SEND Research

Autism

This is a review of the available research into the effect of exercise on various behaviors in children with Autism Spectrum Disorder (ASD).  These behaviors include cognition and attention, stereotypic behaviors and social-emotional behaviors.  This article analysed the results of a number different research papers and overall they found that interventions involving horse riding, swimming, martial arts, jogging and yoga/dance can lead to improvements in behavior, with martial arts and horse riding giving the greatest benefits in these studies.  Further research is needed to fully understand the impact that exercise can have on behavior in children with ASD and to assess the most effective types of exercise, duration and frequency of intervention and method of delivery of intervention.

Published by: Sage

Read the whole article here: http://journals.sagepub.com/stoken/default+domain/s9aH7fnMJ29xhqdjA986/full

Emily Bremer, Michael Crozier, Meghann Lloyd

Vol 20, Issue 8, pp. 899 – 915 First published date: January-28-2016

Autism Journal

This report attempts to gather an evidence profile for the advantages of behavioural therapies on autistic spectrum young people suffering with anxiety symptoms. It argues that whilst the links between mitigating anxiety and such therapies might appear self-evident and logical, it proceeds from the standpoint of wanting the value of such therapies, which is achieved by assessing the progression of 32 cases of young people suffering with autism-derived anxiety.

It finds greater-than-expected change in cases of anxiety, and the article subsequently argues that cognitive-behavioural therapy is a treatment that should be allowed to gain momentum. Whilst this is a review of the value of this approach, the article is throughout aware of the fact that in many cases alternative methods are not available, and that it is a method that can seldom do harm.

Authors: Robert R Selles, Elysse B Arnold, Vicky Phares, Adam B Lewin, Tanya K Murphy and Eric A Storch, Article first published online: 12 JUN 2014.

Publisher: Sage Journals. 
Volume 19, Issue 5, pages 613–621, July 2015.

• Read the article abstract here.
• Read the article PDF here.

Autism

This paper aimed to look at the role cognitive processes play in imagination in both autistic and neurotypical children by examining imaginative drawings by the children.  The authors found that there were different associations between cognitive abilities and imagination with younger and older children and that autistic children use different cognitive strategies when creating imaginative drawings than neurotypical children do.

Published by: SAGE.

Read the whole article here:http://journals.sagepub.com/stoken/default+domain/AugOctPatientINFORM5/full

Kayla D Ten Eycke, Ulrich Müller, Autism, First published date: November-08-2016, 10.1177/1362361316668293

Autism

Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom

Introduction

The aim of this research was to obtain professional opinions of the autism spectrum disorder (ASD) diagnosis process in the UK.  116 professionals involved in the diagnosis of ASD in the UK were asked their views of accessibility, the diagnostic process and post-diagnostic support.

The overall findings were that the most professionals were satisfied with accessibility yet around 40% of services were failing to provide timely assessments.  The majority of professionals also reported the standard tests to be useful but there was concern about how useful they were in detecting atypical ASD (e.g. in females). Less than half of the professionals surveyed reported being able to offer post-diagnostic follow-up support sessions (as recommended by NICE).  There was also dissatisfaction with post diagnostic provision and a feeling that service improvements were needed for most age groups.

Claire L Rogers, Lorna Goddard, Elisabeth L Hill, Lucy A Henry and Laura Crane.   Article first published online: 16 December 2015

Publisher: Sage

Autism October 2016 vol. 20 no. 7 820-831

http://aut.sagepub.com/content/20/7/820.full.pdf+html (PDF link)

http://aut.sagepub.com/content/20/7/820.abstract (Abstract link)

Nature Reviews Neuroscience

This article is a comprehensive detailed review of current research into the role of the immune system in the development of autistic spectrum disorder (ASD). There are a number of ASD associated genes and many encode components of the immune system. There are also a number of environmental risk factors for ASD many of which are mediated via the immune system. The authors end by raising the possibility of future treatment of some of the symptoms of ASD by targeting immune function.

Published by: Springer Nature

Read the whole article here: http://rdcu.be/l7yg

Nature Reviews Neuroscience. Volume: 16, Pages 469–486 Year published: (2015) doi:10.1038/nrn3978 Published online 20 July 2015 Nature Reviews Neuroscience Myka L. Estes, A. Kimberley McAllister

 Autism

Onset of maternal psychiatric disorders after the birth of a child with autism spectrum disorder: A retrospective cohort study

This research paper looks at the incidence of mental health problems in mothers with a child with autistic spectrum disorder (ASD) and Learning Disability (LD), with a child with ASD and no LD and to compare this with mental health problems in mothers with a typically developing child.

The team analysed medical data from over 250,000 women in Western Australia and found that of the three groups, overall, mothers with children with ASD and no LD were most likely to suffer with mental health problems.  They suggest that in view of their findings more support and interventions are put in place for mothers with children diagnosed with ASD.

Publisher: Sage

Jenny Fairthorne, Peter Jacoby, Jenny Bourke, Nick de Klerk and Helen Leonard, Article first published online: 4 February 2015, Autism January 2016 vol. 20 no. 1 37-44,

http://aut.sagepub.com/content/20/1/37.full.pdf+html (PDF link)

http://aut.sagepub.com/content/20/1/37.abstract (Abstract link)

Autism

Plugged in: Electronics use in youth and young adults with autism spectrum disorder

The paper aimed to look at both the benefits and problems with electronics use in young people with an autism spectrum disorder and compare this with electronic use in young people without autism.

The data was collected using an online survey of parents in the USA and Canada.  Young people with ASD appeared more likely to use certain electronics and electronics use appeared to be significantly more likely to have a negative impact on young people with ASD than with children without ASD.  In conclusion the authors suggest that more research is needed to support families of young people with ASD to manage electronics usage to avoid problems.

Publisher: Sage

Link to article: http://aut.sagepub.com/content/20/1/45.full.pdf+html

Link to abstract: http://aut.sagepub.com/content/20/1/45.abstract?rss=1

Authors: Jennifer A MacMullin, Yona Lunsky and Jonathan A Weiss, Article first published online: February 18^th 2015, Autism January 2016 vol. 20 no. 1 45-54

Clinical Child Psychology and Psychiatry

Separating ‘emotion’ from ‘the science’: Exploring the perceived value of information for parents and families of children with autistic spectrum disorder

With the diagnosis of autistic spectrum disorders (ASDs) on the increase, it is the position of this report that information, and the management of it, is an essential part of managing an ASD within a family context. This analysis deploys the use of focus groups, with candidates either with a personal and/or professional interest in ASDs, to assess the central issues of information dialogue.

The central themes exhumed were the value of particular information sources (i.e. accessible to the non-professional), the potential vulnerabilities of families and the need for evidence. The report argues therefore that information must be managed carefully and with close reference to perceived familial vulnerabilities. The effect of practicalities, such as fatigue or time constraints are also accentuated.

Authors: Michelle O’Reilly, Khalid Karim and Jessica Nina Lester, Article first published online: 14 APR 2014

Publisher: Sage Journals.
Volume 20, Issue 3, pages 500-514, July 2015

Read the article abstract here.

Read the article PDF here.

Autism

An investigation into the reasons behind why girls without intellectual disability are diagnosed with Autistic Spectrum Disorder (ASD) less often and later than boys.  A survey of carers of 92 boys and 60 girls living in Australia who were diagnosed with ASD after they started school was taken.  The survey asked caregivers what the children were like before they started school and compared the results for the boys and the girls.  Girls were found to use different strategies to cope with social situations (mimicking/imitation was more commonly seen in girls, isolating/withdrawal much less common in girls).  Interestingly the girls were more likely to exhibit externalized behavior than the boys.  This study is helpful in increasing understanding of why it may be more difficult to diagnose ASD in girls than boys.

planning for the affected children.

Published by: Sage

Read the whole article here:http://journals.sagepub.com/stoken/default+domain/YsSAq7bEj58F7bhvc82u/full

Rachel M Hiller, Robyn L Young, Nathan Weber

Autism Vol 20, Issue 1, pp. 75 – 84 10.1177/1362361314568899

Autism Journal

Managing social interactions within the college/university environment can prove challenging for those with austistic spectrum disorders, but equally the reactions and responses of other peers can be important in making progress. Mark Brosnan and Elizabeth Mills' report seek to explore the effects of diagnostic labels in situations of social interaction. Do such labels explain the situation to peers or rather act to isolate individuals?

This report analyzes the responses of higher education students after reading fictitous scenarios, some of which include diagnostic labels and some that don't. The report argues that the way in which it fails to find a link between poor prior knowledge of autism and a more negative reaction might suggest that attitudes towards mental health have improved among the general public more broadly.

Authors: Mark Brosnan and Elizabeth Mills, Article first published online: 4 JUN 2015

Publisher: Sage Journals / National Autistic Society

• Read the article abstract here.

Autism

An interesting paper where 82 Australian women with high functioning autism were asked about their experiences of education, employment, health, social and community activities.  The results were analysed and compared with the experiences of both the general population and of men with high functioning autism.

Interestingly they found little difference between the experience of the men and the women involved in the study.  The women in the study had high levels of mental health difficulties as compared to the non-autistic population and were less likely to be employed.  They also had experienced a lack of support in educational and employment settings.  The study highlights the negative effect of not receiving a diagnosis early on, demonstrating a need for earlier diagnosis of high functioning autism in girls.

Published by: Sage

Read the whole article here: http://eprints.nottingham.ac.uk/39721/

Susanna Baldwin, Debra Costley, Autism Vol 20, Issue 4, pp. 483 – 495, First Published June 25, 2015

Autism

Theory of mind is the understanding that other people have a mind (thoughts, emotions, beliefs etc..) different to our own.  Many individuals with autism have difficulties with theory of mind.  This research involved testing theory of mind in 62 South African children with ASD (autistic spectrum disorder) between the ages of 8 and 16.

The authors were able to separate the participants into three clusters depending on their theory of mind scores and these clusters corresponded to the participants having severe, moderate or mild ASD.  The results suggested that theory of mind may be a useful indicator of the severity of the individual’s autism and may be helpful in determining the level of support that the child requires.

Published by: Sage

Read the whole article here: http://journals.sagepub.com/stoken/default+domain/AugOctPatientINFORM1/full

Michelle Hoogenhout and Susan Malcolm-Smith DOI: 10.1177/1362361316636758 Autism

Vol 21, Issue 2, pp. 242 - 252

The Lancet Neurology, Volume 13, No. 3, p330–338, March 2014

Neurodevelopmental disabilities, including autism, attention-deficit hyperactivity disorder, dyslexia, and other cognitive impairments, affect millions of children worldwide and some diagnoses seem to be increasing in frequency. Industrial chemicals that injure the developing brain are among the known causes for this rise in prevalence.

In 2006, the study authors did a systematic review and identified five industrial chemicals as developmental neurotoxicants: lead, methylmercury, polychlorinated biphenyls, arsenic, and toluene. Since 2006, epidemiological studies have documented six additional developmental neurotoxicants—manganese, fluoride, chlorpyrifos, dichlorodiphenyltrichloroethane, tetrachloroethylene, and the polybrominated diphenyl ethers. We postulate that even more neurotoxicants remain undiscovered.

To control the pandemic of developmental neurotoxicity, we propose a global prevention strategy. Untested chemicals should not be presumed to be safe to brain development, and chemicals in existing use and all new chemicals must therefore be tested for developmental neurotoxicity. To coordinate these efforts and to accelerate translation of science into prevention, we propose the urgent formation of a new international clearinghouse.

• Dr Philippe Grandjean, MD^{a, b, ,} ,
• Philip J Landrigan, MD^c 
• ^aDepartment of Environmental Medicine, University of Southern Denmark, Odense, Denmark; ^b Department of Environmental Health, Harvard School of Public Health, Boston, MA, USA; ^c Icahn School of Medicine at Mount Sinai, New York, NY, USA

• Link to Article: The Lancet
• Link to pdf Neurobehavioural effects of developmental toxicity

NOTE: This review received a mixed reaction from other scientists as you can see from this link but it is important to read and consider the evidence, reaction and implications for yourself

TWO CLICKS FORWARD AND ONE CLICK BACK- Report on children with disabilities in the digital environment (2019)

Journal of Pediatric Nursing

This report assesses the implications of a chronic, long-term medical condition from the perspective of a child. Through evaluating cases of varied conditions of children aged between 8-13, Barbara Beacham and Janet Deatrick seeks how best to manage chronic conditions within the contexts of family and childhood.

A central thread of this report argues the central importance of the child's views on condition management at a school age where they are growing in awareness as to the nature of their condition. Routines are argued as an important way of combining a child's need for consistency and clarity, with a family's need for manageability. Finally the report evaluates how best to involve a child in future planning, and how to inform them about the long-term implications of their condition.

Author: Barbara L. Beacham and Janet A. Deatrick, Article first published online: 10 NOV 2014

Publisher: ScienceDirect. 
Volume 30, Issue 1, Pages 25–35, January–February 2015

• Read the article here.

The Journal of Pediatrics

This study investigated the relationship between hypermobility and musculoskeletal pain (MSP) in a group of 1584 Australian teenagers.  They assessed each participant for generalised joint hypermobility (GJH) based on having a Beighton score of 4 or more or 6 or more.  They also asked participants to self report MSP occurring in the last month, lasting over 3 months and made worse by sport.

The authors found the prevalence of GJH to be 60.6% for girls and 36.7% in boys when their Beighton score was 4 or more and 26.1% for girls and 11.5% for boys when the Beighton score was 6 or more.  A link between higher socioeconomic status and GJH was seen in girls. In boys having GJH was associated with having a lower body mass index.  There was also an association between GJH in boys (with a Beighton score of 6 or more) and some of the reported pain.

Published by Elsevier.

Read the whole article here:http://www.sciencedirect.com/science/article/pii/S0022347616310447?showall%3Dtrue%26via%3Dihub

Susan L. Morris, Peter B. O'Sullivan, Kevin J. Murray, Natasha Bear, Beth Hands, Anne J. Smith, Hypermobility and Musculoskeletal Pain in Adolescents, The Journal of Pediatrics, Volume 181, 2017, Pages 213-221.e1, ISSN 0022-3476, https://doi.org/10.1016/j.jpeds.2016.09.060.

The Journal for Nurse Practitioners

This a short article describing Joint Hypermobility Syndrome (JHS) and its diagnosis and treatment.  It is aimed at nurses and explains the criteria for diagnosis (having an unusually large range of movement in joints which is usually only diagnosed after the age of 5) and how pain is often associated with the condition.

Treatment for JHS is discussed and depends on the individual patient.  Some patients will need medication to manage the pain, thought needs to be given to the psychological effect of the pain as well as its impact on the patient’s quality of life.  Physical and Occupational Therapy may be given in the form of exercises to protect joints and to prevent injury.  In some cases a referral to a Rheumatologist or Geneticist may be needed.

Published by:Elsevier

Read the whole article here: http://www.sciencedirect.com/science/article/pii/S1555415516304366?showall%3Dtrue%26via%3Dihub

The Journal for Nurse Practitioners , Volume 13 , Issue 2 , e101 - e102

DOI: http://dx.doi.org/10.1016/j.nurpra.2016.08.002

A. Richmond and B. Nelson.

Pacing and Clinical Electrophysiology

This article reports the effect of Ivabradine, a drug which lowers heart rate without effecting blood pressure, on postural tachycardia syndrome (POTS).  There are a number of treatments for POTS which usually involve both lifestyle changes and medication.   No single treatment works for all patients and often patients try a number of different treatments before finding something that works.

The study involved 49 patients, of these 38 reported improvement in symptoms whilst taking Ivabradine.  In the patients tested, Ivabradine was shown to significantly lower heart rate both when sitting and standing without effecting blood pressure.   The majority of patients in the study reported an improvement in their symptoms which included palpatations and light-headedness.  Notably no one involved in the study stopped the medication due to side effects.

Published by: Wiley.

Read the whole article here: http://onlinelibrary.wiley.com/doi/10.1111/pace.13182/full

Ruzieh, M., Sirianni, N., Ammari, Z., Dasa, O., Alhazmi, L., Karabin, B. and Grubb, B., 2017. Ivabradine in the treatment of postural tachycardia syndrome (POTS), a single center experience. Pacing and Clinical Electrophysiology.

General Hospital Psychiatry

This study aimed to find out whether having joint hypermobility syndrome (JHS) increases the risk of developing anxiety disorders.  They recruited 158 people from a village in Spain who were part of a larger long term study.  These people were assessed at age 16-20 and again 15 years later for JHS and various types of anxiety disorder (only 137 remained suitable for the study after 15 years).  This allowed the authors to look at development of anxiety disorders over 15 years in people with and without JHS.

The authors found that, in the population they studied, people with JHS were significantly more likely to have panic/agoraphobia disorder or social phobia than people without JHS.  People with JHS were also four times more likely to take anti-anxiety medication than the control group.

Published by: Elsivier.

Read the whole article here: http://www.sciencedirect.com/science/article/pii/S0163834311001113

Antoni Bulbena, Jordi Gago, Guillem Pailhez, Lili Sperry, Miquel A. Fullana and Oscar Vilarroya.  General Hospital Psychiatry Volume 33, Issue 4, July–August 2011, Pages 363-370

doi.org/10.1016/j.genhosppsych.2011.03.004

Genetics in Medicine

This paper reports the use of next-generation sequencing to identify the different gene variants causing Ehlers-Danlos syndrome in a group of 177 patients. Next-generation sequencing (NGS) is quicker and cheaper than conventional genetic sequencing and allows large amounts of DNA to be sequenced at once.
Using NGS the authors identified new molecular diagnoses in some patients. The authors conclude that, due to the advantages of genetic testing using NGS, it could be used earlier in the diagnostic process.

Published by: Springer Nature
Read the whole article here: http://rdcu.be/l7yv
Genetics in Medicine Volume 18, Number 11, 1119-1127 (2016) Article first published online: 24 March 2016 Ruwan A. Weerakkody, Jana Vandrovcova, Christina Kanonidou, Michael Mueller, Piyush Gampawar, Yousef Ibrahim, Penny Norsworthy, Jennifer Biggs, Abdulshakur Abdullah, David Ross, Holly A. Black, David Ferguson, Nicholas J. Cheshire, Hanadi Kazkaz, Rodney Grahame, Neeti Ghali, Anthony Vandersteen, F. Michael Pope & Timothy J. Aitman.

Child Abuse & Neglect Journal

Abstract

American Journal of Medical Genetics partC seminars in Medical Genetics.

Common skin and bleeding disorders that can potentially masquerade as child abuse

 Introduction

This review documents a number of skin and bleeding disorders that can be mistaken for child abuse.  There is a detailed analysis of each condition and how it mimics child abuse.  The review cites a study of 2890 children evaluated for physical abuse reported that almost 5% of the children presented with physical abuse mimic.  There is a detailed discussion of a variety of skin and bleeding disorders which can present as suspected child abuse.  Skin lesions and bruising from child abuse is compared and contrasted to that seen in a variety of skin and bleeding disorders to aid clinicians in diagnosis.  The reviewer concludes that clinicians investigating child abuse need to be open minded in their diagnosis but must also not rule out child abuse in children with skin and bleeding disorders as the two can exist in the same child at the same time.

Publisher: Wiley Online Library

Bhavita Patel and Rebecca Butterfield, Article first published online: 26 OCT 2015, American Journal of Medical Genetics partC seminars in medical Genetics Volume 169, Issue 4.

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31462/pdf  (PDF Text Link)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31462/abstract (Abstract Link)

 Clinical Pediatrics

This study involved 33 young people aged 11-18 with postural orthostatic tachycardia syndrome (POTS).  The 33 patients and their parents were put on an intensive 3 week outpatient rehabilitation program with the aim to improve the level of functioning of the patients, not to resolve POTS.

They found that the young people who had undertaken the program showed significant improvements in overall functional ability as well as a significant reduction in psychological distress.  As the authors note, the findings show immediate positive results but further follow up over time is needed to see the long term effects of the program.

Published by: SAGE journals

Read the whole article at : http://journals.sagepub.com/doi/pdf/10.1177/0009922816638663

 Volume: 55 issue: 14, page(s): 1300-1304 Article first published online: March 15, 2016; Issue published: December 1, 2016 DOI: https://doi.org/10.1177/0009922816638663

Barbara K. Bruce, PhD¹Bruce.Barbara@Mayo.edu, Tracy E. Harrison, MD¹, Susan M. Bee, CNS¹, Connie A. Luedtke, RN¹, Co-Burn J. Porter, MD¹, Philip R. Fischer, MD¹, Sarah E. Hayes¹, Daniel A. Allman¹, Chelsea M. Ale, PhD¹, Karen E. Weiss, PhD¹

Seminars in Pediatric Neurology

This is a review of the relevant literature about Juvenile Fibromyalgia and includes details of both what the condition is and the various treatments for it.  The authors explain how the pain processing system works and that Juvenile Fibromyalgia is a disorder of the pain processing system.  They also discuss the diagnosis criteria for Juvenile Fibromyalgia and which conditions are associated with it.  Finally there is a list of different medications that may be used to treat the various symptoms of Juvenile Fibromyalgia with details of how the medications are used and possible side effects.

Published by: Elsevier.

Read the whole article here: http://www.sciencedirect.com/science/article/pii/S1071909116300286?showall%3Dtrue%26via%3Dihub

Juvenile Fibromyalgia: A Primary Pain, or Pain Processing, Disorder, Seminars in Pediatric Neurology, Volume 23, Issue 3, August 2016, Pages 231-241, Lawrence Zemel, Peter R. Blier

Seminars in Pediatric Neurology

This article is a review of the commonly used medications for chronic pain in children and young people.  It lists several types of medications along with which type of pain the medication is useful for, the dose and any side effects.  The authors discuss the mechanism of action of the different drugs and any available evidence for the effectiveness of the medication in the treatment of chronic pain.

Published by: Elsevier.

Read the whole article here: http://www.sciencedirect.com/science/article/pii/S1071909116300250?showall%3Dtrue%26via%3Dihub

Seminars in Pediatric Neurology, Volume 23, Issue 3, August 2016, Pages 209-219

Eapen Mathew, Eugene Kim, William Zempsky

Journal of Pediatric Gastroenterology & Nutrition:

October 2015 - Volume 61 - Issue 4 - p 512
doi: 10.1097/01.mpg.0000472212.40680.46

Social concerns in children being investigated for chronic intestinal pseudo-obstruction

J, Brind1; E, Bowring1; K, Larmour1,2; H, Cronin1; L, Barkley2; A, Rybak1; E, Saliakellis1; KJ, Lindley1; O, Borrelli1; N, Thapar1

Read article: [Awaiting opening]

http://journals.lww.com/jpgn/Abstract/2015/10000/OP_8_SOCIAL_CONCERNS_IN_CHILDREN_BEING.34.aspx

J, Brind1; E, Bowring1; K, Larmour1,2; H, Cronin1; L, Barkley2; A, Rybak1; E, Saliakellis1; KJ, Lindley1; O, Borrelli1; N, Thapar1

Disease in Childhood Journal

Medical geneticists M. J. Wright and M. D. Irving offer a developmental assessment of the implication of achondroplasia in this wide-ranging study. Wright and Irving discuss a broad range of observable developments including:

• Early stage care, including diagnosis
• Normal developments with the condition
• Complications
• Neurological and respiratory issues
• Practical and emotional support
• Transitional care

Authors: M. J. Wright, M. D. Irving, Article first published online: 3 APR 2011

Publisher: BMJ Journals. 
Volume 97, Issue 2, pages 129-134, February 2012

[PENDING OPENING - CHECK BACK SOON]

• Read the article abstract here.
• Read the article PDF here.

Clinical Pediatrics

This study involved 33 young people aged 11-18 with postural orthostatic tachycardia syndrome (POTS).  The 33 patients and their parents were put on an intensive 3 week outpatient rehabilitation program with the aim to improve the level of functioning of the patients, not to resolve POTS.

They found that the young people who had undertaken the program showed significant improvements in overall functional ability as well as a significant reduction psychological distress.  As the authors note, the findings show immediate positive results but further follow up over time is needed to see the long term effects of the program.

Publisher: SAGE journals

Barbara K. Bruce, Tracy E. Harrison, Susan M. Bee, Connie A. Luedtke, Co-Burn J. Porter, Philip R. Fischer, Sarah E. Hayes, Daniel A. Allman, Chelsea M. Ale,  and Karen E. Weiss, Article first published online: 15 March 2016, Clinical Pediatrics 2016, Vol. 55(14) 1300 –1304

http://cpj.sagepub.com/content/55/14/1300.full.pdf+html (PDF link)

http://cpj.sagepub.com/content/55/14/1300.abstract (Abstract link)

Rheumatology International

This study looked at the link between Ehlers-Danlos syndrome (EDS) and psychiatric disorders in a study involving 106 adult EDS patients in Canada.  The authors found that EDS patients were twice as likely to have a psychiatric disorder than the general population were.  Depression and anxiety were the most common disorders diagnosed in patients with EDS.  ADHD was found to be more common in patients with EDS than in the general population, something that has been noted before in children with EDS.

Pain symptoms were experienced by 89% of the patients in the study and the presence of any pain symptoms or fatigue was significantly associated with having a psychiatric disorder.   The authors conclude that research indicates that psychiatric disorders are a feature of EDS and that there is a need for screening for these disorders in EDS patients.

Published by: Springer

Read the whole article here: http://rdcu.be/rbuT

Hershenfeld, S.A., Wasim, S., McNiven, V. et al. Rheumatol Int (2016) 36: 341. doi:10.1007/s00296-015-3375-1

Disability and Health Journal

This wide-ranging review of studies of parental needs dating between 1990-2014, finds numerous unmet needs for parents with children with rare conditions. These issues range through a lack of emotional support, poor communication on the part of medical professionals and the more specific needs to mitigate stress, pressure and anxiety. Using the Supportive Care Needs Framework (SCNF) as a reference, this comprehensive study finds a great deal of inefficiencies in the current support levels.

However although this report finds that in many cases the standards of the SCNF is not met, the report argues that the SCNF is itself not an ambitious enough standard of well-being for parents, and that in reality, parental needs require substantial further research and review.

Authors: Lemuel J. Pelentsov, Thomas A. Laws, Adrian J. Esterman, Article first published online: 7 APR 2015

Publisher: ScienceDirect, April 2015.

Article url:       http://www.disabilityandhealthjnl.com/article/S1936-6574(15)00045-X/abstract#/article/S1936-6574(15)00045-X/abstract  

Article DOI:    10.1016/j.dhjo.2015.03.009

Rheumatology International

The authors assessed 45 patients with Joint Hypermobility Syndrome/Ehlers-Danlos syndrome hypermobility type (JHS/EDS-HT) for a number of psychiatric disorders and compared the results to a control group.  They found that patients with JHS/EDS-HT were more likely to have a psychiatric disorder than the control group.  In particular the occurrence of Obsessive Compulsive Personality Disorder in JHS/EDS-HT patients was found to be 5 times higher than in the control group.  Further research is needed to confirm these results and to investigate the reasons for the higher rate of psychiatric disorders in patients with JHS/EDS-HT.

Published by: Springer

Read the whole article here: http://rdcu.be/rbu2

Massimo Pasquini, Claudia Celletti, Isabella Berardelli, Valentina Roselli, Simona Mastroeni, Marco Castori, Massimo Biondi, Filippo Camerota.

Rheumatol Int (2014) 34: 631. doi:10.1007/s00296-013-2901-2

Journal of Pediatric Nursing

Rare diseases pose an intimidating challenge for both families and medical professionals: they are inherently subject to shortages of information and medical expertise. Adriana Glenn acknowledges that in too many situations, this places immense strain on the family sphere; in many cases the mother especially. However Glenn notes that increasingly online communication methods are allowing mothers to manage their struggles and collectively pool their experience.

This study is built on a series on interviews with 16 mothers of children with the rare Alagille syndrome. It concludes that the "e-Health" environment has great potential to improve the coping strategies of families in the situations rare conditions impose. Through her interviews Glenn notes that themes of connectedness and empowerment make online communication "essential" to the rare disease community. Moreover Glenn argues that the success of the internet is a result of inadequate emotional support for mothers, and that support in accessing the correct online materials could help the situation further.

Author: Adriana D. Glenn, Article first published online: 13 SEP 2014

Publisher: ScienceDirect
Volume 30, Issue 1, Pages 17–24, January–February 2015.

• Read the article here.

British Journal of Special Education

Inclusive special education: development of a new theory for the education of children with SEND

Garry Hornby argues that cultural evolution is required if SEND outcomes are to be improved, in this thoroughly visionary thesis. He argues that answer to improving educational outcomes is not inclusive education, nor special education (two approaches Hornby argues are increasingly contrasting), but inclusive special education.

Hornby's strategic theory of SEND teaching amalgamates the the philosophy, values and practices of inclusive education with the interventions, strategies and procedures of special education. The ambition is to achieve support without isolation, a social experience without endangering the child's medical needs. Hornby hopes to influence future policy, and represent a model for teaching strategy.

Authors: Garry Hornby, Article first published online: 18 JUN 2015

Publisher: Wiley Online Library. 
Article available on Researchgate

Read the article  here.

British Journal of Learning Disabilities

Network Training is an intervention that involves getting all people involved in supporting an individual with learning disabilities together with the aim to promote positive change.  In this case study, network training involved getting the all adults involved in supporting the child together to increase understanding of his challenging behavior and to work out how to promote resilience both in the child and those around him and to make plans to move forward.

The effect of the Network Training was investigated using questionnaires completed both before and after the training.  Overall in this case, Network Training was found to be effective in increasing the adults involved knowledge and understanding of the child and his behavior in the short term at least.

Published by: Wiley

Read the whole article here: http://onlinelibrary.wiley.com/wol1/doi/10.1111/bld.12156/full

Kate Cooper and Jennifer McElwee, British Journal of Learning Disabilities, Volume 44, Issue 4, pages 337–344, December 2016

British Journal of Special Education

This reports observes the distribution of statemented SEN placements in secondary schools, and how this varies across academies (both "sponsored" - often failing schools that are coerced into the academy model - and "converter" academies - those that chose to convert towards an academy system), mainstream schools, technical colleges and the newly created free schools. Brahm Norwich and Alison Black assess the enrolment data for both the 2013/4 and the 2014/5 academic years.

They find that converter academies possess a markedly smaller percentage of statemented students versus sponsored academies or schools still under local authority control. Sporadically, free schools can sometimes possess unusually large numbers of statemented students, which is something Norwich and Black discuss in relation to the observed greater likelihood of inclusiveness in smaller schools.

Authors: Brahm Norwich and Alison Black, Article first published online: 3 JUN 2015

Publisher: Wiley Online Library. [Awaiting opening, please check back soon!]
Volume 42, Issue 2, pages 128–151, June 2015

Read the article abstract here.

Disability and Health Journal

Disabilities make individuals more susceptible to lapses in health and degradation of condition, and it is viewed as essential by this report to improve the preventative methods that are currently in use. This report assesses the effects and viability of one technique in particular: an assigned student wellness coach. On the surface of things, twinning a student pre-healthcare worker with a disabled person seems likely both to improve preventative care and provide experience to future clinical healthcare professionals: this research paper sought to affirm this logic with a trial program.

This study analyzes the effects of a three month program in which 32 student wellness coaches, aged between 19 and 23, attended the needs of 15 people with disabilities aged between 28 and 74. The study observes weight loss in the disabled participants, greater functionality, fitness and universal satisfaction with the program. Overall the study notes that this trial demonstrated a great deal of benefit and feasibility.

Authors: Hui-Ju Young, Melissa L. Erickson, Kristen B. Johnson, Mary Ann Johnson, and Kevin K. McCully, Article first published online: 12 MAR 2014

Publisher: Disability & Health Journal, ScienceDirect.
Volume 8, Issue 3, Pages 345–352, July 2015

• Read the article here.

Pediatric Research

This reports represents one of the largest observations of pediatric acupuncture outcomes of recent years, and comes in response to an increased prominence in the usage of acupuncture in pediatric health care. The authors draw from 24 systematic reviews, comprising of 142 randomized controlled trials with 12,787 participants - albeit only a fraction of these trials are actively used in forming conclusions.

Outcomes are assessed in a huge variety of conditions, ranging from myopia, through cerebral palsy, to mumps. Overall, the report does not find evidence of marked improvements to condition, although some improvements are found in some cases, such as cerebral palsy and tic disorders, and conversely, acupuncture is only found to cause harm in a very same number of cases.

Authors: Chunsong Yang, Zilong Hao, Ling-Li Zhang and Qin Guo, Article first published online: 17 JUN 2015

Publisher: Nature Publishing Group. 
Volume 78, Issue 2, pages 112–119, August 2015

Read the article here.

The Institute for Movement Therapy and School for ‘Conductors’

This report describes how it is possible for Prof. Petö, at the Institute for Movement Therapy and School for ‘Conductors’ in Budapest, to combine, in the hands of one person, the treatment, education and management of a child with cerebral palsy by using the method of ‘Rhythmical Intention’.

In this way, 4–5 hours of physical treatment a day can be combined with several hours of academic and general teaching, thus educating the children up to the normal standard of the Hungarian schools. After 2–3 years' residential care the children are returned to their parents and are expected to attend normal school. All cases are severe, but hardly any calipers or operations are used, the approach being neurophysiological.

Author: Ester Cotton MCSP. 1965, Article first published online: 12 NOV 2008

Publisher: Developmental Medicine & Child Neurology. 
Volume 7, Issue 4, pages 437–446, August 1965

Read the article abstract here: http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.1965.tb08241.x/abstract

Read the article PDF here: http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.1965.tb08241.x/pdf

The American Journal of Medical Genetics

This report argues that mutual respect should structure the relationship between geneticists and the parents of children with undiagnosed conditions. A panel of three mothers is interviewed as geneticists seek to improve the productivity of their discussions with families. The two main themes examined are those of respect and language. In terms of the latter, the article argues the need successfully to balance easy-to-understand language with the need to express the full extent of the medical situation. It subsequently advises the importance of people skills in overcoming this trade-off.

However, perhaps the most central point the report makes is the need to respect the parent's own knowledge and research of their child's situation. It subsequently makes the profound point that case comparison cannot be fully helpful in such scenarios.

Author: American College of Medical Genetics and Genomics (ACMG), Article first published online: 15 NOV 2015
Publisher: Developmental Medicine & Child Neurology. Opened up at request from SNJ via patientINFORM partnership

Volume 167, Issue 7, pages 8-9, July 2015.

• http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.37196/abstract
• Access the pdf here: http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.37196/pdf

[Editor's note: Our SNJ columnist and Just Bring The Chocolate blogger, Renata Blower, was recently instrumental in launching the first dedicated nursing role for undiagnosed children at the Great Ormond Street Hospital, funded by the Roald Dahl's Marvellous Children's Charity ]