Matteo Silva

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.

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 10 years, 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.

Viral!: The propagation of a Christmas Carol produced by adolescent cancer patients at the Istituto Nazionale Tumori in Milan, Italy

To the Editor: We wish to offer a brief account of the remarkable, unexpected success of a video, “Christmas Balls (Smile! It’s Christmas Day)”, a Christmas carol written and sung by adolescent cancer patients involved in the Youth Project at the Istituto Nazionale Tumori (INT) in Milan, Italy,1 with the professional help of Stefano Signoroni (an INT researcher and musician). The term “Christmas Balls” was created by the teenagers themselves, and refers to Christmas tree ornaments, snowballs, and the teens’ bald heads. In addition, the term is Italian slang for “what a bore,” a reference to spendingChristmas in the hospital, and is also slang for the “lies” that people often tell them. The video (available on Youtube at https://www.youtube. com/watch?v = hFNXCuPCbLA, and with English subtitles at https://youtu.be/dhroBWA5bH8) went viral, with more than 6,300,000 views, more than any current professional’s Christmas song in Italy. This attracted the attention of the media, which dedicated ample space to the story of the song and the Youth Project. This was the first time a project undertaken by patients had made such a mark in Italy. The Christmas carol is just one example of how the Youth Project2 uses music, art, and other creative activities3,4 to help patients share their hospital experience with their peers, make something beautiful happen in the hospital ward, and find new ways of expressing their feelings.5,6 The project also aims to give physicians the chance to raise awareness in the general population, spread the message that adolescents can develop cancer too, and that they need dedicated medical services. One of the goals of the Youth Project is to communicate and disseminate information, throughoutmessages that are easy to understand and appeals to young people. The reasons for the song’s success are not entirely clear, but probably include the contrast between cancer in adolescence andChristmas; the contrast between the smiling, joyful faces of the young patients, and the general population’s sense of horror at the idea of pediatric cancer must have captured people’s attention. An easy and joyful “form” was successful to spread a more complicated “content” (the anguish of cancer in adolescence). The unexpected success of the Christmas carol is even more special considering that no specific strategy was adopted to make it happen. There was a sort of self-propagation on the web, a spontaneous snowballing through the social networks (and Whatsapp chain messages in particular), and aphenomenonpromptedby awaveof emotion and certainly most unusual for information campaigns in the medical sphere, especially in pediatric oncology. What happened is a demonstration that social networks are an excellent mode of communication, even formedical topics, and it is therefore important for scientific communicators tomake good use of them. This story demonstrates the power ofmusic, the therapeutic power of bringing adolescents together, but especially the power of social networks.

Shout in fury but smile at life: A portrait of an adolescent with cancer on the Youth Project in Milan

“Before I became ill, I knew perfectly well that this disease existed. Mymistake—or perhaps it’s what normally happens to an adolescent— was that I thought I was invincible, untouchable. (...) I kept fixing on the question, ‘Why me?’,”1 wrote 17-year-old Sefora, being treated for a synovial sarcoma in her leg. Sefora participated in the photography project “TheSearch forHappiness,” oneof the supportive artistic activities developed within the Youth Project of the Istituto Nazionale dei Tumori in Milan (Italy),2 with the aim of giving to young patients a particular chance to tell their stories, to express their feelings, their hopes and fears, and innermost thoughts that theymayfinddifficult to convey in words to a specialist.3–8 Sefora decided to removeherwig to posewithout her hair andwithout shame. “My search for happiness,” she said, “lay entirely in demonstrating my refusal to succumb to the physical changes induced by the disease and the therapies. My happiness lies in regaining control overmy good looks, smiling despite everything, appreciating the lovely things in life.” Sefora devised a photograph (taken by one of the professional photographers who coordinated the project) to illustrate her

“What shall I do when I grow up?” Adolescents with cancer on the Youth Project in Milan play with their imagination and photography

Introduction: Adolescents diagnosed with cancer have to temporarily stop pursuing several vital needs and making plans for the future. The Youth Project in Milan, Italy, focuses on such issues in young cancer patients’ personal lives. Uncertainty about the future had already emerged in several artistic projects designed to help these patients voice their emotions. Methods: We describe a project revolving around the question “What shall I do when I grow up?” Twenty-seven 15- to 26-year-old patients wrote a brief account of what they hoped to do as adults. Using theatrical costumes, they then dressed up in their chosen role for a photo shoot with a well-known professional photographer. The results were published in one of Italy’s main national dailies. Results: Participants reacted differently: some lightheartedly, others more seriously. They often expressed the wish to help others, desiring to return the support and protection they had received as patients. Another common theme concerned their need for normality. Conclusions: By writing about their dreams, these patients gave their doctors a glimpse of their inner world. The project proved an important complement to more conventional forms of psychosocial support and interaction with young patients.