Fatigue,emotional functioning,and executive dysfunction in pediatric multiple sclerosis

Objective: Fatigue, depression, anxiety, and executive dysfunction are associated with multiple sclerosis (MS) in adults. Existing research suggests similar problems in pediatric MS, but relationships between these variables have not been investigated. This study investigates the associations between executive functioning and fatigue, emotional functioning, age of onset, and disease duration in pediatric MS.

Methods: Twenty-six MS or Clinically Isolated Syndrome (CIS) patients, ages 7 to 18, were evaluated through a multidisciplinary demyelinating diseases clinic. Participants completed neuropsychological screening including Verbal Fluency, Digit Span, and Trail-Making Test. Parents completed rating forms of behavioral, emotional, and executive functioning. Patients and parents completed questionnaires related to the patient’s quality of life and fatigue. Pearson’s correlation coefficients were calculated to investigate relationships between fatigue, emotional functioning, and executive functioning, as well as to examine correlations between parent and child reports of fatigue.

Results: Rates of parent-reported anxiety, depression, fatigue, and executive dysfunction varied widely. Means were below average on the Trail-Making Test and average on Verbal Fluency and Digit Span, though scores varied widely. Various fatigue and emotional functioning indices—but not age of onset or disease duration—significantly correlated with various performance-based measures of executive functioning.

Conclusion: Results indicate pediatric MS is associated with some degree of fatigue, emotional difficulties, and executive dysfunction, the latter of which is associated with the two former. Notably, age of onset and disease duration did not significantly correlate with executive functioning. Results advance understanding of psychological and clinical variables related to neurocognitive outcomes in pediatric MS.     

Development of a measure of symptoms in chronic fatigue syndrome: The profile of fatigue-related symptoms(pfrs)

Abstract

Chronic fatigue syndrome (CFS) is a disorder of uncertain aetiology which attracts increasing research interest. This paper describes the development of a multidimensional measure incorporating the diverse symptoms associated with the illness. The Profile of Fatigue-Related Symptoms (PFRS) has four scales: emotional distress, cognitive difficulty, fatigue and somatic symptoms. These showed good convergence with comparison measures, high reliability and high internal consistency. CFS patients had markedly elevated scores compared with a student comparison group, and these scores correlated with indices of illness severity. The PFRS is a short and easily administered measure which, it is suggested, may be used to assess patients in terms of the severity and pattern of their disorder, to relate subjective symptoms to immunological and other findings, to evaluate the effects of treatments, and to compare the symptomatology of CFS with that in other fatiguing illnesses.     

‘An Association for All’—Notions of the Meaning of Autistic Self‐Advocacy Politics within a Parent‐Dominated Autistic Movement

In this paper, we seek to explore the tensions between advocacy and self advocacy autistic movements in a Swedish context with a special focus on the meanings that enable the production of particular understandings of autism and the autistic subject. Drawing on articles written for the Swedish advocacy magazine Empowerment written for and by people with autism, the discourse analysis explores two competing discourses: a reformist and a radical. The reformist discourse underlines a goal of (political) representation expressed in Empowerment. It may be understood as an important part of producing a legitimate autistic political subject–positioned as a full member, with a full membership–within a parent‐dominated autistic advocacy movement. The reformist discourse can be viewed as a result of a negotiation, where full membership is conditioned on the parents' terms and granted on specific terms. These include working together (neuro‐inclusively), advocacy based on interest rather than identity/position as a specific target/member group, agreement upon a definition of autism as a disability (a deficit) a person has rather than an identity. In relation to this, an alternative legitimate autistic subject is produced through invoking the counter‐hegemonic radical discourse. Such a narrative produces the ‘Asperger’ or ‘Aspie’. Here, the ‘full membership’ refers to a sense of identification with sense of belonging to and being at home with other people with autism. It contains a certain amount of autistic solidarity within the group of adults with autism. Copyright © 2014 John Wiley & Sons, Ltd.     

Taxonomy of moderators that govern explicit memory in individuals with intellectual disability: Integrative research review

This integrative research review aims to discover moderators that influence explicit memory performance of individuals with intellectual disability (ID). We reviewed 47 explicit memory studies (since 1990) that were conducted in populations with ID. We suggest a taxonomy of moderators related to the participants, encoding and retrieval stages, where only an interrelation between the three dictates memory performance. We found that individuals with nonspecific ID can achieve the same level of recognition as individuals with typical development (TD) with the same chronological age when all encoding moderators are favorable. Recognition tests facilitate recollection more than free recall in all etiologies. The performance of individuals with ID was poorer than that of individuals with TD in all auditory memory tasks. Spatial location memory varied with task demands, practice, intention, age and intelligence. We conclude with suggestions for further research and educational implications.     

Le point de vue des adultes avec une trisomie 21 sur leurs relations fraternelles et aux pairs extrafamiliaux : impact sur leur vie intrapsychique et intersubjective

This exploratory study concerns the sibling's bonds, and the bonds with extrafamilial peers, in the perspective of people with intellectual disability. Four adults with intellectual disability, who are siblings, are included in this research, associating a half-directive interview and the Family Apperception Test administration. The results signed the increased presence of positives affects. Identification and differenciation process are identified, but implied a work about the normality by the people with a disability. Finally a co-occurrence between the configuration of sibling system and of social bond is observed. This bond has to be studied, but before, researchers have to work on methodological aspects for this research.     

“Making it explicit” makes a difference: Evidence for a dissociation of spontaneous and intentional level 1 perspective taking in high-functioning autism

The ability of perspective taking is a fundamental aspect of social cognition. The ability to decide, what another person can or cannot see is referred to as “level 1 perspective taking.” This is thought to be a process that we can make use of intentionally, but which also takes place spontaneously. Autism is characterized by impairments of social interaction, which are thought to be related to deficits in implicit rather than explicit perspective taking. In order to assess both levels of processing with regard to perspective taking, we employed an established task in patients and controls. Our results demonstrate that both groups engage in spontaneous level 1 perspective taking. In contrast to controls, however, patients reacted more slowly if they had to verify the other’s as compared to their own perspective, which shows that participants with high-functioning autism have selective difficulties in explicit, but not implicit, level 1 perspective taking. These findings demonstrate that while spontaneous level 1 perspective taking appears to be intact in autism, this ability is impaired in patients when used explicitly.     

阻塞性睡眠呼吸暂停低通气综合征是引发道路交通事故的重要原因

为了分析我国道路交通事故是否与阻塞性睡眠呼吸暂停相关,以道路交通事故为主题查阅1993年~2012年万方数据库,并辅以手检同期《中华创伤杂志》和《中华流行病学杂志》,重点查阅全国性及地区性道路交通事故原因的论著,看其是否涉及阻塞性睡眠呼吸暂停问题。结果显示这期间共发表了相关论著43篇,全部论文在分析道路交通事故时均未提及阻塞性睡眠呼吸暂停这一重要原因,提示国内道路交通安全研究中忽略了一个与之关系密切的阻塞性睡眠呼吸暂停问题,建议今后将这个问题引入到道路交通安全管理项目中。     

腹内压的变化对肠道氧合及功能的影响

以胃黏膜pH值及血浆D-乳酸为监测指标,观察腹高压患者的腹内压变化前后胃肠道氧合及功能的变化。本研究提示胃黏膜pH值可以反映胃肠道的缺血,且早于腹腔间隙综合征出现,可敏感反映腹高压时肠道氧舍情况;血浆D-乳酸可反映肠缺血再灌注时肠屏障功能状态。以上观察为临床提供简便易行的监测手段及治疗思路。     

Long-term follow-up of internet-delivered exposure and mindfulness based treatment for irritable bowel syndrome

We conducted a follow-up of a previously reported study of internet-delivered cognitive behavior therapy (CBT) for IBS, based on exposure and mindfulness exercises (Ljótsson et al. (2010). Internet-delivered exposure and mindfulness based therapy for irritable bowel syndrome – a randomized controlled trial. Behaviour Research and Therapy, 48, 531–539). Seventy-five participants from the original sample of 85 (88%) reported follow-up data at 15–18 months (mean 16.4 months) after completing treatment. The follow-up sample included participants from both the original study’s treatment group and waiting list after it had been crossed over to treatment. Intention-to-treat analysis showed that treatment gains were maintained on all outcome measures, including IBS symptoms, quality of life, and anxiety related to gastrointestinal symptoms, with mainly large effect sizes (within-group Cohen’s d = 0.78–1.11). A total of fifty participants (59% of the total original sample; 52% of the original treatment group participants and 65% of the original waiting list participants) reported adequate relief of symptoms. Improvements at follow-up were more pronounced for the participants that had completed the full treatment and maintenance of improvement did not seem to be dependent on further treatment seeking. This study suggests that internet-delivered CBT based on exposure and mindfulness has long-term beneficial effects for IBS-patients.