Pediatric complex chronic and life-limiting conditions in the Basque public health system: cross-sectional prevalence study

Yamada H, Ohno K, Shiota M, Togawa M, Utsunomiya Y, Akaboshi S, et al. Prevalence and clinical characteristics of children with medical complexity in Tottori Prefecture, Japan: a population-based longitudinal study. Brain Dev. 2020;42:747–55.

Article  PubMed  Google Scholar 

Cohen E, Patel H. Responding to the rising number of children living with complex chronic conditions. Can Med Assoc J. 2014;186:1199–200.

Article  Google Scholar 

Cohen E, Kuo DZ, Agrawal R, Berry J, Bhagat S, Simon T, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127:529–38.

Article  PubMed  PubMed Central  Google Scholar 

Benini F, Papadatou D, Bernadá M, Craig F, De Zen L, Downing J, et al. International standards for pediatric palliative care: from IMPaCCT to GO-PPaCS. J Pain Symp Manag. 2022;63:e529–43.

Article  Google Scholar 

Berry JG, Hall M, Cohen E, O’Neill M, Feudtner C. Ways to identify children with medical complexity and the importance of why. J Pediatr. 2015;167:229–37.

Article  PubMed  PubMed Central  Google Scholar 

Oliveira PV, Enes CC, Nucci LB. How are children with medical complexity being identified in epidemiological studies? A systematic review. World J Pediatr. 2023;19:928–38.

Article  PubMed  Google Scholar 

Hain R, Devins M, Hastings R, Noyes J. Pediatric palliative care: development and pilot study of a “Directory” of life-limiting conditions. BMC Palliat Care. 2013;12:43.

Article  PubMed  PubMed Central  Google Scholar 

Cochrane H, Liyanage S, Nantambi R. Palliative care statistics for children and young adults. Health and care partnerships analysis; 2007. https://webarchive.nationalarchives.gov.uk/ukgwa/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_074699.pdf. Accessed 15 Nov 2024.

Petitgout JM, Werner J, Stewart S. Pediatric complexity tool best practice alert: early identification of care coordination for children with special health care needs. J Pediatr Health Care. 2021;35:485–90.

Article  PubMed  Google Scholar 

Parente V, Parnell L, Childers J, Spears T, Jarrett V, Ming D. Point-of-care complexity screening algorithm to identify children with medical complexity. Hosp Pediatr. 2021;11:44–51.

Article  PubMed  PubMed Central  Google Scholar 

Leyenaar JK, Schaefer AP, Freyleue SD, Austin A, Simon T, Van Cleave J, et al. Prevalence of children with medical complexity and associations with health care utilization and in-hospital mortality. JAMA Pediatr. 2022;176:e220687.

Article  PubMed  PubMed Central  Google Scholar 

Kuo DZ, Melguizo-Castro M, Goudie A, Nick TG, Robbins JM, Caey PH. Variation in child health care utilization by medical complexity. Matern Child Health J. 2015;19:40–8.

Article  PubMed  PubMed Central  Google Scholar 

Canadian Institute for Health Information. Children and youth with medical complexity in Canada; 2020. https://www.cihi.ca/en/children-and-youth-with-medical-complexity-in-canada. Accessed 15 Nov 2024.

Cohen E, Berry JG, Sanders L, Schor EL, Wise PH. Status complexicus? the emergence of pediatric complex care. Pediatrics. 2018;141:s202–11.

Article  PubMed  Google Scholar 

Connor SR, Downing J, Marston J. Estimating the global need for palliative care for children: a cross-sectional analysis. J Pain Sym Manage. 2017;53:171–7.

Article  Google Scholar 

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;35:1641–51.

Article  PubMed  Google Scholar 

Jarvis S, Parslow RC, Carragher P, Beresford B, Fraser LK. How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study. Arch Dis Child. 2017;102:131–8.

Article  PubMed  Google Scholar 

Fraser LK, Gibson-Smith D, Jarvis S, Norman P, Parslow R. “Make every child count” estimating current and future prevalence of children and young people with life-limiting conditions in the United Kingdom.; 2020. https://www.togetherforshortlives.org.uk/resource/make-every-child-count/. Accessed 15 Nov 2024.

Fraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, et al. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012;129:e923-9.

Article  PubMed  Google Scholar 

Kim CH, Song IG, Kim MS, Lee JY, Lim NG, Shin HY. Healthcare utilization among children and young people with life-limiting conditions: exploring palliative care needs using National Health Insurance claims data. Sci Rep. 2020;10:2692.

Article  CAS  PubMed  PubMed Central  Google Scholar 

García de Paso Mora M [Coord.]. Programa de atención a niños, niñas y adolescentes con enfermedades crónicas complejas: tejiendo puentes para sus cuidados; 2019. https://www.ibsalut.es/docs/Plans_programes_estrategies/ES/programa%20cronicidad%20menores%20ESP.pdf. Accessed 15 Nov 2024.

Vilarrubí SN. The challenge of complex chronicity and palliative care in pediatrics. An Pediatr (Engl Ed). 2018;88:1–2.

Article  PubMed  Google Scholar 

Ministerio de sanidad. informe anual del sistema nacional de salud 2018: estrategias y acciones destacables. comunidad autónoma del país vasco.; 2020. https://www.sanidad.gob.es/estadEstudios/estadisticas/sisInfSanSNS/tablasEstadisticas/InfAnualSNS2018/16Pais_Vasco_2018.pdf. Accessed 15 Nov 2024.

Domínguez-Berjón MF, Borrell C, Cano-Serral G, Esnaola S, Nolasco A, Pasarín I, et al. Constructing a deprivation index based on census data in large Spanish cities: the MEDEA project. Gac Sanit. 2008;22:179–87.

PubMed  Google Scholar 

Simon TD, Haaland W, Hawley K, Lambka K, Mangione-Smith R. Development and Validation of the Pediatric Medical Complexity Algorithm (PMCA) Version 3.0. Acad Pediatr. 2018;18:577-580.

Article  PubMed  PubMed Central  Google Scholar 

Cohen E, Berry JG, Camacho X, Anderson G, Wodchis W, Guttmann A. Patterns and costs of health care use of children with medical complexity. Pediatrics. 2012;130:e1463-70.

Article  PubMed  PubMed Central  Google Scholar 

UNICEF. Salud Mental e Infancia En El Escenario de La COVID-19. Propuesta de UNICEF España.; 2022. https://www.unicef.es/publicacion/salud-mental-e-infancia-en-el-escenario-de-la-covid-19-propuestas-de-unicef-espana. Accessed 15 Nov 2024.

Perou R, Bitsko RH, Blumberg SJ, Pastor P, Ghandour RM, Gfroerer JC, Hedden SL, Crosby AE, Visser SN, Schieve LA, Parks SE, Hall JE, Brody D, Simile CM, Thompson WW, Baio J, Avenevoli S, Kogan MD, Huang LN; Centers for Disease Control and Prevention (CDC). Mental health surveillance among children--United States, 2005-2011. MMWR Suppl. 2013;62:1-35.

Article  Google Scholar 

Fraser L, Bedendo A, Jarvis S. Children with a life-limiting or life-threatening condition in wales: trends in prevalence and complexity; 2023. https://www.tyhafan.org/wp-content/uploads/2023/07/Prevalence-Complete-Report-2023.pdf. Accessed 15 Nov 2024.

Jarvis S, Richardson G, Flemming K, Fraser LK. Numbers, characteristics, and medical complexity of children with life-limiting conditions reaching age of transition to adult care in England: a repeated cross-sectional study. NIHR Open Res. 2022;2:27.

Article  PubMed Central  Google Scholar 

Serrano-Pejenaute I, Carmona-Nunez A, Zorrilla-Sarriegui A, Martin-Irazabal G, Lopez-Bayon J, Sanchez-Echaniz J, et al. How do hospitalized children die? The context of death and end-of-life decision-making. J Paediatr Child Health. 2023;59:625–30.

Article  PubMed  Google Scholar 

Heneghan JA, Goodman DM, Ramgopal S. Demographic and clinical differences between applied definitions of medical complexity. Hosp Pediatr. 2022;12:654–63.

Article  PubMed  Google Scholar 

Toulany A, Gorter JW, Harrison M. A call for action: Recommendations to improve transition to adult care for youth with complex health care needs. Pediatr Child Health (Canada). 2022;27:297–302.

Article  Google Scholar 

Yu JA, Bayer ND, Beach SR, Kuo DZ, Houtrow AJ. A National profile of families and caregivers of children with disabilities and/or medical complexity. Acad Pediatr. 2022;22:1489–98.

Article  PubMed  Google Scholar 

Pérez-Ardanaz B, Peláez-Cantero MJ, Morales-Asencio JM, Vellido-González C, Gómez-González A, León-Campos A, et al. Socioeconomic factors and quality of life perceived by parents and children with complex chronic conditions in Spain. Children (Basel). 2021;8:931.

PubMed  Google Scholar 

Comments (0)

No login
gif