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. 2023 Sep;182(9):3805-3831.
doi: 10.1007/s00431-023-05050-9. Epub 2023 Jun 15.

Hospital-to-home transitions for children with medical complexity: part 1, a systematic review of reported outcomes

Annemieke de Lange  1 , Mattijs W Alsem  2 , Heleen N Haspels  1   3 , Clara D M van Karnebeek  4 , Job B M van Woensel  1 , Faridi S Etten-Jamaludin  5 , Jolanda M Maaskant  6
Affiliations

Hospital-to-home transitions for children with medical complexity: part 1, a systematic review of reported outcomes

Annemieke de Lange et al. Eur J Pediatr. 2023 Sep.

Abstract

Outcome selection to evaluate interventions to support a successful transition from hospital to home of children with medical complexity (CMC) may be difficult due to the variety in available outcomes. To support researchers in outcome selection, this systematic review aimed to summarize and categorize outcomes currently reported in publications evaluating the effectiveness of hospital-to-home transitional care interventions for CMC. We searched the following databases: Medline, Embase, Cochrane library, CINAHL, PsychInfo, and Web of Science for studies published between 1 January 2010 and 15 March 2023. Two reviewers independently screened the articles and extracted the data with a focus on the outcomes. Our research group extensively discussed the outcome list to identify those with similar definitions, wording or meaning. Consensus meetings were organized to discuss disagreements, and to summarize and categorize the data. We identified 50 studies that reported in total 172 outcomes. Consensus was reached on 25 unique outcomes that were assigned to six outcome domains: mortality and survival, physical health, life impact (the impact on functioning, quality of life, delivery of care and personal circumstances), resource use, adverse events, and others. Most frequently studied outcomes reflected life impact and resource use. Apart from the heterogeneity in outcomes, we also found heterogeneity in designs, data sources, and measurement tools used to evaluate the outcomes. Conclusion: This systematic review provides a categorized overview of outcomes that may be used to evaluate interventions to improve hospital-to-home transition for CMC. The results can be used in the development of a core outcome set transitional care for CMC.

Keywords: Core outcome set; Reported outcomes; Systematic review; Transitional care - children with medical complexity.

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Conflict of interest statement

The authors have no conflict of interest relevant to this article to disclose.

Figures

Fig. 1
Fig. 1
Study selection process
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References

    1. Yamada H, Ohno K, Shiota M, Togawa M, Utsunomiya Y, Akaboshi S, Tsuchie H, Okada T, Oguri M, Higami S, Noma H, Maegaki Y. Prevalence and clinical characteristics of children with medical complexity in Tottori Prefecture, Japan: A population-based longitudinal study. Brain Dev. 2020;42(10):747–755. doi: 10.1016/j.braindev.2020.06.008. - DOI - PubMed
    1. Fraser LK, Gibson-Smith D, Jarvis S, Norman P, Parslow RC. Estimating the current and future prevalence of life-limiting conditions in children in England. Palliat Med. 2021;35(9):1641–1651. doi: 10.1177/0269216320975308. - DOI - PMC - PubMed
    1. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, Srivastava R. 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. Kuo DZ, Melguizo-Castro M, Goudie A, Nick TG, Robbins JM, Casey PH. Variation in child health care utilization by medical complexity. Matern Child Health J. 2015;19(1):40–48. doi: 10.1007/s10995-014-1493-0. - DOI - PMC - PubMed
    1. Leyenaar JK, Schaefer AP, Freyleue SD, Austin AM, Simon TD, Van Cleave J, Moen EL, O'Malley AJ, Goodman DC (2022) Prevalence of children with medical complexity and associations with health care utilization and in-hospital mortality. JAMA pediatrics 176(6):e220687. 10.1001/jamapediatrics.2022.0687 - PMC - PubMed

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