Particpants Needed for Pituitary Conditions Study

Particpants Needed for Pituitary Conditions Study

Understanding the Needs of Children with Pituitary Conditions

Dr Alyson Norman from the University of Plymouth and Dr Sue Jackson from the University of the West of England are looking for participants in a study of children and young people with pituitary conditions.

Primarily, the research aims to investigate the psychological and social functioning of children who have a pituitary condition. The study is focused on individual’s aged between 10-25 and their experiences socially, mentally and physically, their level of decision making in their care and their transition from paediatric based care to adult care. They hope that by conducting this research they will gain an insight into the difficulties that can occur when living with a pituitary condition, help health professionals to better understand their patient’s needs and guide intervention development. They also hope that the information they gain from this research will help young individuals living with a pituitary condition to feel they are able to self-manage their condition, feel empowered and in charge of themselves for the rest of their lives.

If you or your child would be interested in taking part in this study, please contact Dr Norman for more information at:  alyson.norman@plymouth.ac.uk.

Particpants Needed for Pituitary Conditions Study

Recruits Needed for Sensory Profile Study

New project: Sensory profiles in rare genetic syndromes

Researchers at the University of SheffieldWe are currently recruiting parents/caregivers of children (aged 3 – 14 years) with a diagnosis of either Sotos syndrome or Tatton-Brown Rahman syndrome (TBRS) to take part in an exciting new research study.

Their previous research with these syndromes has indicated that sensory processing difficulties may be problematic for some children but this has not yet been explored in detail. They are therefore interested in finding out whether there are specific aspects of sensory processing that are common in either of these syndromes and whether these may be associated with other behaviours, such as anxiety and autistic traits. They hope that this research will provide important information regarding sensory processing difficulties in both Sotos syndrome and TBRS which can then be used to help reduce and manage these difficulties, as well as identifying specific behaviours which may occur as a result of sensory processing difficulties.

Taking part in the study involves completing a few questionnaires regarding your child’s sensory processing and associated behaviours. These can either be completed online or hard copies can be sent via the post.

All individuals who participate in the study will receive individualised feedback regarding their child’s sensory profile. If anyone is interested in finding out more about the study or would like to participate, please get in touch with Chloe Lane: chloe.lane@sheffield.ac.uk

New Blue Badge Rules

New Blue Badge Rules

New Blue Badge rules in England to came into force on 30 August 2019

Last year the government announced its intention to expand the blue badge rules in England to make it easier for people with hidden disabilities such as autism to qualify. However, no date was provided for these new rules coming into force.
Now the government has published regulations confirming that these new rules will start to apply from the 30 August 2019.
As a result of the consultation, automatic entitlement to the Blue Badge will be extended to those in England who score 10 points under the Personal Independence Payment (PIP) mobility test of being “unable to undertake any journey because it would cause overwhelming psychological distress to the claimant”.

Entitlement will also be extended to those who are assessed as having an enduring and substantial difficulty which causes them during a journey to either:

  • Be unable to walk.
  • Experience very considerable difficulty whilst walking, which may include very considerable psychological distress.
  • Be at risk of serious harm when walking; or pose, when walking, a risk of serious harm to any other person.

The new rules also allow local authorities to use a broader range of professionals to assess the nature and effects of an applicant’s disability on their ability to get around.

Derek Sinclair, one of Contact’s Family Finance advisers, said: “We get many calls to our helpline about Blue Badge entitlement and lots of parents have been left frustrated by the absence of any start date for the new rules.

“The current rules make it difficult for many people with conditions such as autism or learning difficulties to qualify, so many families will eagerly await the new rules in August opening up entitlement for many more children and adults with hidden disabilities.”
You can find out more about the different Blue Badge rules in the different nations on the Contact website. 

Managing Growth Disorders Webinar

Managing growth disorders: integrating technology into a personalised approach

You may have missed the webinar on Tuesday 21st May but you still have the opportunity to watch it now.

The webinar discussed non-adherence to GH therapy, why this is a problem and what interventions can promote adherence for children and their families. Specialists will be presenting and debating on barriers to effective management of growth disorders and which tools are available to implement to improve short- and long-term outcomes.

This webinar is suitable for, but not limed to, clinical paediatric endocrinologists, clinical adult endocrinologists, paediatric endocrine nurses, clinical psychologists, and all other healthcare professionals interested in the management of growth disorders.

To view the recording, click the image above.

King’s College London Research Project

King’s College London Research Project

Understanding and Improving Treatment Non-Adherence in Paediatric Growth Hormone Deficiency

by Selina Graham
PhD Researcher
Clinical Practice & Medication Use Research Group
Institute of Pharmaceutical Science
King’s College London

Our team here at King’s College London are very keen to further understand the complex issue of treatment non-adherence in paediatric Growth Hormone Deficiency.

The primary aim of recombinant growth hormone treatment during childhood and adolescence is to accelerate linear growth and return the child to the normal growth curve in order for them to attain a ‘normal’ or ‘near-normal’ final adult height. Despite the benefits of growth hormone treatment on long-term health outcomes, evidence has shown that many children with Growth Hormone Deficiency still in fact, fail to achieve their target genetic adult height. This has been largely attributed to what is termed ‘treatment non-adherence’. As growth hormone is administered via a daily subcutaneous injection, treatment non-adherence can take many forms, from taking a smaller dose than prescribed, missing an occasional dose, to taking few or no doses at all.
To develop our understanding, we wish to gain a better insight into the views and experiences of parents/caregivers with regards to their child’s condition and treatment, via two studies which form part of a wider PhD project. We are interested in involving parents/caregivers of children 12 years of age and under, who have been diagnosed with Growth Hormone Deficiency and have been prescribed growth hormone treatment. Parents/Caregivers of patients are eligible if they are responsible for either administering or supervising their child’s growth hormone injection on a daily basis.

All eligible parents/guardians have the option to participate in either the first or second study independently, or to participate in both studies. Taking part in the first study will involve filling out a 10-15 minute questionnaire via a URL address link sent by the King’s College London research team. If preferred, a paper copy with a self-addressed envelope can be posted instead. The second study involves taking part in a 30-40 minute interview, which can be completed either via telephone or face-to-face, at your earliest convenience.

The information collected from both studies will enable us to develop new ways of supporting the use of prescribed growth hormone treatment within endocrine clinical practice. Our findings will further help health care professionals to better support patients with growth hormone deficiencies and their families to get the best results from their prescribed treatment and self-manage their long-term condition effectively.

If you would like to get involved with the research project, we would be delighted to hear from you. If you have any queries or require further information with regards to the project, you can contact the research team via email at selina.graham@kcl.ac.uk

We look forward to hearing from you.

Thank you.