Periodic Reporting for period 3 - INADVANCE (Patient-centred pathways of early palliative care, supportive ecosystems and appraisal standard)
Reporting period: 2022-01-01 to 2023-06-30
The traditional focus of palliative care (PC) services has been centred on when terminal decline begins. However, the anticipation of PC pathways, that is early or timely PC, enables the integration of both curative and palliative perspectives simultaneously with the final aim of improving patients’ quality of life. The benefits of this early approach of PC have been clearly demonstrated among oncological patients, but these advances are not developed to the same extent in the approach of non-oncological chronic conditions.
InAdvance aims to improve the benefit of PC services in the daily clinical routine among older patients with complex chronic conditions through the design of effective, replicable and cost-effective early palliative interventions centred-on and oriented-by patients. In this sense, patients will be benefited from an improved or maintained quality of life and alleviation/control of multi-faceted symptoms and needs. Their relatives/informal caregivers will be also approached supporting their caring role to improve/maintain also their quality of life. And, finally, health and care professionals (HCPs) will be supported enhancing their competences dealing with PC patients in terms of detection, care, management and communication.
InAdvance aims to improve the benefit of PC services in the daily clinical routine among older patients with complex chronic conditions through the design of effective, replicable and cost-effective early palliative interventions centred-on and oriented-by patients. In this sense, patients will be benefited from an improved or maintained quality of life and alleviation/control of multi-faceted symptoms and needs. Their relatives/informal caregivers will be also approached supporting their caring role to improve/maintain also their quality of life. And, finally, health and care professionals (HCPs) will be supported enhancing their competences dealing with PC patients in terms of detection, care, management and communication.
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.
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.
The most important progress beyond the state of the art is the early PC approach specifically focused on the older population with non-oncological complex chronic conditions. In short, the most relevant expected results and potential impacts of InAdvance are the following:
- Predictive models aimed to early identify complex chronic patients which will facilitate their referral to early PC services.
- A framework for multi-level equitable needs analysis has been produced, which has been linked to the PC pathways in each clinical site. This generic needs assessment tool (NAT:PD) has been tested to identify patients’ and their carers’ PC needs and compared with usual care in a multi-centre two-arm RCT.
- This is the first study implementing the NATPD on a sample of older patients with multimorbidities and their caregivers. Results did not show a clear trend of benefits on several wellbeing measures. However, the intervention group maintained similar quality of life values during the study follow-up and increased slightly their scores comparing T0-T4, in contrast with the care-as-usual group, which experienced a deterioration in their quality of life to values slightly lower than in T0.
- The project provides insight of economic evaluation of early PC and cost-effectiveness evaluation was conducted from a societal perspective collecting intervention costs, other healthcare costs and informal care costs.
- NAT:PD intervention was considered as an easy and useful tool to initiate conversations with patients and their relatives/informal carers.
- Raise awareness on the benefits of an early PC approach among HCPs, patients and carers in terms on improving quality of life and control of symptoms.
- Development of supporting ICT-based systems to enhance the PC ecosystem around the patient aimed at covering some of the needs highlighted by our target patients, their families/informal caregivers and health and care professionals in terms of training, information and monitoring.
- Evidence-based policy recommendations aimed to raise awareness of the need to early provision of PC for older people. These recommendations have been co-created with the involvement of stakeholders at EU level.
- Clinical guidelines to support clinicians on the creation of patient-centred pathways of early PC for older patients with non-oncological chronic conditions.
- The project dashboard and appraisal standard provides human-understandable graphical representation aimed to support healthcare stakeholders in comprehending the PC processes, allowing its measurement, and optimization.
- Predictive models aimed to early identify complex chronic patients which will facilitate their referral to early PC services.
- A framework for multi-level equitable needs analysis has been produced, which has been linked to the PC pathways in each clinical site. This generic needs assessment tool (NAT:PD) has been tested to identify patients’ and their carers’ PC needs and compared with usual care in a multi-centre two-arm RCT.
- This is the first study implementing the NATPD on a sample of older patients with multimorbidities and their caregivers. Results did not show a clear trend of benefits on several wellbeing measures. However, the intervention group maintained similar quality of life values during the study follow-up and increased slightly their scores comparing T0-T4, in contrast with the care-as-usual group, which experienced a deterioration in their quality of life to values slightly lower than in T0.
- The project provides insight of economic evaluation of early PC and cost-effectiveness evaluation was conducted from a societal perspective collecting intervention costs, other healthcare costs and informal care costs.
- NAT:PD intervention was considered as an easy and useful tool to initiate conversations with patients and their relatives/informal carers.
- Raise awareness on the benefits of an early PC approach among HCPs, patients and carers in terms on improving quality of life and control of symptoms.
- Development of supporting ICT-based systems to enhance the PC ecosystem around the patient aimed at covering some of the needs highlighted by our target patients, their families/informal caregivers and health and care professionals in terms of training, information and monitoring.
- Evidence-based policy recommendations aimed to raise awareness of the need to early provision of PC for older people. These recommendations have been co-created with the involvement of stakeholders at EU level.
- Clinical guidelines to support clinicians on the creation of patient-centred pathways of early PC for older patients with non-oncological chronic conditions.
- The project dashboard and appraisal standard provides human-understandable graphical representation aimed to support healthcare stakeholders in comprehending the PC processes, allowing its measurement, and optimization.