Resilience and quality of life in young adults with a 22q11.2 deletion syndrome: a patient’s perspective

Abstract

In the transition period between adolescence and young adulthood, individuals with 22q11.2DS are at an increased risk of developing severe psychiatric disorders. Various studies have focused on detecting risk factors, but until now protective factors are still understudied in 22q11.2DS. The current case–control study focuses on the role of resilience and quality of life (QoL) in young adults with 22q11.2DS and behavioural problems, in comparison with persons with an intellectual disability (ID) without a known genetic disorder. Self-report (and caregiver report) standardized questionnaires were used. Predictive general linear models were constructed to compare the resilience and quality of life across both groups (22q11.2DS vs ID-group) and to analyse the association between personal characteristics in both groups. Young adults with a 22q11.2DS show less resilience compared with both the general population norms and young adults with ID. Only a subscale of resilience (Acceptance of self and life) contributes to the reported level of QoL. Reported health problems are not related to resilience, but have an important effect on QoL. Our results suggest different factors are underlying resilience and the relation with QoL in 22q11.2DS and ID in general. These factors deserve more research and are important to take into account in clinical practice.

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Acknowledgements

We thank all the participants and their parents/caregivers for their willingness to participate in this study and Ine Verheyen for collecting the data.

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Correspondence to Kris Van de Woestyne.

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The authors declare that they have no conflict of interest.

Ethical approval

This study was approved by the Research Medical Ethics Committee UZ / KU Leuven (Belgium), S52418.

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Informed consent was taken from all the participants prior to their inclusion in the study.

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Van de Woestyne, K., Vandensande, A., Vansteelandt, K. et al. Resilience and quality of life in young adults with a 22q11.2 deletion syndrome: a patient’s perspective. Eur Child Adolesc Psychiatry (2021). https://doi.org/10.1007/s00787-021-01822-6

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Keywords

  • 22q11.2 deletion syndrome
  • Resilience
  • Quality of life
  • Behavioural problems
  • Intellectual disability