Consensus Standards for the use of medications in the management of childhood dystonia |
Introduction
We need your help to improve the quality of life of children and young people with dystonia.
Dystonia is a neurological condition which results in uncontrolled, involuntary muscle contractions. Dystonia can be painful, interferes with normal function and participation. Managing childhood dystonia can be challenging for clinicians and families alike. A number of medications are available to help in the treatment of dystonia, but at present there is no robust evidence base to guide their use. Medications choices are currently guided by expert opinion, and there is variability in when, and how, different drugs are used.
We believe there should be greater clarity about how medications are used in the management of dystonia in childhood. We want to focus on how medicines should be used safely and effectively in different settings, by reaching a consensus on a set of standards for their use. A set of standards (i.e. rules on medication use) will help to improve the quality of care for children with dystonia, and help reassure parents, carers and clinicians alike navigating the dystonia journey that that management is on the right track.
We are inviting everyone involved in the care of children with dystonia to suggest standards for how medications should be used. We want to hear the views of children, parents and carers, and as many different professional groups as possible to ensure that we reach the best set of standards. This might include suggestions about:
What information should be provided to families before a medication is started (and how this should be provided)
Setting goals about the use of medications
How to monitor response to treatment and the potential side effects.
We want to be as broad as possible at this stage of the project – so any and all suggestions are welcomed. Suggestions can be provided at the link below, which will also ask some questions about you. We want to collect these details to make sure that we have collected suggestions from all the groups we are interested in hearing from.
This project is supported by the British Paediatric Neurology Association (BPNA), the professional organisation for Paediatric Neurologists in the United Kingdom. More details about the BPNA can be found at www.bpna.org.uk.
The suggestions we collect now will be passed onto the next stage of the project, where we will ask people whether they agree or not with each suggestion. We will be collecting suggestions until Friday 5th April 2024. You are welcome to make as many, or as few, suggestions as you like.
Thank you in advance for supporting this project.
We believe there should be greater clarity about how medications are used in the management of dystonia in childhood. We want to focus on how medicines should be used safely and effectively in different settings, by reaching a consensus on a set of standards for their use. A set of standards (i.e. rules on medication use) will help to improve the quality of care for children with dystonia, and help reassure parents, carers and clinicians alike navigating the dystonia journey that that management is on the right track.
We are inviting everyone involved in the care of children with dystonia to suggest standards for how medications should be used. We want to hear the views of children, parents and carers, and as many different professional groups as possible to ensure that we reach the best set of standards. This might include suggestions about:
What information should be provided to families before a medication is started (and how this should be provided)
Setting goals about the use of medications
How to monitor response to treatment and the potential side effects.
We want to be as broad as possible at this stage of the project – so any and all suggestions are welcomed. Suggestions can be provided at the link below, which will also ask some questions about you. We want to collect these details to make sure that we have collected suggestions from all the groups we are interested in hearing from.
This project is supported by the British Paediatric Neurology Association (BPNA), the professional organisation for Paediatric Neurologists in the United Kingdom. More details about the BPNA can be found at www.bpna.org.uk.
The suggestions we collect now will be passed onto the next stage of the project, where we will ask people whether they agree or not with each suggestion. We will be collecting suggestions until Friday 5th April 2024. You are welcome to make as many, or as few, suggestions as you like.
Thank you in advance for supporting this project.