Paediatric Moderate to Severe Injury to the Central Nervous System: Patients' and Caregivers' Experiences of Medical Complications and Related Healthcare Needs.

PURPOSE: Few studies describe medical complications after central nervous injury in children and adolescents as a whole, with a focus on their consequences for patients and their caregivers. This study explores the frequency and effects of medical complications on such children and youth, as well as their caregivers, after discharge from a tertiary rehabilitation centre.

MATERIALS AND

METHODS

This questionnaire-based study included 151 patients aged 2-18 years admitted to a tertiary rehabilitation centre due to acquired injury to the central nervous system in the years 2016-2021.

RESULTS

Seventy answers were retrieved between 11 and 85 months post-injury. The majority of the patients (67%) had experienced medical complications following their central nervous system injury. The most frequent complications were sleep difficulties (39%), pain (26%), spasticity (26%), constipation (22%) and overweight (17%). There were no substantial differences related to gender, age, or diagnosis group. Frequency of complications and length of rehabilitation stay were associated with an increase of 4% for each additional day of admission. Those reporting medical complications more frequently used medication for the same complications during subacute rehabilitation. They also tended to have more serious injuries. Just above a quarter of those reporting medical complications needed hospital admission and/or surgery, while the majority could be treated at a lower healthcare level. The majority answered that the complications were time consuming and had consequences for the ability to perform everyday tasks and the capacity to participate in leisure activities. The complications' psychological impact was also highlighted.

CONCLUSION

Medical complications occur frequently in children/youth who have sustained an injury to the central nervous system that requires inpatient rehabilitation. They have consequences for multiple aspects of the patient's life, even years after discharge from the rehabilitation institution.