The Thrombosis in Advanced Disease Alliance is a joint venture between Cardiff University and Hull York Medical School to develop a collective of patient bodies and research organisations to improve the care of patients with advanced malignant and non-malignant disease.
Why the TRAD Alliance?
The TRAD Alliance was developed in response to a growing need expressed from palliative care clinicians and patients that there is insufficient applicable data to inform the management of VTE in patients with incurable disease. Following a scoping exercise amongst palliative care physicians at the last EAPC and a focus group of patients affected by VTE, the TRAD Alliance was born.
“These patients currently have no voice and despite a willingness to participate in research are excluded from studies which may help future patients similar to themselves”
The emerging interest of VTE in advanced cancer and non-cancer patients continues. Whilst there is a large body of clinical trial evidence on the epidemiology, diagnosis, prevention and treatment of VTE in all clinical subgroups of patients, those with advanced disease (ECOG >2, prognosis < 3 months) are rarely included in such studies.
“Current VTE research answers questions pertaining to the pathophysiological process not the patient experience or quality of life”
The outcome measures used in VTE studies are less applicable to patients in the palliative stages of their disease. The majority of studies use endpoints such as asymptomatic VTE, major bleeding complications and survival upon which to base clinical recommendations. Within the palliative care setting these outcome measures have less meaning, whilst symptomatic disease burden and quality of life are considered more appropriate.
“Current evidence may not be applicable to the advanced disease patient”
There is evidence to suggest the pathophysiology, complication rates and pharmacokinetics change with progressive disease and that calls into question how much one can extrapolate the data from other trials. In addition, the sequelae of complications of VTE in advanced disease are likely to be catastrophic since such patients have higher bleeding risks and greater likelihood falls e.g. elderly patients, compliance with medicines (e.g. dementia, elderly) of bleeding into critical areas (e.g. stroke patients and patients with brain metastases).
“Palliative care patients are living longer with incurable disease and those affected with VTE will increase.”
Developments in the management of incurable malignant and non-malignant disease mean that palliative patients are living longer and the population of such patients will increase with slower attrition. Until now, studies within this patient group have been limited by the recognised challenges of conducting research within the palliative care environment.