This project will audit VTE diagnosis records to understand why signs and symptoms are often missed and how we can change this to save lives
Addressing delayed and missed diagnosis of venous thromboembolism (VTE) - An audit of UK-wide VTE patient pathways from early symptoms to diagnosis of VTE
Thrombosis UK works to increase awareness, understanding and support for all those affected by or at risk of blood clots, also known as ‘venous thromboembolism’ (VTE) the umbrella term for deep vein thrombosis (DVT) and pulmonary embolism (PE). Our work, including free accredited education, advocacy and provision of free patient support and information, seeks to prevent avoidable VTE events, redress delay in diagnosis and prevent suffering and loss of life due to blood clots.
VTE is common with 1 in 20 people experiencing a VTE event at some point in their life. Incidence rates in the UK have been documented as 1–2 per 1,000[1] and they have been attributed as the cause of many thousands of deaths[2], while approximately 5–10% of inpatient mortality has been shown to be VTE related[3]. However, blood clots are not only a significant cause of death, but also of long- term disability and long-lasting ill-health problems.
VTE is a considerable burden on NHS resources, in 2020 the All-Party Parliamentary Group for Thrombosis (APPGT) reported estimated annual cost of VTE across NHS Trusts alone, in excess of £165 million[4]. While in 2023, NHS Resolution published litigation costs related to VTE of more than £23 million[5].
However, despite prevalence, costs, harm and mortality risks, early diagnosis of VTE remains challenging.
Gary was a fit and healthy 40-year-old teacher when he began to experience painful aches in one leg.
“Gary’s GP advised him to go to A&E because he thought he might have a DVT…. The doctor in the hospital said his Wells score wasn’t high enough and so did not offer further testing, but suggested it was a muscle ache and discharged Gary.”
Nine days later Gary woke struggling to breath and died shortly later, of an undiagnosed pulmonary embolism.
Jenny was an active 74-year-old who had been admitted to hospital for shortness of breath and after recovering from COVID. Jenny also complained of pains in her leg.
“Despite all the signs and a dizziness / collapse the prior night there was no suspicion of PE by any doctor who reviewed her.”
After nine days of increased symptoms but no suspicion of VTE, Jenny died of an undiagnosed PE.
Emily was 30 years of age when she began to feel unwell. Despite attending her local practice, and during a second visit having a swollen painful leg and experiencing shortness of breath, VTE was not considered, and Emily was sent home.
Within hours of visiting Emily collapsed and died of an undiagnosed PE.
Thrombosis UK frequently hears from individuals who had attended multiple medical appointments before a diagnosis was made, and on almost a weekly basis, Thrombosis UK hears from families devastated by the loss of a loved one due to an undiagnosed PE, despite the person presenting to a medical centre with symptoms prior to their death.
Research has indicated that for every case of a PE diagnosed before death, there are at least two others diagnosed post-mortem, where the diagnosis was not considered pre mortem.
“Classic” presentation with abrupt onset of pleuritic chest pain, shortness of breath, and hypoxia is rarely the case. Studies of patients who die unexpectedly of pulmonary embolism reveal that they complained of nagging symptoms often for weeks before death related to pulmonary embolism. Forty percent of these patients had been seen by a physician in the weeks prior to their death[6] [7].
Throughout the UK and across primary and secondary care, individuals are dying prematurely because:
(i) a diagnosis of venous thromboembolism is not being considered,
(ii) and the National Institute for Health and Care Excellence pathway to VTE diagnosis / elimination, is frequently incorrectly interpreted and so not followed.
Patient safety in early diagnosis of VTE is failing and there is an urgent need to save lives by understanding the key reasons causing these preventable deaths.
Thrombosis UK believes this is a patient safety crisis and is seeking to urgently review the common pathway to diagnosis for VTE patients.
This project will carry out a retrospective audit from the previous 12 months of diagnosed VTE patients to yield insightful information on challenges, common errors, and barriers to a patient’s VTE diagnosis.
This work is a first of its kind and we have no doubt, will inform future training, pathway guidance and practice, and in doing so will save lives.
The audit will look at:
Once completed we will prepare and publish a paper on the findings, and share this with NHS Patient Safety, The Medical School Council, other Medical School Training departments, the National Institute for Health and Care Excellence, Royal Colleges including the Royal College of General Practitioners, Royal College of Emergency Medicine, and Primary Care Cardiovascular Society.
We will seek to collaborate with all professional bodies and organisations involved in VTE prevention, diagnosis and management to develop an updated VTE training curriculum for all undergraduates including doctors, nurses’ pharmacists and midwives.
If learning from audit indicates, work with NICE on improving implementation of VTE diagnosis guidance.
Benefit to the NHS
VTE is largely preventable, but when an event occurs, if diagnosed promptly, can be managed and associated complications[8], effecting both physical[9] and mental health[10], significantly reduced. However, VTE costs the NHS millions of pounds due to delay and error resulting in life-long complications causing extensive burden on NHS services, and litigation costs when avoidable errors are made.
Missed diagnosis is a key cause of avoidable death associated with VTE and a high-cost burden in litigation.
Auditing to understand common VTE patient pathways across UK healthcare services, will provide invaluable information to improve training, services and software that will support healthcare practitioners identify potential VTE events in first presentations and follow approved national guidelines thoroughly to investigate for VTE.
This will bring multiple benefits to the NHS, but paramount will be:
a. Early detection and diagnosis of VTE.
b. Identifying local factors that enable prompt diagnosis, and local barriers to delay.
c. Identify common presenting factors that can act as ‘red flags’ to think thrombosis and investigate.
d. Identify obstacles in following NICE guidelines on VTE diagnosis.
e. Highlight common re-occurring issues and presentations which should red-flag thrombosis.
f. Help to identify common risk factors in patients presenting.
g. Reduced multiple appointments seeking diagnosis.
h. Identify common diagnostic tests enabling early diagnosis or adding a barrier to delay.
i. Reduced costs for unnecessary multiple presentations, some of which will be in A&E, at even greater financial cost.
j. Reduced risk of litigation due to failure to consider and investigate thoroughly for VTE.
Benefit to patients
Venous thromboembolic events have a life-long impact.
Related complications are frequent and include pulmonary hyper-tension, post thrombotic syndrome and increased risk thrombotic risk. Scientific research has evidenced the impact blood clots can cause on mental health and well-being, especially when the diagnosis is delayed and becomes life threatening. Increased risk of further thrombotic events results in life-long considerations on health and lifestyle including family-planning (both having children and contraception), work, exercise and general health, future medical treatment or required therapies for example in cancer treatment and life insurance.
All research has shown that delay in diagnosis causes increased complications and increase burden on well-being and health. When a diagnosis of VTE is delayed, the outcome is life-threatening and too often, fatal.
This work would lead to improved understanding of the barriers to prompt diagnosis and support informed implementation of education, practice, and IT software to redress this and reduce both the burden and harm on patients.
Early diagnosis of VTE will prevent catastrophic, sudden, premature, death which is almost wholly preventable. Early diagnosis will improve outcomes. Work leading to improve early detection and diagnosis of VTE will prevent suffering on families and loved ones left behind.
Money raised through this Crowdfunded will help us to carry out this important project and help prevent future suffering, loss and premature deaths due to blood clots.
[1] National Institute of Health and Care Excellence:
https://www.nice.org.uk/guidance/ta287/documents/pulmonary-embolism-acute-treatment-vte-prevention-rivaroxaban-appendix-b-final-scope2#:~:text=The%20annual%20incidence%20of%20venous,7–8%20per%2010%2C000%20people
[2] NHS Digital https://digital.nhs.uk/data-and-information/publications/statistical/nhs-outcomes-framework/march-2022/domain-5---treating-and-caring-for-people-in-a-safe-environment-and-protecting-them-from-avoidable-harm-nof/5.1-deaths-from-venous-thromboembolism-vte-related-events-within-90-days-post-discharge-from-hospital
[3] Cohen AT, Tapson VF, Bergmann JF et al. Venous thromboembolism risk and prophylaxis in the acute hospital care setting (ENDORSE study): a multinational cross-sectional study. 2008;: 387–394. https://pubmed.ncbi.nlm.nih.gov/18242412/
[4] APPGT 2020 Report: https://thrombosisuk.org/downloads/APPTG%20Annual%20Review%202019%20100320.pdf
[5] NHS Resolution 2023, VTE: https://resolution.nhs.uk/resources/venous-thromboembolism/
[6] Kline JA, Runyon MS. Pulmonary embolism and deep venous thrombosis. In: Marx JA, Hockenberger RS, Walls RM, editors. Rosen’s Emergency Medicine Concepts and Clinical Practice. 6th ed. London: mosby; 2006. pp. 1368–1382
[7] Safi M, Rostami RT, Taherkhani M. Unusual presentation of a massive pulmonary embolism. J Tehran Heart Cent. 2011 Winter;6(1):41-4. Epub 2011 Feb 28. PMID: 23074604; PMCID: PMC3466862
[8] Journal of the American Heart Association https://www.ahajournals.org/doi/10.1161/JAHA.121.024358#:~:text=Clinical%20Perspective&text=Among%20patients%20with%20venous%20thromboembolism,developed%20PH%20within%202%20years.
[9] PubMed https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6142466/
[10] BMJ Open https://bmjopen.bmj.com/content/9/2/e024805
This project successfully funded on 2nd October 2023