Publicaciones científicas

Mapping Paediatric Palliative Care Development in the WHO-European Region: Children Living in Low-Middle Income Countries Are Less Likely to Access It

08-may-2020 | Revista: Journal of Pain of Symptom Management

Natalia Arias-Casais  1 , Eduardo Garralda  2 , Juan José Pons  3 , Joan Marston  4 , Lizzie Chambers  5 , Julia Downing  6 , Julie Ling  7 , John Y Rhee  8 , Liliana de Lima  9 , Carlos Centeno  2

(1) ATLANTES Global Observatory of Palliative Care, Institute for Culture and Society, University of Navarra, Pamplona, Spain.
(2)  ATLANTES Global Observatory of Palliative Care, Institute for Culture and Society, University of Navarra, Pamplona, Spain.
(3)  ATLANTES Global Observatory of Palliative Care, Institute for Culture and Society, University of Navarra, Pamplona, Spain; Department of History, History of Art and Geography, University of Navarra.
(4)  Palliative Treatment for Children (PatchSA), South Africa.
(5)  Together for Short Lives, Bristol.
(6)  International Children's Palliative Care Network.
(7)  European Association for Palliative Care, Belgium.
(8)  ATLANTES Global Observatory of Palliative Care, Institute for Culture and Society, University of Navarra, Pamplona, Spain; Department of Neurology, Massachusetts General Hospital and Brigham and Women's Hospital, Harvard.
(9) ATLANTES Global Observatory of Palliative Care, Institute for Culture and Society, University of Navarra, Pamplona, Spain; Medical School; International Association for Hospice and Palliative Care, Houston, USA.


Background

Approximately 170,000 children in need of palliative care die every year in Europe without access to it. This field remains an evolving specialty with unexplored development.

Aim

To conduct the first regional assessment of paediatric palliative care development and provision using data from the EAPC Atlas of Palliative Care 2019.

Methods

Two surveys were conducted. The first one included a single question regarding paediatric palliative care service provision and was addressed by EAPC atlas informants.

The second one included ten specific indicators derived from an open-ended interview and rating process, a specific network of informants was enabled and used as respondents. Data were analysed and presented in maps.

Results

Data on paediatric palliative care service provision was gathered from 51/54 (94%) European countries. Additional data were collected in 34/54 (62%) countries. A total of 680 paediatric palliative care services were identified including: 133 hospices, 385 home-care services, and 162 hospital services.

Nineteen countries had specific standards and norms for the provision of paediatric palliative care. Twenty-two had a national association and fourteen countries offered education for either paediatric doctors or nurses. In seven countries, specific neonatal palliative care referral services were identified.

Conclusion

Paediatric palliative care provision is flourishing across the region, however development is less accentuated in low-middle income countries. Efforts need to be devoted to the conceptualization and definition of the models of care used to respond to the unmet need of paediatric palliative care in Europe.

The question whether specialized services are required or not should be further explored. Strategies to regulate and cover patients in need should be adapted to each national health system.

CITA DEL ARTÍCULO  J Pain Symptom Manage . 2020 May 8;S0885-3924(20)30249-9. doi: 10.1016/j.jpainsymman.2020.04.028

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