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A recent qualitative study on the experiences of allogeneic hematopoietic stem cell transplantation (allo-HSCT) recipients revealed the extent of cognitive impacts these survivors have faced. Findings from this study were reported in the journal Oncology Nursing Forum.
“Even after the risk of malignancy relapse has abated, individuals treated with allo-HSCT are at risk for physical, psychological, and functional impairments that may interfere with readjustment after treatment,” the study investigators explained in their report. They had a study aim of exploring the cognitive difficulties recipients of allo-HSCT may encounter during survivorship.
The study was a descriptive analysis of the experiences of 20 survivors who received follow-up care after allo-HSCT at Princess Margaret Cancer Centre in Toronto, Canada. Survivors in this study participated in semistructured interviews, with open-ended questions, as a component of an overall longitudinal study on cognitive outcomes following allo-HSCT. This analysis included interviews conducted at a 6-year follow-up.
The patients were median age 53 years (range, 24 to 76). The median interview length was 15 minutes (range, 6 to 44), and interviews occurred at a mean of 6.12 years (SD, 0.37) following allo-HSCT. A total of 8 participants met criteria for cancer-related cognitive impairment set by the International Cognition and Cancer Task Force, and each participant in the study reported some degree of cognitive difficulty after allo-HSCT.
Themes that appeared in participants’ interviews included changes to the experience of everyday tasks, a tendency to experience emotional responses, and adoption of mitigation strategies. Within each theme, multiple subthemes also were identified.
Regarding changes to the experience of everyday tasks, participants reported changes to routines, decision-making processes, and social interactions. Processes that involved routines had come to require more focus than before. For example, a participant characterized grocery shopping as a process that required attention to the steps needed even to leave the house. Participants described decision-making becoming harder in terms of managing various inputs, and social interactions becoming more difficult in terms of contributing to and following conversations.
Regarding emotional responses, participants expressed feelings of being frustrated and overwhelmed, in addition to feeling isolated and different from others. Frustration with completing a task, for example, could easily result in a sense of inadequacy. However, participants also expressed a degree of acceptance of their ongoing symptoms as well as an expectation that symptoms would improve with time.
Mitigation strategies that survivors adopted included developing a positive mindset and self-talk, accepting support from other people, and identifying strategies for coping with cognitive difficulties through trial and error. The study investigators noted that participants primarily sought out coping strategies on their own, rather than enlisting healthcare options. Some strategies involved developing routines, planning, and new hobbies or ways to challenge themselves.
“Long-term survivors of allo-HSCT experience a range of everyday impacts related to cognitive difficulties,” the study investigators concluded in their report. They also suggested the study’s findings may help in developing interventions for addressing cognitive difficulties and improving quality of life.
Reference
Mayo SJ, Wozniczka I, Edwards B, et al. A qualitative study of the everyday impacts of cognitive difficulties after stem cell transplantation. Oncol Nurs Forum. 2022;49(4):315-325. doi:10.1188/22.ONF.315-325
