Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 May 12;47(1):110.
doi: 10.1186/s13052-021-01059-8.

Children with medical complexity and paediatric palliative care: a retrospective cross-sectional survey of prevalence and needs

S Amarri  1 , A Ottaviani  2 , A Campagna  3 , L De Panfilis  4 ; Emilia Romagna paediatric palliative care working group
Collaborators, Affiliations

Children with medical complexity and paediatric palliative care: a retrospective cross-sectional survey of prevalence and needs

S Amarri et al. Ital J Pediatr. .

Abstract

Background: Children with medical complexity (CMC) have been defined (Cohen et al., Pediatrics 127: 529-538, 2011.) as an emerging population potentially eligible for PPC. The current study investigated the prevalence of children with medical complexities eligible for a local palliative care network, including a paediatric hospice.

Methods: A retrospective cross-sectional survey has been conducted using children clinical charts from 14 local health authorities of our region (Emilia Romagna, Italy).

Results: The total number of children with life-limiting conditions was 601, with a mean age of 7.4 ± 4.8 years, a prevalence of 8.4/10.000 residents < 19 years of age and a heterogeneous presentation among the provinces in the region. Neurological diseases affect 51% of patients, followed by congenital diseases (21%) and pathologies originating in the perinatal period (6%), while only 4% of the patients had a cancer diagnosis. Patients are dependent from many devices and supports: 32% had a gastrostomy, 22% a respiratory support and 15% of patients had both of them.

Conclusions: Observed regional prevalence of complex needs is lower than that published from other European countries. More research is needed to raise awareness of palliative care for children with medical complexities in order to address specific needs.

Keywords: Children with medical complexity; Hospices; Needs assessment; Paediatrics; Palliative care; Prevalence.

PubMed Disclaimer

Conflict of interest statement

The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Fig. 1
Fig. 1
ICD9 main subgroup diagnosis among patients
Fig. 2
Fig. 2
Percentage of children receiving care from different health professionals
Fig. 3
Fig. 3
Impact of different ACCAPED domains on patient complexity
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Sisk BA, Feudtner C, Bluebond-Langner M, Sourkes B, Hinds PS, Wolfe J. Response to suffering of the seriously ill child: a history of palliative Care for Children. Pediatrics. 2020;145(1):e20191741. doi: 10.1542/peds.2019-1741. - DOI - PMC - PubMed
    1. World Health Organization. WHO definition of palliative care for children. Available from URL: https://www.who.int/cancer/palliative/definition/en/. Accessed 12 Oct 2020.
    1. Connor SR, Downing J, Marston J. Estimating the global need for palliative care for children: a cross- sectional analysis. J Pain Symptom Manage. 2017;53(2):171–177. doi: 10.1016/j.jpainsymman.2016.08.020. - DOI - PubMed
    1. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bahgat SKM, Simon TD, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127(3):529–538. doi: 10.1542/peds.2010-0910. - DOI - PMC - PubMed
    1. LEGGE 15 marzo 2010, n. 38. Disposizioni per garantire l'accesso alle cure palliative e alla terapia del dolore. Available from URL: http://www.parlamento.it/parlam/leggi/10038l.htm (2010). Accessed 12 Sept 2020.