What do patients understand about the information they receive during radiotherapy? — ASN Events
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  3. What do patients understand about the information they receive during radiotherapy?

What do patients understand about the information they receive during radiotherapy? (#464)

Haryana Dhillon 1 , Sian K. Smith 2 , Django Nathan 3 , Jennifer Taylor 3 , Eleni Van Gelder 4 , Georgia Halkett 5 , Ann Dixon 1 , Chris Milross 6
  1. Centre for Medical Psychology, Sydney Medical School, , University of Sydney, Sydney, NSW, Australia
  2. Prince of Wales Clinical School, University of New South Wales, Sydney, NSW, Australia
  3. Sydney Medical School, University of Sydney, Sydney, NSW, Australia
  4. Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia
  5. School of Nursing and Midwifery, Faculty of Health Sciences, Curtin University, Sydney, NSW, Australia
  6. Radiation Oncology, Chris O'Brien Lifehouse, Sydney, NSW, Australia

Background: Patients receiving radiotherapy require relevant and accurate information so they can be involved in decisions about their treatment and effectively manage their treatment-related side effects. There is a lack of research exploring how patients describe and make sense of the information received at different stages of their treatment journey, from initial treatment decisions through to follow-up care.
Aim: To explore how patients understand and interpret information as they proceed through radiotherapy.
Methods: Semi-structured interviews were conducted with 21 radiotherapy patients with a range of cancer types. Data were analysed using Framework approach to compare and contrast how patient experiences differ.
Results: Key themes included: (1) perceived role and responsibilities in the treatment decision-making process, (2) understanding of radiotherapy and what happens beyond treatment, (3) preparedness for side-effects and their management, (4) overall experience of care and support, and (5) strategies to improve communication and the patient experience. Most patients perceived the initial decision to undergo radiotherapy as a recommendation presented by the medical team not a choice, but were happy to follow their advice due to high levels of trust and confidence in their expertise. While most patients had a good understanding about the intent of radiotherapy and recall of the associated side-effects, some did not appear to be aware of their medical future following radiotherapy (e.g. recurrence risk, side effects, follow-up appointments). Participants suggested ways to enhance the patient experience, including: making information more accessible outside the hospital, incorporating patient mentoring, treatment centre tours, and consistent staff contact.
Conclusion: Information about radiotherapy is understood to varying degrees by patients receiving this treatment. Improvement in information accessibility, familiarity with the treatment centre, and continuity of staff involved in care may facilitate patient knowledge about treatment and its side-effects. Future research could focus on lower education and literacy populations.

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