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 health-related quality of life (HRQOL) in hospital-based care and hospital-based home care (HBHC), 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 HRQOL 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 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 HRQOL. 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 = .012). Irrespective of the form of care, children reported more discomfort of the disease than their parents reported that the children would have (p = .017).

Conclusion: Overall, the result indicates that both hospital-based care and HBHC provide equivalent outcomes in terms of the children’s diabetes-specific HRQOL. 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.

Keywords:

• Children
• HBHC
• HRQOL
• parents
• Type 1 diabetes

Acknowledgements

We thank healthcare professionals at the paediatric department and the staff at the Family House. We are most grateful to the families who participated in the study.

ORCID

Ann-Cathrine Bramhagen http://orcid.org/0000-0002-0979-3049

Irén Tiberg http://orcid.org/0000-0001-6057-491X

Additional information

Funding

This study was supported by the Swedish Institute for Health Sciences and the Faculty of Medicine at Lund University, the Swedish Research Council (Dnr: 521-2013-2633 project nr: K2014-99X-22564-01-4), the Swedish Diabetes Foundation and the Region of Skåne (Dnr: 2011/1816).