Congenital Central Hypoventilation Syndrome (CCHS): Patient Quality of Life and Caregiver Burden
CCHS QoL scores are depressed compared to healthy individuals. This study identified specific domains of QoL and caregiver burden most impacted by CCHS, revealed a relationship between age and QoL in CCHS, and finances and burden in caregivers. Results offer targets for future interventions to enhance QoL in CCHS and reduce caregiver burden. Further work is needed to elucidate the relationship between CCHS impact and disease- and treatment-specific factors.
Authors
- Narayanan Krishnamurthi (ORCID: https://orcid.org/0000-0002-0174-8737)
- Debra E. Weese‐Mayer (ORCID: https://orcid.org/0000-0001-6061-220X)
- Casey M. Rand (ORCID: https://orcid.org/0000-0003-1077-8978)
- Bruno Massenavette
- Melinda Riccitelli
- Martin Samuels (ORCID: https://orcid.org/0000-0002-9811-8335)
- Marie‐Emilie Lampin
- Ajay S. Kasi (ORCID: https://orcid.org/0000-0003-0435-2807)
- Claire Loire
- Julien Pelissou
- Xenia Proton de la Chapelle
- Linda Dokas
Institutions
- Northwestern University (US)
- Lurie Children's Hospital (US)
- Emory University (US)
- Great Ormond Street Hospital (GB)
- Hospices Civils de Lyon (FR)
- Children's Healthcare of Atlanta (US)
- MNM Consulting (France) (FR)
- University College London (GB)
Publication Details
- Journal
- Pediatric Pulmonology
- Published
- 2025-03-01
- DOI
- https://doi.org/10.1002/ppul.71012
- Primary Topic
- Neuroscience of respiration and sleep
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- National Institutes of Health
- National Center for Advancing Translational Sciences