The challenges of making informed decisions about treatment and trial participation following a cancer diagnosis: a qualitative study involving adolescents and young adults with cancer and their caregivers

Abstract

Background: Limited attention has been paid to adolescents and young adults' (AYA's) experiences in the aftermath of a cancer diagnosis, despite this being a time when potentially life-changing decisions are made. We explored AYA's and caregivers' experiences of, and views about, making treatment and trial participation decisions following a cancer diagnosis, in order to understand, and help facilitate, informed treatment decision-making in this age group. Methods: Interviews were undertaken with 18 AYA diagnosed, or re-diagnosed, with cancer when aged 16-24 years, and 15 parents/caregivers. Analysis focused on the identification and description of explanatory themes. Results: Most AYA described being extremely unwell by the time of diagnosis and, consequently, experiencing difficulties processing the news. Distress and acceleration in clinical activity following diagnosis could further impede the absorption of treatment-relevant information. After referral to a specialist cancer unit, many AYA described quickly transitioning to a calm and pragmatic mind-set, and wanting to commence treatment at the earliest opportunity. Most reported seeing information about short-term side-effects of treatment as having limited relevance to their recovery-focused outlook at that time. AYA seldom indicated wanting to make choices about front-line treatment, with most preferring to defer decisions to health professionals. Even when charged with decisions about trial participation, AYA reported welcoming a strong health professional steer. Parents/caregivers attempted to compensate for AYA's limited engagement with treatment-relevant information. However, in seeking to ensure AYA received the best treatment, these individuals had conflicting priorities and information needs.

Adolescents and young adults’ (AYA) views on their cancer knowledge prior to diagnosis: Findings from a qualitative study involving AYA receiving cancer care

“…AYA’s reflections on their experiences of diagnosis and initial/front‐line treatment point to the importance of education at and beyond diagnosis, but also to the challenges of delivering this. We have discussed elsewhere how AYA’s physical and emotional states can create difficulties processing and absorbing information when first diagnosed 14 . Whilst there are clearly significant obstacles to enhancing knowledge at this time, there may be more scope to achieve this over subsequent weeks and/or months, once AYA have processed their diagnosis and acquired some experiential understanding of treatment.…”

“…The AYA population too might benefit from clinicians establishing a practice of routinely assessing individual patients’ prior—and evolving—knowledge and informational needs. Consideration might also be given to the role that parents/caregivers can play in building AYA’s cancer knowledge, although it is important to note that parents/caregivers’ priorities and information needs may not always align with those of AYA 14 …”

“…Interviews followed a topic guide, informed by literature reviews, and inputs from clinical co‐investigators and AYA advisors. A copy of the full topic guide is appended to our previous publication 14 . Topics/questions of most relevance to this analysis were as follows: Before your own diagnosis, what did you know about cancer and its treatment?…”

“…We recently completed a study which explored AYA’s experiences of decision‐making about front‐line cancer treatment and their perspectives on participation in (Phase 3) clinical trials. That study highlighted significant challenges to informed decision‐making about both treatment and trials, including difficulties engaging with (disease and treatment‐related) information in the immediate aftermath of diagnosis 14 . The early stages of our analysis revealed an additional, important theme: knowledge of cancer and its treatment prior to diagnosis.…”

“…That study highlighted significant challenges to informed decision-making about both treatment and trials, including difficulties engaging with (disease and treatment-related) information in the immediate aftermath of diagnosis. 14 The early stages of our analysis revealed an additional, important theme: knowledge of cancer and its treatment prior to diagnosis. Identification of this theme prompted further, more detailed analytical work, which we report in this paper.…”