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Lessons from the family unit in paediatric heart transplantation: can we do better?
  1. Hanna J Tadros1,2,
  2. Alana R Rawlinson3,
  3. Dipankar Gupta1,2
  1. 1Department of Pediatrics, University of Florida, Gainesville, Florida, USA
  2. 2Congenital Heart Center, Department of Pediatrics, University of Florida, Gainesville, Florida, USA
  3. 3Department of Clinical and Health Psychology, University of Florida, Gainesville, Florida, USA
  1. Correspondence to Dr Dipankar Gupta, Congenital Heart Centre, Department of Pediatrics, University of Florida, Gainesville, Florida, USA; dgupta{at}ufl.edu

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Introduction

Paediatric heart transplantation (PHT) is the gold-standard treatment for children with end-stage heart failure. Despite advances in therapies, PHT affects the quality of life of recipients and their caregivers, regardless of frequent medical complications. In this viewpoint article, we will focus on ways to address the familial and psychosocial effects of PHT.

Despite documented psychosocial needs of PHT recipients, fewer than half of programmes have access to psychology services and only 20% have integrated providers.1 The responsibility often falls on the paediatrician and transplant team to garner support for families. To do so effectively, we must define the role of the medical team, follow evidence-based psychosocial screening and intervention approaches, and advocate for adequate services to support families.

Psychosocial risks to the patient and family

Psychological concerns have been identified in a substantial proportion of PHT recipients.1 2 A major concern is social functioning, which is exacerbated by negative internalising patterns of behaviour like social withdrawal and fearfulness.2 A substantial number of recipients, around 25%, have been shown to suffer from impaired psychosocial functioning.3 Up to a quarter of PHT recipients suffer from adjustment, anxiety and depressive disorders, and adolescent recipients carry a fivefold higher likelihood of generalised anxiety compared with their healthy counterparts.4 5 Not surprisingly, generalised anxiety correlates with illness-specific anxiety, including fear of poor health outcomes (eg, risk of rejection, need for re-transplantation, other post-transplant complications).5

Psychosocial impairment is not confined to the transplant recipient. High stress levels are prevalent in caregivers, with approximately 40% of …

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Footnotes

  • Contributors All authors conceptualised and designed the manuscript, aided in interpretation of data, drafted the initial manuscript, and reviewed and revised the manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Commissioned; externally peer reviewed.

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