Periodic Reporting for period 2 - PAL-CYCLES (PALliative Care Yields Cancer welLbEing Support)
Periodo di rendicontazione: 2024-03-01 al 2025-08-31
Many patients with advanced cancer leave the hospital with uncertainty about how to proceed with their treatment and aftercare. Communication between healthcare professionals in different settings is often not optimal, resulting in poor continuity and coordination of care, negatively impacting quality of life and increasing avoidable hospital admissions. Unfortunately, palliative care teams are not involved in hospital discharge when needed, which can hinder personalised and holistic care planning focused on the specific needs of individuals requiring palliative care.
Pal-Cycles project aims to develop, implement and evaluate a programme that will facilitate patient-centred communication and continuity of care for people with advanced cancer, reducing unplanned hospital admissions and improving quality of life at the end of life.
Ten partners from nine European countries (The Netherlands, Germany, United Kingdom, Hungary, Poland, Romania, Portugal, Spain and Belgium) are involved in the consortium partnership. Using multi-method approaches, this research group will develop and adapt an intervention to the local, social, cultural, and economic contexts of seven countries (The Netherlands, Germany, United Kingdom, Hungary, Poland, Romania, and Portugal).
Pal-Cycles project aims to develop, implement and evaluate a programme that will facilitate patient-centred communication and continuity of care for people with advanced cancer, reducing unplanned hospital admissions and improving quality of life at the end of life.
Ten partners from nine European countries (The Netherlands, Germany, United Kingdom, Hungary, Poland, Romania, Portugal, Spain and Belgium) are involved in the consortium partnership. Using multi-method approaches, this research group will develop and adapt an intervention to the local, social, cultural, and economic contexts of seven countries (The Netherlands, Germany, United Kingdom, Hungary, Poland, Romania, and Portugal).
In this first reporting period, the project members designed the Pal-Cycles intervention using consultation meetings with both healthcare professionals in the field of oncology and palliative care, and patients or patient representavis. An intervention manual was developed and translated in all partner country's languages. A training based on the core elements of the intervention (identification of patients with Palliative Care needs, holistic assessment, compassionate communication and management of dying phase) was developed and a train-the-trainer programme was run which enables country trainers to provide the training as requested in the specific countries. Additionally, a toolbox for implementing the Pal-Cycles intervention was developed and made available. In preparation of the stepped wedge cluster RCT in which the intervention will be evaluated, the study protocol was collaboratively written and submitted to the coordinator's ethical review committee. In January 2024, the coordinator received a waiver from offical ethical review for this study protocol. A monitoring plan, and a data management plan were developed and an electronic database was designed. In preparation of the process evaluation, a protocol for this study was drafted and a grey literature search on policy documents on transitional care in the participating countries was started. A focus-group with country lead team who worked on the adaptation of the intervention was held to better understand barriers and facilitators in the design and adaptation process. Further, the ethical, gender and sociocultural study started: a protocol for an ethics and equity scoping review was drafted and the review is in progress. A protocol for the gender and sociocultural study was drafted, part of the information was incorporated in the clinical trial protocol.
In the second reporting period, Work Package 3 and 4 have been developed. We have encountered various challenges in the implementation of the clinical stepped wedge trial. Notwithstanding more than 250 patients have been enrolled in the study across four European countries. The identified challenges have led to a more rigorous investigation of the health system background and practice variations between partner sites. This aligns with the work as carried out in WP4 where process analysis is undertaken which will lead to a further identification of barriers and opportunities for the implementation of transitional palliative care programmes across Europe. This will lead to an increased implementation knowledge on how to gain better access to palliative care leading to higher quality and (cost)effectiveness
In the second reporting period, Work Package 3 and 4 have been developed. We have encountered various challenges in the implementation of the clinical stepped wedge trial. Notwithstanding more than 250 patients have been enrolled in the study across four European countries. The identified challenges have led to a more rigorous investigation of the health system background and practice variations between partner sites. This aligns with the work as carried out in WP4 where process analysis is undertaken which will lead to a further identification of barriers and opportunities for the implementation of transitional palliative care programmes across Europe. This will lead to an increased implementation knowledge on how to gain better access to palliative care leading to higher quality and (cost)effectiveness
As the project is still in its early stages, there have only been a few steps on the pathways to impact thus far.
In this first reporting period, the Pal-Cycles programme has been designed using five cornerstones considered crucial to transitions in palliative care, while making adaptable to the local situation of participating settings (WP1). This flexibility increases the impact of the intervention as it can be adopted in various countries and settings, regardless of the circumstances. Furthermore, the training for the Pal-Cycles transitional palliative care programme is adaptable to local requirements, needs and palliative care expertise of health care professionals and the developed toolbox for implementation can provide what is locally needed for the implementation of the Pal-Cycles programme (WP2). The innovative, robust yet complex research design of the stepped wedge cluster randomised controlled trial enables all participating centres to implement the Pal-Cycles programme and bring the (transition to) supportive, palliative, survivorship and end-of-life care to a higher level while maintaining the standards of high-quality research. (WP3) Dissemination and publicity of the Pal-Cycles research project is increasing awareness and recognition of the intervention (WP6).
In the remainder of the project, consecutive steps will be taken on the pathways to impact.
Improved wellbeing and quality of life are measured during our WP stepped wedge trial, mainly in the secondary measurements, and in the forthcoming WP5 relative interviews. An economic analysis is foreseen as an activity in WP3 and will, together with WP4 shed light on the cost effectiveness of transitional care for advanced cancer patients and its (financial) sustainability across several health systems. In the remainder of the project, policy workshops are foreseen that will emphasize the importance of transitional care for advanced cancer in terms of enhanced healthcare policies at a European and at a national level (WP5/6). Supportive documentation and public and professional education will be provided via a MOOC and an accompanying ebook.
In this first reporting period, the Pal-Cycles programme has been designed using five cornerstones considered crucial to transitions in palliative care, while making adaptable to the local situation of participating settings (WP1). This flexibility increases the impact of the intervention as it can be adopted in various countries and settings, regardless of the circumstances. Furthermore, the training for the Pal-Cycles transitional palliative care programme is adaptable to local requirements, needs and palliative care expertise of health care professionals and the developed toolbox for implementation can provide what is locally needed for the implementation of the Pal-Cycles programme (WP2). The innovative, robust yet complex research design of the stepped wedge cluster randomised controlled trial enables all participating centres to implement the Pal-Cycles programme and bring the (transition to) supportive, palliative, survivorship and end-of-life care to a higher level while maintaining the standards of high-quality research. (WP3) Dissemination and publicity of the Pal-Cycles research project is increasing awareness and recognition of the intervention (WP6).
In the remainder of the project, consecutive steps will be taken on the pathways to impact.
Improved wellbeing and quality of life are measured during our WP stepped wedge trial, mainly in the secondary measurements, and in the forthcoming WP5 relative interviews. An economic analysis is foreseen as an activity in WP3 and will, together with WP4 shed light on the cost effectiveness of transitional care for advanced cancer patients and its (financial) sustainability across several health systems. In the remainder of the project, policy workshops are foreseen that will emphasize the importance of transitional care for advanced cancer in terms of enhanced healthcare policies at a European and at a national level (WP5/6). Supportive documentation and public and professional education will be provided via a MOOC and an accompanying ebook.