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Original research
Access to paediatric palliative care in children and adolescents with complex chronic conditions: a retrospective hospital-based study in Brussels, Belgium
  1. Marie Friedel1,2,
  2. Aurélie Gilson1,
  3. Dominique Bouckenaere3,
  4. Bénédicte Brichard3,4,
  5. Christine Fonteyne3,5,
  6. Thomas Wojcik3,
  7. Etienne De Clercq1,
  8. Alain Guillet6,
  9. Alaa Mahboub1,
  10. Magali Lahaye1,7,
  11. Isabelle Aujoulat1,8
  1. 1 Institute of Health and Society, Université catholique de Louvain, Brussels, Belgium
  2. 2 Nursing Department, Haute Ecole Léonard de Vinci Parnasse–ISEI, Brussels, Belgium
  3. 3 Fédération Bruxelloise Pluraliste de Soins Palliatifs, Brussels, Belgium
  4. 4 Paediatric Hematology-Oncology and Paediatric liaison team Interface Pédiatrique, Cliniques universitaires Saint-Luc, Brussels, Belgium
  5. 5 Paediatric liaison team Globul'home, Hôpital universitaire des Enfants Reine Fabiola, Brussels, Belgium
  6. 6 Statistical Methodology and Computing Service (SMCS), Institute LIDAM, Université catholique de Louvain, Louvain-la-Neuve, Belgium
  7. 7 Paediatric Haematology/Oncology, Cliniques universitaires Saint-Luc, Brussels, Belgium
  8. 8 Faculté de Santé Publique, Université catholique de Louvain, Brussels, Belgium
  1. Correspondence to Marie Friedel; marie.friedel{at}uclouvain.be

Abstract

Background Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown.

Objectives The aim of the study was to identify, over a 5-year period (2010–2014), the number of children and adolescents (0–19 years) living with a CCC, and also their referral to PLTs.

Methods International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics.

Results Over 5 years (2010–2014) in the Brussels region, a total of 22 721 children/adolescents aged 0–19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT.

Conclusion In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.

  • Children
  • Multiple chronic conditions
  • Health services accessibility
  • Referral and Consultation
  • Registries

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors MF, AGi, DB, IA, ML, BB, CF and EDC designed the study and contributed to the analysis and interpretation of the data, and reviewed and revised the manuscript. IA supervised the data collection and analysis and critically reviewed the manuscript for important intellectual content. MF drafted the initial manuscript and coordinated the data collection and analysis. AGu and AM contributed to the data analysis. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

  • Funding We would like to thank Fondation Contre le Cancer, which funded this study through a grant to Fédération Bruxelloise pluraliste de Soins palliatifs et Continus.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The study was conducted in accordance with Belgium’s legal and ethical requirements for the collection of personal data. Approval was obtained on 29 Feb 2016 from the Data Protection Authority and on 20 Sep 2016 from the Sectoral Committee for Social Security and Health (no. CSSSS/16/193). In addition, the Sectoral Committee for Social Security and Health requested that minor cell-risk analysis be conducted by the Intermutualistic Agency; this took place on 17 Aug 2016. Finally, approval was granted by the ethical committees at each of the eight participating hospitals.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available in a public, open-access repository. Data are available on reasonable request. Data may be obtained from a third party and are not publicly available. All data relevant to the study are included in the article or uploaded as online supplementary information.

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