New toolkit devised by the ITP Support Association assists shared decision making between patients and healthcare professionals in the management of ITP

red blood cells

A toolkit to support people with immune thrombocytopaenia (ITP) has been launched by the ITP Support Association. The shared-decision making toolkit aims to facilitate improved treatment and care through empowering and educating patients, and reminding healthcare professionals, about the importance of ongoing collaborative decision making in the management of ITP.

The toolkit—Making the right choices in ITP management and carea shared decision-making toolkit for patients—was developed via a multistakeholder ITP Expert Working Group led by the ITP Support Association and the UK ITP Clinical Forum. It was created in response to the findings of a patient survey conducted in 2020 that highlighted inconsistencies in the diagnosis and management of ITP that can negatively impact patients.

ITP is a rare autoimmune blood disorder that causes a shortage of platelets and results in excessive bleeding and bruising. It can develop following viral infection, vaccination, or administration of certain medications; however, for most people, the cause is unknown. In the UK, the incidence of ITP is approximately six per 100,000 adults; this approximates to 2400 new adult cases each year.

A press release from the ITP Association described the toolkit as defining what best practice collaborative decision making in ITP management and care looks like, and said that it provides a practical guide to help patients, carers, and healthcare professionals to achieve this.

The toolkit has been launched as part of Global ITP Awareness Week (20–25 September 2021). ITP is one of the first haematological conditions for which specific guidance has been developed in response to NICE guidance on shared decision making. The toolkit has been endorsed by the Royal College of Pathologists and Genetic Alliance UK. The ITP Expert Working Group and partners are calling for this best practice guidance to be adopted across all healthcare settings in the UK.

Dr Quentin Hill, Chair of the UK ITP Forum, said: ‘The ITP toolkit is an excellent introduction and companion document to support and empower patients. It guides them step by step though the journey of diagnosis and medical care. A collaborative approach is more rewarding for patients and clinicians, and I have no hesitation in recommending that the ITP Toolkit is given to all patients at presentation.’

The ITP Support Association is a UK charity that provides free patient information resources to patients with ITP and their families and carers, as well as medical professionals and researchers. The UK ITP Forum is a clinical working group of healthcare professionals with a special interest in the care of patients with ITP.

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