Specialized Pediatric Palliative Care in Neonates with Life-Limiting Illness: A Systematic Review

Abstract

Objective The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care. Study design MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Randomized clinical trials, experimental or observational studies, and secondary administrative database analyses published in English, Spanish, French, and German were included. Two independent reviewers extracted data, and used the Newcastle-Ottawa Scale and the Cochrane Risk of Bias Tool for quality analysis. Discrepancies were resolved as a team. Results From the 37,788 records obtained, only eight articles met the inclusion criteria. A meta-analysis was not possible due to the heterogeneity in how the outcomes were defined; however, a qualitative synthesis of the results was possible; organizing outcomes into eight different categories: psychological, social and spiritual support; communication; location of care; symptom management; bereavement care; predicted versus actual neonatal outcomes; and parental coping, stress, and satisfaction. Conclusion Specialized versus may have an impact on neonates with life-limiting conditions and their families. More studies that evaluate the impact of specialized versus in neonates with sound statistical analysis is warranted.

International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS

“…According to the expected disease trajectory, medical conditions of eligibility for PPC have been classified into five categories (Table 2) (1,12). The fifth category involves unborn children with major health problems who may not live through birth, infants who may survive for only a few hours/days, infants with birth anomalies that may threaten vital functions, and infants for whom intensive care has been appropriately applied but developed an incurable disease (Table 2) (18,(26)(27)(28)(29)(30).…”

Quality Indicators in Pediatric Palliative Care: Considerations for Latin America

“…More than 80 indicators in PPC have been described in the literature, with a wide variation in the detailed definitions across studies [ 14 ]. To simplify literature findings, various systematic reviews have attempted to group quality indicators and outcomes into themes, with varying degrees of similarity between the themes proposed by the different systematized reviews [ 14 , 15 , 41 , 42 , 43 ]. The disharmony in PPC standards also gets carried into how distinctively they are presented between multiple PPC organizations or programs [ 11 , 12 , 44 , 45 , 46 , 47 , 48 ].…”

“…The disharmony in PPC standards also gets carried into how distinctively they are presented between multiple PPC organizations or programs [ 11 , 12 , 44 , 45 , 46 , 47 , 48 ]. For further reference, a list from a selected literature review of PPC standards of care ( Table S1 ) [ 11 , 12 , 44 , 45 , 46 , 47 , 48 ] and quality indicators ( Table S2 ) [ 14 , 15 , 41 , 42 , 43 ] are included as supplements.…”

“…Through a literature review, we summarized and categorized available PPC standards of care and quality indicators to match the level of development needed to achieve them (see Table 1 ) [ 11 , 12 , 14 , 15 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 ]. This list could be used as a reference to help PPC services in LA view the landscape of how these quality indicators and standards are applied internationally.…”

Impact of palliative care on end-of-life care and place of death in children, adolescents, and young adults with life-limiting conditions: A systematic review

“…Recent systematic reviews suggest that access to PC is associated with reduced time in hospital and less invasive treatments (Marcus et al, 2020;Tayloy et al, 2020;Zuniga-Villanueva et al, 2020). However, these reviews specifically evaluated the outcomes of specialist PC services, which were developed mainly in the USA, Canada, the UK, and across Europe (Knapp et al, 2011).…”