Measuring parents’ perspective on continuity of care in children with special health care needs

INTRODUCTION: Children with special health care needs are an exponentially growing population needing integrated health care programmes that involve primary, community, hospital and tertiary care services. The aims of the study are (1) to develop and validate the Special Needs Kids Questionnaire (SpeNK-Q) designed to measure parents' perspective on continuity of care for children with special health care needs and (2) to evaluate the continuity of care based on parental experiences in this population. METHODS: SpeNK-Q was derived from a previous qualitative study and was based on Haggerty's constructs of informational, management and relational continuity. Parents of preterm birth children completed the 20-item SpeNK-Q at the second or subsequent planned follow-up visit after the child's hospital discharge. Principal component analysis was used to examine the structure of the instrument. RESULTS: Principal component analysis of 101 questionnaires administered allowed us to identify five factors explaining 60.2% of item variance: informational continuity; coordination of care; continuity of family-paediatrician relationship; family support; information on care plan. CONCLUSIONS AND DISCUSSION: SpeNK-Q proved to be a psychometrically promising instrument. Its utilisation could improve the identification of areas for service development, the delivery of coordinated care and support policy makers in redesigning integrated services

The role of preclinical models in creatine transporter deficiency: Neurobiological mechanisms, biomarkers and therapeutic development

Creatine (Cr) Transporter Deficiency (CTD) is an X-linked metabolic disorder, mostly caused by missense mutations in the SLC6A8 gene and presenting with intellectual disability, autistic behavior, and epilepsy. There is no effective treatment for CTD and patients need lifelong assistance. Thus, the research of novel intervention strategies is a major scientific challenge. Animal models are an excellent tool to dissect the disease pathogenetic mechanisms and drive the preclinical development of therapeutics. This review illustrates the current knowledge about Cr metabolism and CTD clinical aspects, with a focus on mainstay diagnostic and therapeutic options. Then, we discuss the rodent models of CTD characterized in the last decade, comparing the phenotypes expressed within clinically relevant domains and the timeline of symptom development. This analysis highlights that animals with the ubiquitous deletion/mutation of SLC6A8 genes well recapitulate the early onset and the complex pathological phenotype of the human condition. Thus, they should represent the preferred model for preclinical efficacy studies. On the other hand, brain-and cell-specific conditional mutants are ideal for understanding the basis of CTD at a cellular and molecular level. Finally, we explain how CTD models might provide novel insight about the pathogenesis of other disorders, including cancer

Weight management, psychological distress and binge eating in obesity. A reappraisal of the problem

The psychological effects of dieting and weight loss have been an area of controversy in obesity. As part of a large multicenter study involving 1944 obese subjects seeking treatment at Italian medical centers, we investigated the effects of weight loss on psychological distress and binge eating in 500 subjects remaining in continuous treatment at different centers with slightly different strategies (78.8% females; age: M = 46.2 years, SD = 10.8; BMI: M = 37.3 kg/m2, SD = 5.6). At baseline and after 12 months all subjects were evaluated by the SymptomCheckList-90 Global Severity Index (SCL-GSI) and by the Binge Eating Scale (BES). In both males and females, weight loss was associated with improved psychometric testing. Changes in SCL-GSI were associated with changes in BMI (b = 0.13; t = 2.85; p < 0.005), after adjustment for age, gender, initial BMI and center variability. Similarly, BES changes were associated with BMI change (b = 0.15; t = 3.21; p < 0.001). We conclude that in subjects compliant to follow-up a successful management of obesity, not directly addressing psychological distress, is associated with a significant improvement of both psychological distress and binge eating, linearly related to the amount of weight loss, independently of treatment procedures

Validating the Body Uneasiness Test (BUT) in obese patients

OBJECTIVE: To investigate the psychometric properties of the Body Uneasiness Test (BUT) in a large sample of subjects with obesity seeking treatment. BUT is a 71-item self-report questionnaire in two parts: BUT-A which measures weight phobia, body image concerns, avoidance, compulsive self-monitoring, detachment and estrangement feelings towards one’s own body (depersonalization); and BUT-B, which looks at specific worries about particular body parts or functions. METHODS: We recruited a clinical sample of 1,812 adult subjects (age range 18-65 years, females 1,411, males 401) with obesity (Body Mass Index, BMI ≥30 kg/m2) and a normal weight (BMI value between 18.5 and 25 kg/m2) non-clinical sample of 457 adult subjects (females 248, males 209) with an Eating Attitudes Test-26 (EAT-26) score under the cut-off point 20 (scores ≥20 indicate possible cases of eating disorders). RESULTS: The exploratory and confirmatory analyses confirmed a structural five-factor model for BUT-A and an eight-factor model for BUT-B. Internal consistency was satisfactory. Concurrent validity with Binge Eating Scale (BES) and Three-Factor Eating Questionnaire (TFEQ) was evaluated. The authors calculated mean values for BUT scores in adult (18-65 years) patients with obesity, and evaluated the influence of gender, age and BMI. Females obtained statistically significant higher scores than males in all age groups and in all classes of obesity; patients with obesity, compared with normal weight subjects, generally obtained statistically significant higher scores, but few differences could be attributed to the influence of BMI. CONCLUSION: The BUT can be a valuable multidimensional tool for the clinical assessment of body uneasiness in obesity; the scores of its sub-scales do not show a linear correlation with BMI values

Weight loss and clinical characteristics of young adults patients seeking treatment at medical centers: Data from the QUOVADIS Study

OBJECTIVE: To compare clinical characteristics, attrition, weight loss, and psychological changes of obese young adults and obese adults seeking treatment. MATERIALS AND METHODS: 1530 individuals seeking treatment in 18 Italian medical centers were evaluated. 382 cases (25%) were classified as young adults (age≤35 years), 1148 (75%) as adults (>35 years). Psychological distress, binge eating, body uneasiness, and attitude towards eating were evaluated, at baseline and after a 12-month weight-loss program, together with BMI changes. Weight-loss expectations and primary motivation for seeking treatment were also recorded. RESULTS: At baseline, young adults reported significantly higher BMI at age 20, weight loss expectations and body uneasiness scores than adults. A significantly higher percentage of young adults also reported improving appearance as primary reason for seeking treatment. The attrition rate was significantly larger in young adults. Among completers, the mean percent weight loss at 12 months and improvement of psychosocial variables were significantly higher in young adults than in adults. By intention to treat, BMI changes were no longer significant between groups. DISCUSSION: Obese young adults lose more weight and considerably improve psychological distress, but show a higher attrition rate after 12 months of continuous care in a real world medical setting

Recent advances in psychological therapies for eating disorders

Recent years have seen substantial consolidation and development of the evidence base for psychological therapies for eating disorders. This review summarises the key changes over that time period. Specific forms of cognitive behavioural therapy and family-based treatment have consolidated and extended their positions as treatments of choice despite the development of novel approaches. However, there is still a significant need for further development and testing to improve recovery rates, particularly in anorexia nervosa

An initial psychometric evaluation and exploratory cross-sectional study of the Body Checking Questionnaire among Brazilian women

Body checking is considered an expression of an excessive preoccupation with appearance. The first aim of this study was to evaluate the psychometric properties of a Brazilian Portuguese version of the Body Checking Questionnaire (BCQ). Additionally, we wanted to examine the questionnaire’s associations with body avoidance behaviour, body mass index, dietary habits, and the intensity, frequency, and length of physical exercise. Finally, we also examined the differences between the total BCQ score and the individual BCQ factor scores. Differences between active and sedentary persons and between non-dieters and those on weight-loss diets were also analyzed. For the psychometric study, 546 female public university students from four different courses were surveyed. Two minor samples of university students and eating disorders women were also recruited. In the second part of the study, 403 women were recruited from weight-loss programs, gyms, and a university. All participants were verbally invited to participate in the research and voluntarily took part. Confirmatory factor analysis showed a good fit to the original model of the Brazilian BCQ that retained all 23 items. Satisfactory evidence of construct validity and internal consistency were also generated through analysis of factor loadings, t-values, Cronbach’s alpha, and construct reliability tests. The results also showed associations among body checking and body avoidance, body satisfaction, social anxiety, body mass index, and the frequency and intensity of physical exercise. Significant differences were found between non-dieters and weight-loss dieters for all BCQ factors and the total BCQ score. For physically active and sedentary persons, a significant difference was only observed for idiosyncratic checking behaviour. In conclusion, the BCQ appears to be a valid and reliable scale for Brazilian research, and the associations and differences found in this study suggest that women at gyms and especially in weight-loss programs should be targeted for future body checking studies

Specialized inpatient treatment of adult anorexia nervosa: effectiveness and clinical significance of changes

Background: Previous studies have predominantly evaluated the effectiveness of inpatient treatment for anorexia nervosa at the group level. The aim of this study was to evaluate treatment outcomes at an individual level based on the clinical significance of improvement. Patients' treatment outcomes were classified into four groups: deteriorated, unchanged, reliably improved and clinically significantly improved. Furthermore, the study set out to explore predictors of clinically significant changes in eating disorder psychopathology. Methods: A total of 435 inpatients were assessed at admission and at discharge on the following measures: body-mass-index, eating disorder symptoms, general psychopathology, depression and motivation for change. Results: 20.0-32.0% of patients showed reliable changes and 34.1-55.3% showed clinically significant changes in the various outcome measures. Between 23.0% and 34.5% remained unchanged and between 1.7% and 3.0% deteriorated. Motivation for change and depressive symptoms were identified as positive predictors of clinically significant changes in eating disorder psychopathology, whereas body dissatisfaction, impulse regulation, social insecurity and education were negative predictors. Conclusions: Despite high rates of reliable and clinically significant changes following intensive inpatient treatment, about one third of anorexia nervosa patients showed no significant response to treatment. Future studies should focus on the identification of non-responders as well as on the development of treatment strategies for these patients

Eating disorders in weight-related therapy (EDIT): Protocol for a systematic review with individual participant data meta-analysis of eating disorder risk in behavioural weight management

The Eating Disorders In weight-related Therapy (EDIT) Collaboration brings together data from randomised controlled trials of behavioural weight management interventions to identify individual participant risk factors and intervention strategies that contribute to eating disorder risk. We present a protocol for a systematic review and individual participant data (IPD) meta-analysis which aims to identify participants at risk of developing eating disorders, or related symptoms, during or after weight management interventions conducted in adolescents or adults with overweight or obesity. We systematically searched four databases up to March 2022 and clinical trials registries to May 2022 to identify randomised controlled trials of weight management interventions conducted in adolescents or adults with overweight or obesity that measured eating disorder risk at pre- and post-intervention or follow-up. Authors from eligible trials have been invited to share their deidentified IPD. Two IPD meta-analyses will be conducted. The first IPD meta-analysis aims to examine participant level factors associated with a change in eating disorder scores during and following a weight management intervention. To do this we will examine baseline variables that predict change in eating disorder risk within intervention arms. The second IPD meta-analysis aims to assess whether there are participant level factors that predict whether participation in an intervention is more or less likely than no intervention to lead to a change in eating disorder risk. To do this, we will examine if there are differences in predictors of eating disorder risk between intervention and no-treatment control arms. The primary outcome will be a standardised mean difference in global eating disorder score from baseline to immediately post-intervention and at 6- and 12- months follow-up. Identifying participant level risk factors predicting eating disorder risk will inform screening and monitoring protocols to allow early identification and intervention for those at risk