ExpectedOutcome:
This topic aims at supporting activities that are enabling or contributing to one or several expected impacts of destination 3 “Tackling diseases and reducing disease burden”. To that end, proposals under this topic should aim for delivering results that are directed, tailored towards and contributing to all of the following expected outcomes:
- Reduced health-related suffering and improved well-being and quality of life of patients in need of palliative and end-of-life care and their professional and family caregivers.
- Patients have early and better access to palliative or end-of-life care services of higher quality and (cost) effectiveness.
- Patients and their professional and family caregivers are able to engage meaningfully with the improved evidence-based and information-driven palliative care joint decision-making process.
- Health care providers and health policymakers have access to and use the improved clinical guidelines and policy with respect to pain and/or other symptoms management, psychological and/or spiritual support, and palliative or end-of-life care for patients.
- Reduced societal, healthcare and economic burden associated with increasing demands of palliative or end-of-life care services that is beneficial for citizens and preserves sustainability of the health care systems.
Scope:
The complexity of health conditions related to life-threatening and chronic diseases, acute and chronic pain, late or long-term side effects as consequences of diseases and also their treatments affect quality of life of patients and their families and pose an immense societal and economic burden. Palliative[1] and end-of-life care approaches improve quality of life of patients and professional and family caregivers through the prevention and relief of suffering by means of early identification, assessment and treatment of pain and other factors such as physical, psychosocial and spiritual problems. Although a variety of interventions are in use, they are often not adequately validated or adapted to the specific needs of patients affected by complex diseases or their co- or multimorbidities. Therefore, a need exists to strengthen the evidence base for available patient-centred effective interventions improving quality of life and outcomes of patients of all ages in the domains of palliative and end-of-life care.
Proposals should address all of the following activities:
- Demonstrate the effectiveness and cost-effectiveness of newly proposed or specifically adapted pharmacological and/or non-pharmacological interventions to improve well-being and quality of life of patients suffering from life-threatening and chronic diseases[2] (including disabilities). Whenever relevant, serious late and long-term side effects of disease treatments or symptoms that occur at the end of life of patients should be considered. The legal and ethical aspects of the proposed interventions should be taken into consideration and be fully addressed.
- Prove the feasibility of integrating the proposed interventions in current pain management, palliative and/or end-of-life care regimes and healthcare systems across Europe. The complex human, social, cultural and ethical aspects that are necessarily managed by those care regimes and healthcare systems should be reflected from patients’ as well as those of their professional and family caregivers’ perspectives. The views and values of patients and their caregivers (including families, volunteers, nurses and others) should also be appropriately taken into account in patient-centred care decisions.
- Identify and analyse relationships between sex, gender, age, disabilities and socio-economic factors in health and any other relevant factors (e.g. ethical, familial, cultural considerations, including personal beliefs and religious perspectives, etc.) that could affect health equity[3] to the proposed interventions, including equitable access.
- Analyse the barriers and opportunities to re-invigorating and enhancing timely social inclusion and active engagement of patients in need of palliative and end-of-life care and their caregivers.
- Provide implementation strategies and guidelines of patient-centred communication for health and social care professionals as well as standards for evidenced based communication trainings for caregivers, considering the potential of social innovation approaches or tools.
- When relevant, provide policy recommendations for pain management, psychological and/or spiritual support, and palliative or end-of-life care of patients.
Randomised clinical trials and observational studies, targeting different age groups, should be considered for this topic. Proposals should give a sound feasibility assessment, provide details of the methodology, including an appropriate patient selection and realistic recruitment plans, justified by available publications and/or preliminary results.
This topic requires the effective contribution of social sciences and humanities (SSH) disciplines and the involvement of SSH experts, institutions as well as the inclusion of relevant SSH expertise, in order to produce meaningful and significant effects enhancing the societal impact of the related research activities. Proposals should consider a patient-centred approach that empowers patients, increase health literacy in palliative and end of life care, promotes a culture of dialogue and openness between health professionals, patients and their families, and unleashes the potential for social innovation.
All projects funded under this topic are strongly encouraged to participate in networking and joint activities, including internationally, as appropriate. These networking and joint activities could, for example, involve the participation in joint workshops, the exchange of knowledge, the development and adoption of best practices, or joint communication activities. This could also involve networking and joint activities with projects funded under other clusters and pillars of Horizon Europe, or other EU programmes, as appropriate. Therefore, proposals are expected to include a budget for the attendance to regular joint meetings and may consider covering the costs of any other potential joint activities without the prerequisite to detail concrete joint activities at this stage. The details of these joint activities will be defined during the grant agreement preparation phase. In this regard, the Commission may take on the role of facilitator for networking and exchanges, including with relevant stakeholders, if appropriate.
Applicants envisaging to include clinical studies should provide details of their clinical studies in the dedicated annex using the template provided in the submission system. See definition of clinical studies in the introduction to this work programme part.
[1]https://www.who.int/cancer/palliative/definition/en/
[2]Proposals focused on cancer-related research are not in the scope of this topic. The supportive, survivorship, palliation and end-of-life care of cancer patients was already covered by the specific topic in the Cluster Health Work Programme 2021-2022. Applicants are invited to check the Work Programme of the Mission on Cancer for further funding opportunities for this research areas.
[3]https://www.who.int/topics/health_equity/en/
