Health-related quality of life in children with Type 1 diabetes: an RCT of hospital-based care and hospital-based home care at diagnosis

Abstract

Introduction: When a child is diagnosed with type 1 diabetes it involves extensive lifestyle changes for the whole family. There is limited knowledge of the impact the initial care has for children and parents over time. The aim was to compare children's diabetes-specific healthrelated quality of life in hospital-based care and hospital-based home care, 12 and 24 months after the onset of type 1 diabetes. The aim was also to compare the children's and parents' proxy-report of the children's diabetes-specific health-related quality of life after 12 and 24 months, regardless of the form of care. Method: The trial took place at a university hospital in Sweden and had a randomised controlled design evaluating the hospital-based care and hospital-based home care (HBHC), referring to specialist care in a home-based setting. Children aged 5-16 and their parents answered the PedsQL TM 3.0 Diabetes Module, 12 months and 24 months after the onset of the illness. Results: The results showed no difference regarding the children's diabetes-specific healthrelated quality of life. However, 12 months from diagnosis, the children and parents who received HBHC experienced more worry than those who had received hospital-based care at diagnosis (p = 0.012). Irrespective of the form of care, children reported more discomfort of the disease than their parents reported that the children would have (p = 0.017). Conclusion: Overall, the result indicates that both hospital-based care and HBHC provide equivalent outcomes in terms of the children's diabetes-specific health-related quality of life. However, a more home-based model of care might put more strain on some families. Those families need to be identified and the routines should be flexible in order to meet each family's need.

Implementation of discharge recommendations in type 1 diabetes depends on specialist nurse follow‐up

“…In the present study, parents reported that the children had lower overall diabetes‐specific health‐related quality of life than the children themselves, a result that was also found previously in a similar population in Sweden . In the RCT, both children's reports and parents’ proxy reports of the diabetes‐specific health‐related quality of life had mean values of 73.3–76.4 ± 9.0–12.6 over the two‐year follow‐up . In comparison with these previous results on diabetes‐specific health‐related quality of life, an interpretation might be that parents generally reported similar or lower values (mean 71.8–73.5 ± 15.5–16.8) and children reported similar or higher values in the real‐life HBHC over the two‐year follow‐up (78.0–81.5 ± 8.3‐15.6).…”