Neuropediatrics 2012; 43 - WS26_01
DOI: 10.1055/s-0032-1307178

Long-term Outcome after Vegetative State due to Near-Drowning and Quality of Life of the Families

G Kluger 1, 2, A Kirsch 1, M Hessenauer 1, M Granel 1, A Müller 1, O Lahl 1, S Berweck 1, M Staudt 1, C von Stülpnagel 1
  • 1Klinik für Neuropädiatrie und Neurologische Rehabilitation, Epilepsiezentrum für Kinder und Jugendliche, Schön Klinik Vogtatreuth, Germany
  • 2Paracelsus Medical University, Salzburg, Austria

Aims: Discussions between intensive care, rehabilitation and palliative care concerning children in vegetative state lack information about the long-term prognosis and QoL of their families.

Methods: At two different time points, we investigated long-term outcome and QoL of the families of 85 children, who were in VS 4 weeks after a near-drowning event, and who were transferred for early-phase rehabilitation in the years 1986–2001:

Assessment 1 (A1) was performed in 2001 as anonymous questionnaire with 77 items; assessment 2 (A2) was performed in 2010–2011 as structured telephone interview (GK) with both parents separately; additional interviews were carried concerning outcome (MH).

Results: Response rate of A1: 53%; mean follow-up: 5 years; parents separated: 17%. A2 in 53/85 children (62%) and 99 parents with a mean follow-up of 15 years; parents separated: 29%. Outcome (A2); (niveaus according to Remi-Pro®): 14 children had died (26%), 5 were in sleep-wake niveau (9%), 10 in perception niveau (19%), 13 in communication niveau (24%), 2 in independence niveau (4%), 4 in group niveau (7%), and 5 in participation niveau (9%). Many parents reported persisting feelings of guilt. When asked whether it would have been better that their child had died immediately after the accident despite resuscitation, at A2 8/99 parents (59%) answered no (A1: 51%). Different aspects of QoL correlated with outcome and feeling of guilt, but – independent of the outcome in their children – the majority of parents reported a high level of satisfaction (A2: 87% very or rather satisfied) with their lives.

Conclusion: Our results are in accordance with other investigations of a non-linear relationship between physical health status and QoL. These results can be useful for the individual planning of neurorehabilitation in children with severe acquired brain injuries and can have an impact on ethical aspects in medical decision making. Most importantly, our results support rehabilitation professionals in communicating confidence that long-term QoL of families with children in VS is often good.

vegatative state - near-drowning: quality of life - QoL - long-term-outcome