Structuring initiative of the Axis 1 – Project for a minimum dataset
One of the goals of Axis 1 is to create a toolkit that could easily be implemented in various clinical and research settings with the eventual goal of creating a province-wide minimum dataset to identify psychosocial and symptom management needs and quality of life needs of patient receiving palliative care across the province.
The creation of a minimum dataset adapted for the Quebec palliative care context has important interwoven clinical and research implications. Clinically, standardised measurements will lead to improved detection of symptoms that alter patients’ quality of life as well as improved symptoms management across various settings. It will also provide in vivo indicators of the quality of care across different clinical settings providing palliative care at the micro or service level.
For the purposes of research, it will eventually lead to the development of a province-wide databank which will facilitate epidemiological analyses of psychosocial needs and symptom management across the province. This will also allow us to determine province-wide indicators of the quality of care, which could drive the development of new research questions, collaborations, interventions and studies testing such interventions, and indicate where funding might be needed to address gaps in care.
Axis 2 structuring initiative (this text is a preliminary version and will be updated soon)
Axis 2 of the RQSPAL is a group of interdisciplinary researchers interested in pediatric palliative care.
Pediatric palliative care is specialized care, active and comprehensive, which take into account the physical, psychological, social, spiritual and developmental dimensions of a child and his family. They are intended for all children with life-threatening conditions, as well as their families, loved ones, and caregivers.
Pediatric palliative care is relevant at any stage of an illness or a condition that threatens the life of a child, sometimes even before diagnosis. They include varied trajectories that range from the perinatal period to adulthood. They are complementary to curative care and have the objective of alleviating suffering, optimizing the quality of life and supporting families in making care decisions that correspond to their values, as well as to the care context. Pediatric palliative care includes end-of-life care, but is not limited to it.
Axis 2 of the RQSPAL influences the development and organization of pediatric palliative and end-of-life care services in Quebec. It aims to develop research collaborations and support the production of new scientific knowledge and the transfer of this knowledge.
Structuring initiative of the Axis 3 – Review of the different observatory models in the health field in Quebec and Canada
The Axis 3 is working, collaboratively with the INESSS, the ministerial authorities, and the Commission d’accès à l’information, on the implementation of a national end-of-life observatory. This observatory would group all relevant data on the care trajectories of patients at end-of-life in ordre to synthesize knowledge or to answer questions.
It would also make it possible to map and share innovative initiatives from the perspectives of care and services, as well as of policies and programs. It is essential to begin with the documentation of existing observatories in Quebec and Canada in order to identify a model more suitable to the needs of the researchers, clinicians and decision-makers in the palliative care field. A rapid review will be conducted to generate a synthesis of knowledges that will support the decisions made in implementing a national observatory in end-of-life.
Here is the draft document for the creation of a national end-of-life observatory which was presented and supported by the ministerial task force.