Chiara Magni

Clouds of Oxygen: Adolescents With Cancer Tell Their Story in Music

Andrea Ferrari, Michela Casanova, Stefano Chiaravalli, Chiara Magni, Roberto Luksch, Monica Terenziani, Filippo Spreafico, Daniela Polastri, Cristina Meazza, Serena Catania, Elisabetta Schiavello, Veronica Biassoni, Marta Podda, Luca Bergamaschi, Nadia Puma, Carla Moscheo, Giacomo Gotti, Maura Massimino, Fondazione IRCCS Istituto Nazionale Tumori; Laura Veneroni, Carlo Alfredo Clerici, University of Milan, Milan, Italy.

Creating Beauty: The Experience of a Fashion Collection Prepared by Adolescent Patients at a Pediatric Oncology Unit:

Aims and Background Adolescent patients with cancer need psychological support in order to face the traumatic event of cancer diagnosis and to preserve continuity with their normal lives. Creative projects or laboratories may help young patients express their thoughts and feelings. Methods The Youth Project developed activities dedicated to adolescents to give them a chance to vent their creative spirit and express themselves freely. In the first project, the teenagers designed their own fashion collection in all its various stages under the artistic direction of a well-known fashion designer, creating their own brand name (B.Live), and organized a fashion show. Results In all, 24 patients from 15 to 20 years old took part in the project. The fashion project proved a fundamental resource in helping the young patients involved to regain a positive self-image and the feeling that they could take action, both on themselves and in their relations with others. Conclusions Facilitating the experience of beauty may enable hope to withstand the anguish caused by disease. This experience integrated the usual forms of psychological support to offer patients a form of expression and support during the course of their treatment.

The Sooner the Better? How Symptom Interval Correlates With Outcome in Children and Adolescents With Solid Tumors: Regression Tree Analysis of the Findings of a Prospective Study

The potential impact of diagnostic delays on patients’ outcomes is a debated issue in pediatric oncology and discordant results have been published so far. We attempted to tackle this issue by analyzing a prospective series of 351 consecutive children and adolescents with solid malignancies using innovative statistical tools.

Measuring the efficacy of a project for adolescents and young adults with cancer: A study from the Milan Youth Project

Various projects dedicated specifically to adolescents and young adults (AYA) with cancer have been developed in recent years. A critical aspect of such programs is the ability to demonstrate its value, and therefore how to measure desired outcomes.

“Christmas Balls”: a Christmas carol by the adolescent cancer patients of the Milan Youth Project

The Youth Project is a program developed at the Pediatric Oncology Unit at the Istituto Nazionale Tumori in Milan, dedicated to adolescents and young adults with cancer. Among its various goals, the Youth Project organizes structured creative activities with the support of professionals, with the objective of offering young people a new way to express their hopes and fears. This article describes a project centered around music: patients created a Christmas carol with the help of musicians and authors. The adolescents explained with their own words the meaning of the lyrics, telling the story of a Christmas spent in a cancer hospital ward.

Adolescents' Health Awareness and Understanding of Cancer and Tumor Prevention: When and Why an Adolescent Decides to Consult a Physician.

A feature often seen in adolescent patients with cancer is a lengthy symptom interval, especially in comparison with children. It has been suggested that inadequate awareness of cancer risk among adolescents may play an important role in this study.

Model of Care for Adolescents and Young Adults with Cancer: The Youth Project in Milan.

Adolescents and young adults (AYA) with cancer form a particular group of patients with unique characteristics, who inhabit a so-called “no man’s land” between pediatric and adult services. In the last 10u2009years, the scientific oncology community has started to pay attention to these patients, implementing dedicated programs. A standardized model of care directed toward patients in this age range has yet to be developed and neither the pediatric nor the adult oncologic systems perfectly fit these patients’ needs. The Youth Project of the Istituto Nazionale Tumori in Milan, dedicated to AYA with pediatric-type solid tumors, can be seen as a model of care for AYA patients, with its heterogeneous multidisciplinary staff and close cooperation with adult medical oncologists and surgeons. Further progress in the care of AYA cancer patients is still needed to improve their outcomes.

Spiritual support for adolescent cancer patients: a survey of pediatric oncology centers in Italy and Spain.

Introduction Spirituality is a fundamental aspect of the psychological well-being of adolescents with cancer. This study reports on a survey conducted at pediatric oncology centers in Italy and Spain to examine the situation concerning the provision of spiritual support. Methods An ad hoc questionnaire was distributed including multiple-choice questions on whether or not spiritual support was available; the spiritual counselors role; how often the spiritual counselor visited the unit; and the type of training this person had received. Results A spiritual support service was available at 24 of the 26 responding centers in Italy and 34/36 in Spain. The training received by the spiritual counselor was exclusively theological in most cases (with medical or psychological training in a few cases). In both countries the spiritual counselor was mainly involved in providing religious services and support at the terminal stage of the disease or in talking with patients and families. Cooperation with caregivers was reported by 27.3% and 46.7% of the Italian and Spanish centers, respectively, while the daily presence of the chaplain on the ward was reported by 18.2% and 26.7%. Conclusions The role of the spiritual counselor in pediatric oncology – in Italy and Spain at least – is still neither well-established nor based on standardized operating methods or training requirements. A model that implies the constant presence of a spiritual counselor in hospital wards may be proposed to provide appropriate spiritual support to adolescents with cancer.

There's no reason why: a campaign to raise cancer awareness among adolescents.

Introduction Adolescents with cancer often experience a longer diagnostic delay than children, mainly because they take longer to go to a doctor. The Italian Society for Adolescents with Oncohematological Diseases (SIAMO) has launched an information campaign focusing on raising adolescents’ awareness of the importance of diagnosing cancer early. Methods The concepts of the campaign were developed by a scientific committee of clinicians, cancer patients and their parents, and marketing experts. The title of the campaign is “Theres no reason why”. A video has been launched on TV channels and the Internet, and the final frame refers viewers to the SIAMO website, which provides advice to help adolescents interpret any symptoms they experience. Results The video has had 12,181 views. In the 6 months following the launch of the campaign, the SIAMO website page dedicated to the campaign was opened by 9,767 viewers for a total of 13,632 views. Conclusions Though it remains very difficult to judge the efficacy of this initiative, the value of a campaign focusing on improving the adolescent populations cancer awareness is supported by the large number of studies published on the diagnostic delay in this age group. Our campaign goes to show the importance of ensuring cooperation between the different stakeholders involved in the global care of adolescents with cancer.

The challenge of very rare childhood cancers in developed and developing countries

ABSTRACT Introduction: The improvements made in the field of pediatric oncology in the last decades due to the propensity to develop national and international cooperative protocols have not been historically seen for a number of very rare pediatric neoplasms whose common denominator lies in their having been treated as orphan diseases. For several years now, this situation has fortunately been gradually changing, and various projects dedicated to these rare diseases have been developed in several countries. Areas covered: This paper describes the schemes dedicated to rare pediatric tumors in countries with different development levels, with a particular reference to the EXPeRT (European Cooperative Study Group for Pediatric Rare Tumors) project. Expert opinion: Experience gained in recent years on rare tumors in childhood underscores the importance of cooperation and networking. Further efforts are now needed to extend research and improve the quality of patients care. The pediatric study groups that have invested their resources in this area must now strive to obtain institutional recognition and to seek new partnerships with adult medical oncology centers, organizations concerned with biological-genetic studies, and partners such as pharmaceutical industries, regulatory authorities, and international funding commissions.