End-of-life care in pediatric neuro-oncology.

BACKGROUND: The management of children with cancer during the end-of-life (EOL) period is often difficult and requires skilled medical professionals. Patients with tumors of the central nervous system (CNS) with relapse or disease progression might have additional needs because of the presence of unique issues, such as neurological impairment and altered consciousness. Very few reports specifically concerning the EOL period in pediatric neuro-oncology are available. PROCEDURE: Among all patients followed at our center during the EOL, we retrospectively analyzed data from 39 children and adolescents with brain tumors, in order to point out on their peculiar needs. RESULTS: Patients were followed-up for a median time of 20.1 months. Eighty-two percent were receiving only palliative therapy before death. Almost half the patients (44%) died at home, while 56% died in a hospital. Palliative sedation with midazolam was performed in 58% of cases; morphine was administered in 51.6% of cases. No patient had uncontrolled pain. CONCLUSIONS: The EOL in children with advanced CNS cancer is a period of active medical care. Patients may develop complex neurological symptoms and often require long hospitalization. We organized a network-based collaboration among the reference pediatric oncology center, other pediatric hospitals and domiciliary care personnel, with the aim to ameliorate the quality of care during the EOL period. In our cohort, palliative sedation was widely used while no patients died with uncontrolled pain. A precise process of data collection and a better sharing of knowledge are necessary in order to improve the management of such patients.

The Creation of a Transition Protocol Survey for Childhood, Adolescent, and Young Adult Cancer Survivors in Transition from Pediatric to Adult Health Care in Italy.

Purpose: The purpose of the study was to create in Italian a transition protocol survey to monitor the readiness of childhood, adolescent, and young adult (CAYA) cancer survivors who are undergoing transition from pediatric to adult health care. A protocol could support clinical practice through the proposal of individualized transition care pathways for CAYA survivors and inform future scientific studies that focus on barriers to successful transition. Methods: Three international questionnaires that investigate the biopsychosocial issues and needs of survivors were subjected to the Forward and Backward Translation process. Following this, CAYA survivors were recruited from September 2019 to August 2020 in the pediatric oncology centers of the Interregional Pediatric Oncology Network of Piedmont and the Aosta in Italy to participate in cognitive interviews as part of the validation and cultural adaptation process of the questionnaires, which will form the transition protocol survey. Results: Revisions and cognitive interviews with 40 CAYA survivors identified any inadequate expressions and resolved any concepts of misunderstanding or cultural unsuitability for the Italian translation. Overall, they found the scales to be easily understandable, and an Italian version of the scales was produced to create the final transition protocol survey. Conclusion: The transition protocol survey might be used as a valid tool to highlight critical issues to support sustainable transition processes between Italian oncology centers. The protocol can be implemented into clinical practice thus offering CAYA the possibility of resolving some needs, receiving personalized support, and surveillance before the transition.

The biopsychosocial condition of childhood cancer survivors in the transition towards adult care: a national survey from the joint pediatric and adult transition care group.

BACKGROUND: To provide successful transfer from childhood to adult-oriented healthcare is one of the priorities of survivorship care plans. PURPOSE: This study describes adolescent and young adult childhood cancer survivors' conditions at the moment of the transition to adult care deepening their biological, psychological, social and assistant state and their associations with socio-demographic and clinical characteristics. METHODS: A biopsychosocial check-list in four health domains (biological, psychological, social and assistant) was filled in by healthcare professionals (oncologists, psychologists, social workers and nurses) through qualitative interviews and clinical observations of 79 survivors (58% boys; Mage = 20 years old) at the moment of the transition from the Pediatric Oncology Unit to the Transition Unit of the Childhood Cancer Survivors. RESULTS: At the moment of transition, 38% of survivors showed a positive condition in all the four health domains without any kind of impairment. Biological (37%) and psychological areas (44%) were found to be those with major incidence of impairments. Association phenomena were found between psychological and social condition (p < 0.05) and between social and assistant condition (p < 0.05). Biological condition was also significantly associated with the type of cancer (χ = 6,2414, p < 0.05). CONCLUSION: Although many survivors entered in adult care system without any impairment, the biopsychosocial approach highlighted that there is a presence of impairments in at least one of the main health domains.

Body Image Discomfort of Adolescent and Young Adult Hematologic Cancer Survivors.

This study focuses on body image discomfort (BID) of 50 adolescent and young adult (AYA) hematologic cancer survivors (age range 15-23; 52% males). The study results were obtained through data from a self-report questionnaire: the Body Uneasiness Test. Findings differed according to gender: a greater proportion of females were in the Risk category of impaired body image than males (χ2 = 5.258, p < 0.05). No significant body image differences were found according to the type of diagnosis or to the length of survival. To manage survivors' BIDs and to improve their quality of life, assessing BID in AYA cancer survivors is important for identifying those who might be in need of additional supportive care or a program.

Neuroleptic-induced dystonia: incidence and risk factors.

Retrospective evaluation of patients admitted consecutively to the psychiatric units of two general hospitals in Florence, to evaluate the rate and risk factors of neuroleptic-induced dystonia (NDA). One hundred and fifty-nine patients out of 2354 reviewed charts were included. The incidence of NDA was 15.7%. Multivariate analyses revealed that both age and neuroleptization speed (NS)-a new variable-were related to the occurrence of dystonia.