Research Associated Clinical Research Groups

Paediatric chronicity and palliative care

Research Program

Associated Clinical Research Groups

Leaders

Where we are

SJD Barcelona Children's Hospital

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The Paediatric Chronicity and Palliative Care group was organised in response to the concern of the professionals of the Palliative Care and Complex Chronic Patients Service (C2P2 Service of Sant Joan de Déu Barcelona Children's Hospital) for increasing the existing knowledge in this field in order to improve the quality of life of children and adolescents with serious and/or life-limiting illnesses.

In the case of adults, the prevalence of chronicity and of the need for palliative care is steadily rising, especially among elderly patients, exerting a major impact on healthcare services. However, even though a great deal of research is being conducted in this field, its results are hard to extrapolate to paediatrics. The reason for this is that chronicity and palliative care in paediatrics are marked by special features that differentiate them considerably from these areas in adults:

  • In paediatrics, most of the disorders responsible for chronicity and fragility are rare diseases, while highly prevalent disorders (Alzheimer and other dementias,  cardiovascular diseases, osteoporosis and arthrosis, etc.) are usually the cause in adults.
  • The care unit in paediatrics is always the patient and his or her family.
  • The natural history of adult disorders is very well described. In paediatrics, by contrast, an uncertainty or "prognostic paralysis" often exists precisely because rare diseases are involved, complicating the handling of patients' situations and the making of decisions.

In short, for all these reasons, the existing knowledge of paediatric complex chronicity and palliative care must be increased with the ultimate aim of improving the care provided to child and adolescent patients and their families.

Research lines

  1. Advanced and complex chronic illnesses in paediatrics. This line studies the various factors (biological, psychological, spiritual, social, etc.) involved in complex chronic disorders and advanced illnesses in children and adolescents.
  2. New care models in paediatric complex chronicity and palliative care. This line focuses on the exploration and evaluation of new care models in paediatric complex chronicity and palliative care, including e-health tools, the digitisation of processes, and the use of artificial intelligence in the assessment and management of patients.

Scientific objectives

  1. Evaluate the usefulness of home telemonitoring, developing and consolidating this area of research and linking it to innovation.
  2. Complete the AIccelerate project and disseminate its results.
  3. Establish specific validated tools for the multidimensional assessment of children and their families.
  4. To produce national and international publications derived from the research carried out, both scientific and informative.

Area/Field of expertise

The group's field of expertise comprises paediatric palliative care and complex chronicity, and specifically interventions improving the quality of life of patients and their families. In order to achieve the required improvement, it is necessary to use multimode instruments for the assessment of symptoms and quality of life, and to develop tools that predict which patients will be needing a more intense follow-up and treatment. In particular, the following instruments will be used:

  • Quality of life scales, symptoms questionnaire, and screening questionnaires for emotional distress/fatigue in carers with a view to assessing the impact of the illness on the patient and the family unit. Many of the existing instruments have been conceived for adults so they will need to be validated in paediatrics and new instruments will have to be developed when necessary.
  • Telemonitoring tools: different instruments will be tested and used for the home monitoring of patients.

Group members

Last Publications

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Projects

Project name:
PALLIAKID_COMPREHANSIVE PAEDIATRIC PALLIATIVE CARE APPROACH
Leader
Sergi Navarro Vilarrubi, Sílvia Ricart Campos
Funding entities:
European Commission
Code
101137169
Starting - finishing date:
2023 - 2028
Project name:
Les narratives clíniques de la mort: una oportunitat per al desenvolupament ètic dels professionals?
Leader
Pau Miquel Diego
Funding entities:
Fundació Víctor Grifols i Lucas, Miquel Diego, Pau
Code
NARRA23
Starting - finishing date:
2021 - 2025
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