The report encourages both patients and healthcare professionals to look beyond platelet count in ITP, and champion more empowering conversations about quality of life
Based on the I-WISh, an international survey with 120 UK patients, published in 2020, ‘Numbers that Matter’ highlights the reality of living with ITP, including emotional impact and ability to work, demonstrating the need for greater condition management
Findings suggest a possible disconnect between patients and doctors in terms of treatment goals and communication at consultations, indicating areas for improvement
London, UK, 22 July 2021 — Numbers that Matter, a new published report, marks the launch of the initiative from Novartis to support people affected by, and healthcare professionals treating immune thrombocytopenia (ITP) — particularly the impact of fatigue.
Designed to champion more empowering conversations about quality of life, ‘Numbers that Matter’ collates perspectives from experts in the field and examines the impact of ITP on people living with it—from uncertainty around diagnosis to financial hardship. It also provides recommendations on tailored treatment plans and setting personalised goals, to give patients the care they truly deserve.
Jonny Mellor, British long-distance runner living with ITP and fellow author on the report, adds: “When I look back, I definitely was worried about my diagnosis and what it meant for my career. The Numbers that Matter report reflects the reality of living with ITP and shows how critical communication is between you and your doctor. To be able to live my life with ITP normally is so important … there’s so much I want to go out and achieve, both professionally and personally.”
“When only 3,000–4,000 individuals in the UK suffer from ITP, it’s not surprising that we currently have limited data surrounding the true impact on patients’ and carers’ quality of life,” said Dr Drew Provan, contributing author on the report, and lead author on the International Consensus Report on ITP management. “These insights shed light on the gaps in communication between patients and doctors, and better enable us to develop tailored treatment plans to address the unmet need, facilitate better outcomes, and ultimately, a better life for our patients.”
ITP is an autoimmune disorder that causes a shortage of small cells in the blood known as platelets (thrombocytopenia). It is characterised by a platelet count lower than 100x109/litre, which decreases the body’s ability to form blood clots and so the patient may be at an increased risk of bleeding.1 Among symptoms of the ITP are unexpected bruises, tiny red or purple dots on the skin (petechiae), blemishes, as well as increased fatigue, hindered ability to work and emotional distress due to the visible symptoms of the disease.2
Currently, there is no diagnostic test for ITP—instead, diagnosis is based on the exclusion of other conditions that could cause a low platelet count.3 As a result, treatment decisions are often based on stabilising platelet levels and managing the risk of bleeding, and may overlook burden of symptoms.
Through this initiative, Novartis intends to encourage all those impacted by ITP to talk about the Numbers that Matter to them. Almost 60% of people living with ITP report fatigue as the most frequent symptom of their condition.4 ‘Numbers that Matter’ illustrates that a patients’ wellbeing goes far beyond their platelet count and affects daily living in multiple ways—whether it’s having the strength to take a 3-mile walk, or the ability to enjoy 90 days of summer without hiding their blemishes under long-sleeved clothing.
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- NOTES TO EDITORS -
About ‘Numbers that Matter’ Editorial Board ‘Numbers that Matter’ involved a collaborative effort between doctors, haematologists, clinical nurse specialists and patient advocates. The full list of authors are as follows: Dr Drew Provan, Lead author on the International Consensus Report on ITP management, Dr John Grainger, Chair of British Society of Haematology Paediatric Haematology committee, Dr Nichola Cooper, Consultant haematologist, Hammersmith Hospital and St. Mary’s Hospital, Ana Cabrera, Clinical nurse specialist in oncology and haematology, Jonny Mellor, ITP ambassador and British long-distance runner, and Steve Vernon, Coach to Jonny Mellor, Team New Balance.
About the I-WISh survey The ITP World Impact Survey (I-WISh) is a cross-sectional survey of ITP patients and physicians, funded by Novartis. Across 13 counties, the report includes data from 120 patients and 31 healthcare professionals from the UK, recruited via both physicians and the patient support group (ITP Support Association, UK). Global data collection completed in April 20184-6
Key insights from the UK patients included:
59% of individuals report fatigue as the most frequent symptom they currently experience4
The most important treatment goal for ITP patients is a healthy blood count (73%), while physicians believed it to be reducing spontaneous bleeding (74%)5
ITP impacts patients’ ability to work and undertake everyday tasks, with a third (34%) of patients reporting having to reduce work hours due to their condition – demonstrating the need for greater condition management6
The majority of patients (84%) reported reduced energy levels, with 73% reporting an impacted ability to excerise6
There is some disconnect between patients and physicians, underlining potential areas for improvement in the patient-physician relationship to ensure patients are optimally treated4-6
About Novartis Novartis is reimagining medicine to improve and extend people’s lives. As a leading global medicines company, we strive to use innovative science and digital technologies to create treatments in areas of great medical need. In our quest to find new medicines, we consistently rank among the world’s top companies investing in research and development. Novartis products reach more than 800 million people globally and we are finding innovative ways to expand access to our latest treatments. About 150,000 people of nearly 130 nationalities work at Novartis around the world.
In the UK, we employ approximately 1,500 people to serve healthcare needs across the whole of the UK, as well as supporting the global operations of Novartis. Since 2014, Novartis has invested over £200 million in R&D and is a leading sponsor of clinical trials, in the UK. For more information, please visit www.novartis.co.uk.
Cooper N, et al. Patients’ and Physicians’ Perceptions of Treatments and Goal Setting in Immune Thrombocytopenia (ITP): Findings reported by UK patients and physicians from the ITP World Impact Survey (I-WISh). Poster presented at British Society for Haematology 2020 Virtual. Poster BSH20-PO-056 https://pubmed.ncbi.nlm.nih.gov/33170956/