Three machine-learning-based models for predicting were developed to support the identification of patients in need of PC, which have been allocated at a website redesigned and validated using a user-centered design techniques. Additionally, they have been registered as a software which is free to use for academic purposes.
Also, to support HCPs in the identification of patients’ needs, a corpus with freely available videos with patient and carer stories on living with COPD was collected and text analysis was conducted on the video transcripts to extract key terms from patient stories.
A two-arm multi-centre randomized controlled trial (RCT) has been performed in four European cities: Valencia-Spain, Thessaloniki-Greece, Amadora-Portugal and Inverness-UK involving 370 patients, 133 carers and 46 HCPs. The intervention implemented was the NAT:PD (Needs Assessment Tool for Progressive Disease) aimed to assist HCPs in the identification of palliative needs among patients with progressive disease. The RCT was assessed in terms effectiveness, cost-effectiveness and implementation aimed to analyse if the NAT:PD has positive impacts on participants’ welfare, to demonstrate ‘value for money’ and possible cost savings derived from the intervention implementation.
Main results of the RCT suggest the NATPD is an easy and useful tool to initiate conversations with patients and their carers. Thanks to its implementation some changes in the care provision were introduced in the clinical practice, such as a more formal referral process to avoid decision-making based on ‘clinical instinct’; a more structured evaluation for patients; or increased awareness on patients’ needs beyond the physical symptoms.
Additionally, several IT-based tools have been developed as part of the patient-centred supportive PC ecosystem augmentation aimed to support patients and carers in the self-management of their conditions and to facilitate HCPs the management of patients. These technologies have been deployed in the clinical sites as feasibility studies involving patients, carers and HCPs to evaluate their use, usability, user-experience or acceptability. Results suggest that all of them gather basic features and functionalities to consider them as feasible to be implemented at a larger basis as well as to perform clinical studies aimed to analyse their effectiveness on welfare outcomes.
A clinical dashboard has been designed using the RCTs data to support HCPs in comprehending current processes, considering patients’ variability and nature including a set of Interactive Process Indicators to evaluate the performance of the NAT:PD intervention.
Also, as part of the transference and scaling-up of the project outcomes, policy recommendations have been designed aimed to raise awareness of the need to early provision of PC for older people as well as to create a dialogue on the topic with various EU stakeholders to defend the rights of older people. Clinical guidelines have been developed as well to support clinicians in the implementation of early approaches to provide PC among older patients with non-oncological chronic conditions and their carers.
Finally, the project website and social media channels have been a powerful mean to spread the project among a varied audience. Eleven publications in peer-reviewed journals have been released so far and the project has been communicated and presented in 40 conferences or workshops. Finally, synergies with other projects funded under the same topic as InAdvance have been boosted by organizing a webinar series on PC research.
