Spanish adolescent patients with cancer and main caregivers: Using perceptions of care to drive change in healthcare

Abstract

Purpose: To determine whether there are differences in care experience of adolescent cancer patients and their main caregiver, treated in Adolescent Cancer Units (ACUs), compared to those treated in Non-Adolescent Cancer Units (NACUs), including the COVID-19 pandemic period.

Method: Measurement of Reported Experience in adolescent oncology patients (12-19 years old) and caregivers through ad hoc surveys. The responses of the study group of patients and caregivers treated in Adolescent Units were compared with the group not treated in them.

Results: It is noted that many respondents consider that they have not been affected by the COVID-19 pandemic. Significant differences were seen in communication, with better perception by the group of patients treated in ACU (87.1%) and caregivers of ACU (97.3%) compared to patients and caregivers of NACU (53.3% and 68.2% respectively). Regarding information received about the side effects, a better perception was observed among patients treated in the ACU than in the NACU (p=0.247). In the transmission of information and the possibility of fertility preservation, a significant difference was observed in favour of ACU in patients and direct caregivers (p=0.010 and p=0.018).

Conclusions: ACU represents an improvement in the quality perceived by patients and main caregiver on key points in the comprehensive care of the adolescent with cancer such as information, participation in the process and decision making, approach to side effects, psychological care and help in returning to normal life. However, fertility and strategies for talking about the cancer experience, were identified as areas for future improvement.

Keywords: AYA; Adolescent; Adolescentes; Cancer care; Caregiver; Cuidador; Cuidados en cáncer; Encuesta; Survey.