Parent/carer and patient understanding of cardiac toxicity post
chemotherapy – a qualitative study
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.