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.

[Adolescents with cancer: the "Youth Project" at the Istituto Nazionale Tumori in Milan]. / Gli adolescenti ammalati di tumore: il "Progetto Giovani" dell'Istituto Nazionale dei Tumori di Milano.

Adolescents with cancer are a particular group of patients who are less likely to gain access to optimal cancer services at comprehensive cancer Centers: many studies suggest adolescents fare less well than children with the same disease. The paper describes the key issues of the "Youth Project" of the Pediatric Oncology Unit IRCCS Fondazione Istituto Nazionale Tumori in Milan, dedicated to adolescents (over 15 years old) and young adults (up to 25 years old) with solid tumors. This project is a possible clinical and organizational model to address the unique needs of patients in this age group and for bridge the gap in access to care and in recruitment in clinical trials, in clinical and psycho-social management and in curves of healing. The paper also describes the activity of the Adolescent Commission established by the Italian Pediatric Hematology Oncology (AIEOP).

The Youth Project at the Istituto Nazionale Tumori in Milan.

The paper describes the key issues of the Youth Project launched in 2011 at the pediatric oncology unit of the Istituto Nazionale Tumori in Milan dedicated to adolescents (over 15 years old) and young adults (up to 25 years old) with solid tumors. The Youth Project was developed within the pediatric oncology unit in the conviction that adolescent patients may benefit from the multidisciplinary team typical of the pediatric oncology setting, as well as the expertise in treating pediatric-type malignancies and enrolling patients in clinical trials. The project was an offshoot of existing activities, making no major changes to the hospital's organization and posing no major demands on the institution's administration and board. Patients are managed by the pediatric oncology staff, but they have access to particular services (e.g., regarding their psychosocial support, fertility preserving measures, access to care after completing therapy); dedicated, adequately equipped multifunctional rooms have been provided. The location of the pediatric unit within a cancer referral center and the cooperation with divisions dedicated to adults have played an important role in the project's creation.

Psychological assessment of women on an early breast screening program after radiotherapy to the chest wall for childhood cancer.

AIMS AND BACKGROUND: This study investigates the psychological status in a population of female patients who received chest irradiation for a childhood cancer and were screened for second primary breast cancer. METHODS: Sixty-eight consecutive such young women were included. Compilation of the Crown-Crisp Index questionnaire was requested and 49/68 patients accepted to fill it in; 14 women in the sample had children (28%). RESULTS: Twenty-seven of 49 patients achieved a normal score, whereas in 22 the score was slightly above the normal range in at least one scale. Pathological scores were more frequent among the women without children. CONCLUSION: Quality of life in this series of long-term survivors does not seem to be severely affected by previous treatment for cancer nor by the concern for the onset of a second primary malignancy.