Fighting to Breathe and Fighting for Health-Related Quality of Life: Measuring the Impact of Being Dependent on Technology for Breathing on the Child and Their Caregiver

• Published in: The patient : patient-centered outcomes research 2024-01, Vol.17 (1), p.65-82
• Main Authors: Verstraete, Janine, Booth, Christopher, Booth, Jane, Peer, Shazia, McGuire, Jessica, Kritzinger, Fiona, Gray, Taryn, Zibi, Noluthando, Shabangu, Primrose, Zampoli, Marco
• Format: Article
• Language: English
• Subjects: Age groups; Aged; Caregivers; Child; Child, Preschool; Children & youth; Congenital diseases; Decision making; Families & family life; Health Administration; Health Economics; Health Status; Humans; Medical technology; Medicine; Medicine & Public Health; Original; Original Research Article; Ostomy; Pediatrics; Pharmacoeconomics and Health Outcomes; Psychometrics; Public Health; Quality of Life; Quality of Life Research; Quantitative psychology; Rare diseases; Reproducibility of Results; Surveys and Questionnaires; Tracheotomy; Validity; Weaning
• ISSN: 1178-1653; 1178-1661; 1178-1661
• DOI: 10.1007/s40271-023-00657-4

Background and Objective Medical advancement has enabled children to survive congenital airway anomalies, rare diseases and critical illnesses with medical technology including tracheostomies and long-term ventilation to support breathing. This study aimed to assess (1) the validity of the EQ-TIPS and EQ-5D-Y-3L in children dependent on technology and (2) the impact of caring for these children on the EQ-5D-5L and CarerQoL. Methods Caregivers of children aged 1 month to 18 years completed the EQ-TIPS or EQ-5D-Y-3L, Pediatric Quality of Life Inventory (PedsQL) and Paediatric Tracheostomy Health Status Instrument (PTHSI) to reflect the child’s health. In addition, caregivers self-completed the EQ-5D-5L and CarerQoL. Reports of problems on EQ dimensions were compared across age groups with the Fisher’s exact test. Spearman and Pearson’s correlation coefficients and Kruskal–Wallis H-test were used to explore the association between caregiver and child scores, concurrent validity, and known-group validity of the EQ-TIPS and EQ-5D-Y-3L. Results Responses from 144 caregivers were collected, 66 for children aged 1 month to 4 years completing EQ-TIPS and 78 for children aged 5–18 years completing EQ-5D-Y-3L. The EQ-TIPS showed a higher report of no problems for social interaction for children aged 1–12 months ( p = 0.040) than the older age groups, there were however no differences in the level sum score (LSS) or EQ Visual Analogue Scale scores between the age groups. The EQ-5D-Y-3L showed a significantly less report of problems for mobility ( p = 0.013) and usual activities ( p = 0.006) for children aged 5–7 years compared with children aged 8–12 and children aged 13–18 years. Similarly, the 5–7 years of age group had a significantly lower EQ-5D-Y-3L LSS compared with the older groups (H = 12.08, p = 0.002). The EQ-TIPS and EQ-5D-Y-3L showed moderate-to-strong associations with the PedsQL. EQ-TIPS median LSS was able to differentiate between groups on the clinical prognosis with a better health-related quality of life (HRQoL) in those where weaning from technology is possible compared with those where weaning is not possible (H = 18.98, p = 0.011). The EQ-5D-Y-3L can discriminate between breathing technology, where those with only a tracheostomy reported better HRQoL (H = 8.92, p = 0.012), and between mild and moderate clinical severity (H = 19.42, p < 0.001). Neither the PedsQL nor the PTHSI was able to discriminate between these groups across the age range. Care