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Parent/carer and patient understanding of cardiac toxicity post chemotherapy – a qualitative study
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  • Claudia Toro,
  • MIchael Sullivan,
  • Kanika Bhatia,
  • David Elliott,
  • A/Prof Rachel Conyers**
Claudia Toro
The Royal Australasian College of Physicians
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MIchael Sullivan
The Royal Australasian College of Physicians
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Kanika Bhatia
The Royal Australasian College of Physicians
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David Elliott
Murdoch Children's Research Institute Heart Research Group
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A/Prof Rachel Conyers**
The Royal Australasian College of Physicians

Corresponding Author:rachel.conyers@mcri.edu.au

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Abstract

Background: With more patients reaching survivorship, cardiovascular disease and its complications are posing an emerging problem for both oncologists and cardiologists [(1)](#ref-0001). There is a paucity of data on parent/carer or patient understanding of cardiotoxicity as a consequence of cancer therapy nor do we know the educational needs as identified by them. Objective: To determine the understanding of the long-term cardiac effects of therapy from a patient and carer perspective and what educational tools are seen as valuable. Method: This is a qualitative study using grounded theory and inductive thematic analysis. Participants were sampled from Australian Cardio-Oncology Registry Study at The Royal Children’s Hospital, Melbourne Australia and was HREC approved. Patient and parents/carers of children aged 1-18 years old who had been diagnosed with cancer were invited to participate. Semi-structured interviews were conducted via Zoom, with interviews being recorded and then transcribed to allow for thematic analysis. Findings: Twenty-one participants were recruited, with one participant being a young adult cancer survivor. A basic awareness of cardiac toxicity was expressed by all participants. Themes of feeling overwhelmed on diagnosis with poor information retention was common. Revisiting these conversations with preference for long-term side effects being discussed closer to end of treatment was highlighted as well as the provision of survivorship plans. Trust in primary physicians was a prominent theme, with most participants expressing desire to seek information from their treating team as well as hospital electronic resources. Conclusion: Better understanding of the educational needs of families of childhood cancer patients and survivors around cardiac risk and toxicity supports a family-centred approach to care.