“Is My Brain Ever Going to Work Fully Again?”: Challenges and Needs of Cancer Survivors with Persistent Cancer-Related Cognitive Impairment

SIMPLE SUMMARY: Many people who have completed cancer treatment experience a ‘fog’ that affects their ability to remember, concentrate, process information, and make decisions. This is known as cancer-related cognitive impairment. There are no purpose-built tools currently available that health professionals can use to understand the needs of cancer survivors who experience cancer related cognitive impairment. To inform the development of such tools, we conducted interviews with (a) cancer survivors with cancer-related cognitive impairment and (b) oncology health professionals to understand the challenges and associated needs of people with cancer-related cognitive impairment. We found five themes describe cancer survivors’ challenges and needs relating to cancer-related cognitive impairment: (1) executing regular activities, (2) relational difficulties, (3) occupational functioning, (4) psychological distress, and (5) social functioning, as well as an additional informational needs domain. This research can be used to inform the development of a purpose-built needs assessment for cancer-related cognitive impairment. ABSTRACT: Many cancer survivors experience cognitive impairments that impact memory, concentration, speed of information processing, and decision making. These impairments, collectively known as cancer-related cognitive impairments (CRCIs), are a key domain of unmet needs and can significantly impact a cancer survivor’s identity and quality of life. However, there are no purpose-built, multi-domain, needs assessment tools specifically for CRCI. The development of such tools requires an in-depth understanding of cancer survivors’ CRCI-specific challenges and associated needs. This study explored the challenges and associated needs of cancer survivors with persistent CRCI. An in-depth qualitative design using semi-structured interviews with (a) cancer survivors with perceived CRCI (n = 32) and (b) oncology health professionals (n = 19) was utilised. A reflexive thematic analysis of the interviews resulted in five overarching themes: (1) executing regular activities, (2) relational difficulties, (3) occupational functioning, (4) psychological distress, and (5) social functioning, as well as an additional informational needs domain. Ultimately, CRCI was found to directly produce a range of challenges that negatively, and persistently, impact cancer survivors’ quality of life. Cancer survivors were also found to have a range of needs associated with these challenges. This research should be used to inform future challenges and needs assessment tools as well as treatment and supportive care priority areas directly relating to CRCI.