These have been approved by the BSPED and reflect the Society's views on best practice for the average patient.
Each patient must be considered as an individual in the context of their condition and other medication, and whilst every effort has been made to ensure the factual accuracy of the contents no liability can be accepted for any litigation, claims or complaints arising from the use of the statements, which is solely at the discretion of the reader.
BSPED has been made aware of concerns of families with children with endocrine issues relating to a tragic case reported in the media. It is not possible for BSPED to comment on specific cases, however we would advise any family concerned about this article to discuss any concerns they have directly with their clinical endocrinology team.
Whilst it is recognised that multiple daily hydrocortisone dosing and 24 hr cortisol profiling may be beneficial in some patients with adrenal insufficiency, including congenital adrenal hyperplasia, whose control is challenging, there is currently no evidence to support this practice in all patients. The BSPED is currently seeking evidence to inform the development of a more detailed position statement and its members are invited to contact the Chair of the Clinical Committee.
The BSPED recommends the following:
- In accordance with NICE guidance (see below), the BSPED recommends that "the choice of product is made on an individual basis and after informed discussion between the responsible clinician and the patient and/or their carer about the advantages and disadvantages of the products available, taking into consideration therapeutic need and the likelihood of adherence to treatment."
- The NICE guidance on choice of product should run throughout an individual’s duration of treatment with growth hormone. Treatment may require re-assessment upon transition from paediatric to adulthood services.
- Automatic substitution (dispensing one brand instead of another equivalent or interchangeable brand) by professionals other than the prescribing team, without consultation with the hospital consultant managing the growth disorder, is not appropriate.
NICE: National Institute for Health and Care Excellence Technology appraisal guidance, 26 May 2010
"Treatment with somatropin should always be initiated and monitored by a paediatrician with specialist expertise in managing growth hormone disorders in children. The choice of product should be made on an individual basis after informed discussion between the responsible clinician and the patient and/or their carer about the advantages and disadvantages of the products available, taking into consideration therapeutic need and the likelihood of adherence to treatment. If, after that discussion, more than one product is suitable, the least costly product should be chosen."
The BSPED wishes to highlight that the management of children with Gender Identity Dysphoria is a highly specialised area. All children and young people with this condition should only be managed by a specialized team of clinicians with expertise in this area.
In England and Wales these services are provided by the Gender Identity Development Service (GIDS) based in London and Leeds.
In Scotland the service is provided by Sandyford Clinic Glasgow, together with clinicians at the Glasgow Royal Children's Hospital.
In Northern Ireland the service is provided by the Royal Belfast Hospital for Sick Children.
All referrals should be directed to these institutions alone
Hospitals in the UK stopped using pituitary growth hormone to treat children in 1985 as soon as a link between the treatment and Creutzfeldt–Jakob syndrome (CJD) was identified. Since then (over the last 30 years or more) a synthetic form of the growth hormone which does not carry the risk of disease has been used. New research has raised the possibility of a link between human growth hormone treatment (used before1985) and proteins in the brain that may lead to Alzheimer's in later life. Further research is needed before this potential link can be confirmed but if anyone has any concerns they can contact their local paediatric endocrinologist or the human growth hormone helpline based at the UCL Institute of Child Health (020 7404 0536). It is important to emphasise that children and adolescents currently on synthetic growth hormone (or anyone who only received growth hormone injections after 1985) are not at risk - the only people who may be at risk are adults who received pituitary human growth hormone prior to 1985.
The BSPED wishes to highlight that it is not possible to accurately assess a child’s age based on physical examination or bone age assessment. Children and young people mature at very different rates and an examination can only demonstrate the stage of physical development that child is at, on that day. For example, an 11 year old girl who had an early puberty and has started her periods will be physically indistinguishable from a 15 year old girl who is at the same stage of puberty. The converse is also true – it is not possible to physically differentiate a young person who has delayed puberty from a younger child who is at the same pubertal stage. Bone age X rays will only report the degree of maturity of the bones, which is highly dependent on the child or young person’s pubertal stage and physical development. For the same reasons as given above, they cannot be used to accurately age a child or young person. For these reasons, we do not support the use of physical examination or bone age X ray assessment as tools for age assessment in children and young people.
The DKA Calculator 2015 published with the DKA 2015 Guideline on the BSPED website does not yet have official approval by the MHRA as a medical device. Pending formal MHRA approval, clinicians need to be aware that they use this calculator at their own risk and that they are aware that DKA calculator does not have a weight limit. Adjustment to 50th centile weight for age or inserting a weight limit should be considered in obese type 1 children presenting with DKA.