Complex Chronic Conditions in Rhode Island's Pediatric Populace: Implications for Palliative and Hospice Services, 2000–2012

Abstract

CCCs constitute a significant proportion of medically related pediatric deaths in Rhode Island and are associated with both secondary comorbidities and death at home. Specialized, multidisciplinary services are warranted and PP/HC is crucial for patient and family support.

Epidemiology of Children With Multiple Complex Chronic Conditions in a Mixed Urban-Rural US Community

“…22,23 Despite the burden of MCCs on children, families, communities, and health care systems, the epidemiological assessment of children with MCCs within a geographically defined pediatric US population has not been previously performed. Although valuable, the extant literature is limited to cohorts derived from databases originating from health care use,* payer source, 4,[7][8][9][10]14,20,[30][31][32][33] death certificates, [34][35][36][37] and national surveys. 38,39 Furthermore, the reported prevalence for chronic disease in children is widely variable (0.2%-44%) because of considerable heterogeneity in study definitions, designs, populations, and conditions.…”

Repercussões dos cuidados paliativos pediátricos: revisão integrativa

“…The study also showed that most deaths occur in emergency units or at home, while a small number in palliative care institutions, which reflects the scarcity of this type of service 17 . However, the insufficient documentation to clarify PPC offer and the types of intervention can be pointed out as a limitation of this cohort study that started from inferences based on death certificates 17 .…”

“…Four articles included in the sample were published in 2014 10,18,19,21 , two in 2015 13,17 , five in 2016 15,16,20,22,23 , two in 2017 12,14 and one in 2018 11 . All studies were produced outside Brazil.…”

“…All studies were produced outside Brazil. Six of them were published in Journal of Palliative Medicine 10,14,15,17,20,21 , two in Pediatric Clinics of North America 18,19 , two in BMC Palliative Care 11,23 and the others in Palliative Medicine 12 , Annali dell'Istituto Superiore di Sanità 22 , Journal of Pain and Symptom Management 16 and Pediatrics 13 .…”

“…Perinatal conditions and genetic and congenital abnormalities can affect several organs and produce other comorbidities. The diversity of these conditions reinforces the need for an interdisciplinary approach, helping families deal with possible complications and to adapt the home appropriately 17 .…”