Adolescents with cancer on privacy: Fact-finding survey on the need for confidentiality and space.

BACKGROUND: Cancer diagnosis and related treatment can limit young patients' privacy. Their need for private physical and psychological spaces can be impeded by limited freedom, e.g., sharing hospital rooms with others and exposing their body to their parents and doctors. METHODS: We conducted a survey among young patients of our center to investigate how their perception of privacy changed after being diagnosed with cancer and their need for hospital dedicated physical spaces and time for patients to enjoy their privacy. A questionnaire with 16 items was developed by the staff involving psychologists and physicians. The relevance of changes before and after the cancer diagnosis was assessed by calculating two scores indicating the situation before and after diagnosis for each answer, as well as a delta score. RESULTS: Between May and June 2020, the questionnaire was completed by 60 patients aged 16-24 years. The median delta scores describing the changes before and after diagnosis were -8 points for perception of privacy, indicating a significant decrement of the level of privacy perceived. A major issue was the constant presence of parents being perceived as intrusive. Concerning hospital dedicated physical spaces and time for patients to enjoy their privacy, respondents requested dedicated spaces (50% of patients) and opportunities to have private interviews with medical personnel (88%). CONCLUSIONS: Our study offers a snapshot of how young people with cancer perceive the impact of the disease and its treatment on their privacy with the restrictions imposed on their individual freedom. Patients' personal needs must be taken into consideration to adopt appropriate measures and better organize wards.

Models of Care-There Is More Than One Way to Deliver.

Adolescents and young adults (AYAs) with cancer constitute a particular group of patients with unique features, whose needs during and after treatment are poorly met. A standardized model of care for them has yet to be established, as neither the pediatric nor the adult oncology systems seamlessly fit their needs. Regardless of the setting in which they are treated, their health care providers should be aware of the impact that the disease and its treatments have on these especially vulnerable patients. Simple ways of improving the AYA experience should be considered: reducing isolation through connections with peers, adapting the staff's approach to the emotional and developmental needs of this age group, and modifying the hospital environment making it more age appropriate. Commitment of national governments is valuable; building and sharing international experience will accelerate advances in clinical care, education, and research. Further progress in the care of AYA cancer patients is still needed to improve their outcomes.