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Original research
Non-invasive respiratory support in children and young adults with complex medical conditions in pediatric palliative care
  1. Brigitte Fauroux1,
  2. Jessica Taytard2,
  3. Iulia Ioan3,
  4. Marc Lubrano4,
  5. Laurence Le Clainche5,
  6. Plamen Bokov6,
  7. Benjamin Dudoignon7,
  8. Stephane Debelleix8,
  9. Francois Galode8,
  10. Laurianne Coutier9,
  11. Elodie Sigur10,
  12. Geraldine Labouret10,
  13. Morgane Ollivier11,
  14. Alexandra Binoche12,
  15. Jean Bergougnioux13,
  16. Blaise Mbieleu14,
  17. Aben Essid15,
  18. Eglantine Hullo16,
  19. Audrey Barzic17,
  20. Johan Moreau18,19,
  21. Mikael Jokic20,21,
  22. Sophie Denamur22,
  23. Guillaume Aubertin23,
  24. Cyril Schweitzer24
  25. of the NIV Group of the French Society of Pediatric Pulmonology and Allergy (Société Pédiatrique de Pneumologie et Allergologie (SP2A))
    1. 1 Pediatric Noninvasive Ventilation and Sleep Unit, AP-HP, Hôpital Necker-Enfants Malades, Paris, France
    2. 2 Pediatric Pulmonology, Hopital Armand-Trousseau, Paris, Île-de-France, France
    3. 3 CHRU de Nancy, Nancy, Lorraine, France
    4. 4 CHU Rouen, Rouen, Normandie, France
    5. 5 Pediatric Pulmonology, CHU Robert Debre, Paris, France
    6. 6 CHU Robert Debre, Paris, France
    7. 7 Hôpital Robert Debré, Reims, France
    8. 8 CHU Bordeaux GH Pellegrin, Bordeaux, Aquitaine, France
    9. 9 CHU Lyon, Lyon, Auvergne-Rhône-Alpes, France
    10. 10 CHU Toulouse, Toulouse, Midi-Pyrénées, France
    11. 11 CHU Angers, Angers, Pays de la Loire, France
    12. 12 CHRU Lille Pôle Spécialités Médicochirurgicales, Lille, Hauts-de-France, France
    13. 13 Hôpital Raymond-Poincare, Garches, Île-de-France, France
    14. 14 PICU, Hopital Raymond-Poincare, Garches, France
    15. 15 Hopital Raymond-Poincare, Garches, Île-de-France, France
    16. 16 CHU Grenoble Alpes Hôpital Couple Enfant, La Tronche, Rhône-Alpes, France
    17. 17 Department of Paediatrics, University and Regional Hospital Centre Brest, Brest, Bretagne, France
    18. 18 Paediatric Pulmonology and Cardiology Department, Montpellier University Hospital, Montpellier, France
    19. 19 University of Montpellier, Montpellier, France
    20. 20 Pediatric Intensive Care Unit, Centre Hospitalier Universitaire de Caen, Caen, France
    21. 21 Department of Pediatrics, Centre Hospitalier Universitaire de Caen, Caen, Basse-Normandie, France
    22. 22 Hopital Armand-Trousseau, Paris, Île-de-France, France
    23. 23 Pediatric Pulmonology, Armand-Trousseau Childrens Hospital, Paris, Île-de-France, France
    24. 24 CHU Nancy Pôle Médico-chirurgical Central, Nancy, Lorraine, France
    1. Correspondence to Professor Brigitte Fauroux; brigitte.fauroux{at}aphp.fr

    Abstract

    Objective Dyspnoea and sleep-disordered breathing (SDB) are common in children with life-limiting conditions but studies on treatment with non-invasive ventilation (NIV) or continuous positive airway pressure (CPAP) are scarce. The aim of the study was to describe children treated with long-term NIV/CPAP within a paediatric palliative care programme in France.

    Methods Cross-sectional survey on children and young adults with complex medical conditions treated within the French paediatric NIV network with long-term NIV/CPAP. Characteristics of the patients were analysed and patient-related outcome measures of NIV/CPAP benefit were reported.

    Results The data of 50 patients (68% boys), median age 12 (0.4–21) years were analysed. Twenty-three (46%) patients had a disorder of the central nervous system and 5 (10%) a chromosomal anomaly. Thirty-two (64%) patients were treated with NIV and 18 (36%) with CPAP. NIV/CPAP was initiated on an abnormal Apnoea-Hypopnoea Index in 18 (36%) of the patients, an abnormal nocturnal gas exchange alone in 28 (56%), and after an acute respiratory failure in 11 (22%) of the patients. Mean objective NIV/CPAP adherence was 9.3±3.7 hours/night. NIV/CPAP was associated with a decrease in dyspnoea in 60% of patients, an increase in sleep duration in 60% and in sleep quality in 74%, and an improvement in parents’ sleep in 40%.

    Conclusions In children with life-limiting conditions, long-term NIV/CPAP may be associated with relief of dyspnoea, an improvement of SDB and an improvement in parents’ sleep.

    • Palliative Care
    • Paediatrics
    • Pain
    • Respiratory Medicine
    • Sleep

    Data availability statement

    Data are available upon reasonable request. Data are available on request.

    https://doi.org/10.1136/archdischild-2023-326782

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      Data availability statement

      Data are available upon reasonable request. Data are available on request.

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      Footnotes

      • X @Fauroux

      • Collaborators Arnaud Becourt, CH Amiens, Amiens; Mariam Mouydi, CH d’Aix en Provence, Aix en Provence; Alice Ladaurade, CHU de Besançon, Besançon; Stéphanie Bui, CHU de Bordeaux, Bordeaux; Pierrick Cros, CHU de Brest, Brest; Guillaume Labbé, CHU de Clermont Ferrand, Clermont Ferrand; Marie Emilie Lampin, Clemence Mordacq, CH Lille, Lille; Alexandra Masson, Pauline Hangard, CHU de Limoges, Limoges; Nathalie Stremler, Melisande Baravalle-Einaudi, Hôpital La Timone, Marseille; Marie Catherine Renoux, Stefan Matecki, CHU de Montpellier, Montpellier; Emmanuelle Fleurence, ESEAN-APF, Nantes, France; Agnes Fina, Lisa Giovannini-Chami, CHU de Nice, Nice; Sonia Khirani, Lucie Griffon, Hôpital Necker Enfants malades, Paris; Véronique Diaz, CHU de Poitiers, Poitiers; Michael Pomedio, CHU de Reims, Reims; Rachel Heyman, CHU de Rennes, Rennes; Elsa Gachelin, Caroline Perisson, Anne Pervillé, CHU de Saint Denis, La Réunion; Audrey Breining, CHU de Strasbourg, Strasbourg; Aline Genevois, CHU de Toulouse, Toulouse.

      • BF is responsible for the entire content of the manuscript. BF made the design of the study, and wrote the first and last versions of the manuscript. All the coauthors approved and validated the information sheet, collected the data of their patients, and contributed to and approved the final version of the manuscript.

      • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

      • Competing interests None declared.

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