05). Faecal incontinence has negative effects on both physical and mental HRQoL, as well on self-efficacy. In turn, self-efficacy has a positive and direct effect on mental HRQoL. CONCLUSION: Faecal incontinence is the most relevant and negative factor influencing HRQoL; in addition, self-efficacy contributes in reducing emotional distress and in improving mental health outcomes. Longitudinal and controlled studies may be helpful to evaluate the effectiveness of self-efficacy interventions in improving mental HRQoL in patients with faecal incontinence.

The role of coping strategies on health-related quality of life in adults with anorectal malformations.

PURPOSE: Coping strategies have been acknowledged as crucial for the well-being and for health-related quality of life (HRQoL). The main aim of the present study is to determine whether different types of coping strategies predict HRQoL in patients born with ARM, above and beyond the variance explained by fecal and urinary continence. METHODS: 71 adult patients from the Italian Parents' and Patients' Organization for Anorectal Malformations (AIMAR) participated in the study. Participants completed measures of fecal and urinary continence of the Hirschsprung Disease/Anorectal Malformation Quality of Life (HAQL) (Hanneman et al. in Dis Col Rect 44:1650-1660, 2001), the Short Form Health Survey (SF-36) (Apolone and Mosconi in J Clin Epidemiol 51:1025-1036, 1998), and the Brief Coping Orientation to Problems Experienced (COPE) Inventory (Carver in Int J Behav Med 4:92-100, 1997), which measures different coping strategies: maladaptive, problem-focused and emotion-focused. RESULTS: Hierarchical regression analyses showed that fecal continence (ß = 0.53, p < 0.01) and urinary continence significantly predict (ß = 0.23, p < 0.05) Physical HRQoL. Fecal continence (ß = 0.36, p < 0.01) and maladaptive coping strategies significantly predict (ß = -0.27, p < 0.05) Mental HRQoL. CONCLUSION: Besides considering the importance of fecal and urinary continence for Physical HRQoL, these findings indicate that maladaptive coping strategies are associated with worse Mental HRQoL. Interventions aimed at enhancing the patients' HRQoL should target coping strategies by reducing denial, behavioral disengagement, substance abuse, and self-blame.

Transition from childhood to adolescence: Quality of life changes 6 years later in patients born with anorectal malformations.

BACKGROUND/PURPOSE: Disease-specific quality of life (QoL) may be more or less relevant when children enter preadolescence/adolescence. Few attentions have been given to development and transition periods. Aim of the present longitudinal study is to evaluate ARM specific changes in QoL and the stability of QoL over 6 years. METHODS: Questionnaires were sent to families of the AIMAR Association (in 2007 and in 2013/2014). They included the Hirschsprung's Disease/ARM QoL Questionnaire (HAQL, [1]). Rank correlations and within group comparisons for the HAQL subscales were conducted analyzing the scores of time 1 vs time 2. Gender effects were tested. RESULTS: 134 parents answered the questionnaires at time 1 and 73 at time 2. Results of the repeated Analyses of Variance indicated improvements in the continence subscales ("Presence of Diarrhea," "Fecal Continence"). QoL significantly worsened in "Social and Emotional Functioning" and in "Body Image" areas. The analysis of stability of change indicates that QoL scores remain stable, with the exception of the Body Image area. CONCLUSIONS: Despite improvements in the continence areas, parents reported worse levels of QoL in the psychosocial areas, as their child grow. As patients grow, they might have more difficulties in daily and social activities, and feel more frequently ashamed and more dissatisfied with their body.

Feelings of depression in people with ARM: the role of critical incidents and perceived difficulties in close and sexual relationships.

PURPOSE: Managing a chronic disease may be a difficult task which may lead patients to experience psychological distress and depression. Some studies showed that, in ARM patients, fecal incontinence (FI) is related to symptoms of depression while others studies did not. No studies investigated this relationship in adults. Since fear of having FI episodes, negative feelings associated with these episodes, and difficulties in close and sexual relationships are often reported by patients as important consequences of ARM, we were interested in investigating whether these aspects contribute in explaining feelings of depression. METHODS: Questionnaires were sent to 160 adult members of the Italian Association for Anorectal Malformation. A new scale measuring the fear of having FI episodes, negative feelings associated with these episodes and difficulties in close/sexual relationship was developed. Depressive feelings and FI were also measured. RESULTS: Seventy-two adults answered the questionnaires. Regression analyses showed that, in males, depressive feelings were predicted by difficulties in close and sexual relationships (B = 0.46; P < 0.01), while, in females, they were predicted by the fear of having FI episodes (B = 0.53; P < 0.05) and by negative feelings (B = 0.58; P < 0.01). CONCLUSIONS: Interventions aimed to prevent depression in ARM patients should consider gender and should be targeted on different aspects.

Quality of life in children and adolescents with anorectal malformation.

PURPOSE: Quality of life (QOL) is an important endpoint in health outcomes research, especially in pediatric chronic conditions. While some studies suggest that patients with ARM report a lower level of physical and psychosocial QOL, as compared to healthy peers, not all research shows this consistently. The aim of this study was to compare the QOL of Italian children and adolescents with ARM to the QOL of a large control sample of healthy peers. METHODS: Parents of 109 children with ARM and 336 schoolchildren, completed the Pediatric Quality of Life Inventory. Analysis of variances were used to compare the groups. RESULTS: Compared to healthy peers, children with ARM showed lower emotional functioning (F = 8,41; p = .004), social functioning (F = 4,9; p = .027) and school functioning (F = 14,7; p = .000). In the adolescent group, females had a worse QOL in the physical functioning domain (F = 5,01; p = .03) than males, independent of group membership. CONCLUSIONS: While children with ARM show a more impaired QOL compared to their peers, this difference does not emerge in the adolescent group. Our results are consistent with previous findings which hypothesize that while patients with ARM face more difficulties during childhood, by adolescence they may have learned to overcome these difficulties.

Does mothers' perception of social support mediate the relationship between fecal incontinence and quality of life of the child?

PURPOSE: Fecal incontinence is a common problem in children and adolescents with anorectal malformation (ARM) and may negatively impact psycho-social well-being. Mothers' perception of social support has been proved to contribute to children's quality of life (QOL). Considering ARM studies, the role of family and social resources have received little attention. The aim of the present study was to analyze whether mothers' perception of social support mediates the impact of child fecal incontinence on his/her QOL. METHODS: One hundred and nine mothers with a child born with ARM (aged 6-15 years old; mean age = 11 years) completed questionnaires including the fecal incontinence subscale of the Hirschsprung's Disease/Anorectal Malformation QOL Questionnaire, the Pediatric QOL Inventory, and a social relationship questionnaire. Structural equation models were used to explore the relations hypothesized. RESULTS: No differences were found in the QOL scores across gender. The hypothesized model fits the data well; mothers' perception of social support partially mediated the relationship between fecal incontinence and QOL. CONCLUSIONS: An important direction for pediatric surgeons and their interdisciplinary teams may be to develop strategies to strengthen mothers' social relationships.

Concurrent validity of the Disordered Eating Questionnaire (DEQ) with the Eating Disorder Examination (EDE) clinical interview in clinical and non clinical samples.

OBJECTIVES: The aim of the present study was to evaluate the concurrent validity, specificity and sensitivity of the Disordered Eating Questionnaire (DEQ). The DEQ is a brief questionnaire (24 items), that can be used for epidemiological screenings. It addresses face valid questions to evaluate frequency and intensity of disordered eating attitudes and behaviors over a time frame of three months. DESIGN: The study was conducted using a cross-sectional design. METHODS: The DEQ was completed by 190 eating disordered patients (73 patients with Anorexia, 48 with Bulimia, 11 with Binge Eating Disorder, 48 with Eating Disorders Not Otherwise Specified, 10 recovered patients) and 88 healthy controls. RESULTS: In the whole group, DEQ scores were highly correlated with the scores of the Eating Disorder Examination (EDE 12.0D). Sensitivity and specificity were evaluated. In the female subsample, the ROC curves indicate that a cut-off score of 30 allows to obtain a sensitivity of 82% and a specificity of 68%. A formative approach of Structural Equationing Model confirm the construct validity of the instrument. CONCLUSIONS: The DEQ confirm to be a valid and reliable instrument, whose sensitivity and specificity is comparable to that of the EAT-40 even though it has fewer items.

Sleep disorders in hemodialyzed patients--the role of comorbidities.

BACKGROUND: Sleep disorders are very frequent in hemodialyzed patients, but the relationship between these disorders and water withdrawal, urea removal and comorbidities has not been sufficiently clarified. METHODS: The study comprised a group of 88 patients in good nutritional condition, with target hemoglobin concentration, good control of blood pressure and optimal dry weight. After answering a questionnaire (SDQ) based on the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) patients were assigned to one of 3 groups: those with no disturbances (no.20), those with subclinical disorders (n.35) and insomniacs (n.33). Yearly fluid and urea withdrawal by dialysis and the Charlson Comorbity Index were measured. RESULTS: Sleep disorders were observed in 77.27% of the patients. There was no difference in body fluid and urea withdrawal between groups. In the group of patients with no sleeping disturbances, the Charlson Comorbidity Index was significantly lower (p<0.001) than in patients with subclinical disorders or insomnia and emerged as a strongly associated with sleep disturbances. The study also attributes a predictive role to age, dialytic age, dialysis shift, antihypertensive drugs. The data indicate that, in evaluating sleeping disorders in patients on maintenance hemodialysis, comorbidities should be assessed.

Internal consistency, convergent validity and reliability of a brief questionnaire on disordered eating (DEQ).

Clinical interviews are considered the gold standard for the evaluation of the specific psychopathology associated with eating disorders. However, there are situations in which brief but valid and reliable self-report questionnaires can be helpful. For this reason, we have developed a new questionnaire, called the DEQ (Disordered Eating Questionnaire), brief enough to be used in epidemiological screenings, that evaluates the frequency and intensity of disordered eating attitudes and behaviours within a time frame of three months and addresses face valid questions to the general population. The aim of this study was to evaluate the dimensionality, reliability and convergent validity of this questionnaire. The DEQ was filled in by Italian secondary school girls and boys, together with the Contour Drawing Rating Scale (CDRS) and with the Eating Attitudes Test (EAT-26). The results showed a single component that explain a portion of variance of around 36%. The reliability of the scale is highly satisfactory. The scale is also valid, since scores on the DEQ scale are significantly and highly correlated with body dissatisfaction, measured by the CDRS, with body mass inex (BMI) and with all the subscales of the EAT-26. As expected, there were gender differences, given that DEQ scores were higher in females than in males.

Validity of a short insomnia questionnaire: the SDQ.

The SDQ is a brief self-report insomnia questionnaire, which permits the rapid evaluation of insomnia based on the DSM-IV and ICSD-R criteria. The SDQ was developed to provide a fast and valid instrument both for the pre-screening of subjects who complain of insomnia and for epidemiological studies based on standardized definitions of this sleep disorder. Two studies were carried out in order to assess the validity of the SDQ as a self-report measure of insomnia. In the first study the convergent validity of the SDQ was assessed with respect to the global score of the Pittsburgh Sleep Quality Index (PSQI) in a sample of general practitioners' patients. The second study assessed the sensitivity and the specificity of the SDQ in discriminating between insomniacs or normal sleepers in a sample of college students who were given an extensive sleep evaluation within an insomnia counseling program. The SDQ classifications have a good convergent validity with the global sleep quality scores of the PSQI and its classifications of students who complain of or who do not complain of problems of insomnia have a sensitivity of 95% and a specificity of 87%. Results indicate that the SDQ is a valid paper and pencil instrument to screen insomnia.

Sleep and migraine: an actigraphic study.

The aim of the study was to evaluate sleep of children with migraine during the interictal period and the modifications of sleep which precede, are concomitant with, or follow migraine attacks. Eighteen patients with migraine without aura were compared with a group of 17 healthy age-matched children. Sleep parameters were monitored for two full weeks by means of actigraphs and self-report diaries. Headache diaries were also filled out in order to evaluate the occurrence and the characteristics of migraine attacks. Fifty-seven attacks were recorded during the monitoring period. During the interictal period, sleep parameters of children suffering from migraine did not differ from those of controls; only sleep onset latency was slightly prolonged in the migraine group. Timing of the attack affected nocturnal motor activity which presented the lowest values on the night preceding the attack, indicating a decrease in cortical activation during sleep preceding migraine attacks. Further studies should clarify if the observed reduction in nocturnal motor activity close to the attack is related to neurotransmitter imbalance.

The assessment of daytime sleep propensity: a comparison between the Epworth Sleepiness Scale and a newly developed Resistance to Sleepiness Scale.

INTRODUCTION: The Epworth sleepiness scale (ESS) is widely used as a way of measuring subjective sleep propensity in research and clinical practice. Psychometric studies do not rule out the presence of more than one latent dimension underlying the items. OBJECTIVE: Aims of the present study were to: (a) evaluate psychometric proprieties of the ESS by means of classic psychometric techniques; (b) compare them with those from a newly developed resistance to sleepiness scale (RSS); (c) evaluate, following the latent trait theory, whether the items of both ESS and RSS could be conceptualized as different levels of an interval variable representative of a single latent trait related to sleep propensity. METHODS: One hundred and forty-six inpatients suffering from different sleep disorders filled in both the RSS and ESS in a sleep disorder centre. RESULTS: Indexes of fit derived by the application of the extended logistic model are consistent with the idea that each ESS item can be conceptualized as different levels of an interval variable representative of a single latent trait. However, most of the ESS items are found to be located at the opposite extremes of this continuum. CONCLUSIONS: The under representation of situations characterized by an intermediate soporific nature in the ESS could limit ESS sensitivity to detect intermediate variations of sleep propensity.

Brain function and effects of shift work: implications for clinical neuropharmacology.

Night or shift work is to a relevant extent unavoidable, suits a growing preference for flexibility and is predicted to spread. However, a significant percentage of shift workers report discomfort or health problems and they often (15-20% of cases) move to different occupations. Apart from social implications, the issue has medical and scientific relevance, with evidence suggesting that the circadian rhythm phases are neither equivalent nor interchangeable with respect to function and performance. Shift work may affect the gastrointestinal and cardiovascular functions, alter the hormonal and sleepiness cycles, favor sleep disturbances of medical relevance, interfere with behavior and social life and increase the risk of accidents (e.g. road accidents). The implications for clinical (neuro)pharmacology are relevant and, in several instances, critical. Shift work can interfere with mechanisms regulating drug kinetics in peripheral compartments and action at selective brain sites, either directly or through effects on the gastrointestinal/hormonal cycles. In this paper, the relevant literature is reviewed and original data on the effects of shift work are reported. Basic and clinical research should take into account the possible effects on drug action of an active life and working schedule in inappropriate phases of the circadian cycles and the risk of inadequate drug dosing or unexpected abnormal action in subjects under long-term or chronic treatment. A scientific approach, action by the scientific community involved in pharmacological research and monitoring by the regulating agencies are advisable. Regulation may help reduce the medical and social impact and improve quality of life.

Insomnia is associated with systolic hypertension in uremic patients on hemodialysis.

A newly developed questionnaire was administered to 140 hemodialyzed patients (82 M and 58 F) who have achieved adequate anemia correction according to the best guidelines with the aim: to evaluate the prevalence of clinical/subclinical dyssomnias in these patients; to study the influence of the dialytic shift (morning versus afternoon schedules) on sleep duration and disturbancies; and to evaluate the relationship between clinical sleep disorders and blood pressure values in uremic patients. Results indicated that 85% of uremic patients undergoing hemodialysis complain of clinical insomnia (frequent, persistent and associated with daytime consequences) or sub-clinical sleep disorders; patients dialyzing in the morning sleep significantly less during the night preceding the treatment, than those dialyzing in the afternoon; older patients complaining of clinical insomnia have a higher risk of failure to achieve target-optimal values in systolic blood pressure.

Effects of different sleep reductions on daytime sleepiness.

This study evaluated the effects of different amounts of sleep and SWS restriction on the ensuing day-time sleepiness. Six healthy selected males, after one adaptation night and an initial 8-hr baseline night, were allowed to sleep 5, 4, 3, 2, and 1 hr with a 1-week interval between conditions. The following day, 4 sleep onset MSLT trials and 2 Wilkinson Auditory Vigilance Task (WAVT) were administered. Before each MSLT, self evaluations of sleepiness and activation on a visual analogue scale (ADAS) were assessed. Each restriction night was followed by an 8-hr recovery night, and a final 8-hr baseline night was recorded. The day after each night the same diurnal tests were repeated. Results indicated a linear increase in the propensity to sleep (MSLT) and of subjective sleepiness as a function of the increase in sleep restrictions. Performance scores (WAVT) showed that vigilance is partially affected by sleep restrictions. For each measure, regression analyses showed that the effect of sleep reduction is better predicted by the total duration of sleep than by the amount of SWS. Correlations between measures were negligible with the exception of those between performance and subjective sleepiness measures.

Actigraphic motor asymmetries during sleep.

Much evidence indicates that during sleep there is a repatterning of motor asymmetries with a relative advantage of the left hand (i.e., the left hand moves more than the right). This could be due to the ability of the right hemisphere in operating at levels of reduced arousal (arousal hypothesis) or to its superior spatial abilities (motor specificity hypothesis), or it could indicate a greater need for sleep in the left hemisphere (homeostatic hypothesis). Since only the latter hypothesis predicts that the repatterning should be present in the first part of sleep (i.e., when the homeostatic processes are more pronounced), the present study evaluated whether actigraphic data are consistent with this prediction. Sixteen right-handed college students wore actigraphs (AMI 16K) on both upper and lower limbs for about 56 hours. Factorial ANOVAS were carried out on side (left vs right) and part (first vs second) of the recording period during sleep and waking. During waking, the right hand showed more intense motor activity as compared to the left. During sleep, in the first part of the night, the right hand lost this advantage, while in the second part of the night it regained its superiority. Since this repatterning was specific for hand movements and no difference was found in overall motor activity and in arousal between the two parts of the sleep period, the results are interpreted as consistent with the homeostatic hypothesis.

Assessing vigilance through a brief pencil and paper letter cancellation task (LCT): effects of one night of sleep deprivation and of the time of day.

Behavioural effects of the lack of sleep in normal subjects have been investigated mostly by experimenter-paced choice reaction times in prolonged stimulus detection tasks. However, length and procedure complexity of these tasks limit their use in research on larger numbers of subjects. The aim of the present study was to assess the effectiveness of a brief subject-paced pencil and paper performance task, i.e. letter cancellation task (LCT) in revealing the effects of one night of sleep deprivation. In addition, the authors evaluated sleep loss and time of day effects on six Visual Analogue Scales (VAS) measuring subjective activation-deactivation. Results show that a LCT is sensitive in revealing the effects of time of day and of 24 h of sleep deprivation. Effects of sleep deprivation were also revealed by VAS data. Sleepiness, tiredness and energy scales on the VAS were also affected by time of day. Despite the sensitivity of both the LCT and VAS, there was little correspondence between performance and subjective measures.

A finger-tapping task and a reaction time task as behavioral measures of the transition from wakefulness to sleep: which task interferes less with the sleep onset process.

The aim of this study was to assess whether a finger-tapping task (FTT), in which normal subjects repeatedly tap on a button while falling asleep, could be less disturbing and provide comparable information on the sleep onset period (SOP) with respect to a reaction-time task (RTT) to acoustic stimuli, in which the onset of sleep can be delayed by the arousing effect of the acoustic stimuli. Twelve subjects slept at their homes and six slept in a sleep laboratory for four consecutive nights. After one adaptation night and one baseline night, subjects were required to fall asleep in the third and fourth nights, bimanually performing either a RTT or a FTT. The results indicate that the FTT interfaces less with the SOP compared to the RTT and suggest that the FTT provides further advantages as a behavioral measure of the transition from wakefulness to sleep. In fact, the tapping task is associated with significantly shorter behavioral and polysomnographic sleep onset latencies and with a greater proportion of slow-wave sleep (SWS) during the transition from wakefulness to sleep compared with the RTT. Furthermore, correlations among subjective, behavioral, and electroencephalograph (EEG) latencies confirm the validity of the finger-tapping task as a behavioral measure of sleep onset.