Quality of life in families and children with medical complexity
Introduction. Specialized units for children with medical complexity (CMC) aim to improve the quality of life of these patients. The objective of this study is to analyze the characteristics of patients and families evaluated in a recently created CMC specialized unit, as well as factors related to their quality of life. Population and methods. Analytical cross-sectional study that included CMCs seen in a monographic consultation between 2020 and 2024. Clinical data were collected, and parents completed a questionnaire with questions taken from quality-of-life scales. Results. We included 60 of the 217 children who were seen. The mean age was 7.18 years. 68.3% were male. 41.7% had cerebral palsy; 38.3% were dependent on technical support. About the questions, 11/19 related to parents and 1/12 related to patients showed negative answers. Risk factors were non-Spanish origin, behavioral disorders, and sleep disturbances. Conclusions. Our results showed different perspectives on quality of life between CMCs and their families, identifying origin, behavior, and sleep as risk factors.
Authors
- Azucena Retuerta Oliva
- Enrique Villalobos‐Pinto (ORCID: https://orcid.org/0000-0002-9257-0515)
- Rodrigo Jiménez‐García (ORCID: https://orcid.org/0000-0001-5906-9393)
- María Suárez‐Bustamante Huélamo (ORCID: https://orcid.org/0009-0002-8344-8427)
- Pablo Gómez Garrido (ORCID: https://orcid.org/0000-0002-8730-4597)
Institutions
- Hospital Infantil Universitario Niño Jesús (ES)
- Madrid Health Service (ES)
Publication Details
- Journal
- Archivos Argentinos de Pediatria
- Published
- 2025-08-14
- DOI
- https://doi.org/10.5546/aap.2025-10676.eng
- Primary Topic
- Child and Adolescent Health
- Type
- article
- Field-Weighted Citation Impact
- 0.00