SIAMO – Società Italiana Adolescenti con Malattie Onco-ematologiche – means Italian Society for Adolescents with Onco-hematological Diseases.
It is a comprehensive national program dedicated to adolescents (and young adults) with cancer, launched in 2013 by the pediatric cooperative group Associazione Italiana Ematologia Oncologia Pediatrica (AIEOP) and the Italian Federation of Parent Associations for pediatric onco-hematology.
SIAMO is the evolution of the national Committee on Adolescents founded by AIEOP in 2010 with the mission of ensuring that Italian adolescents with cancer have prompt, adequate, and equitable access to the best care to optimize their treatment outcome and quality of life.
FIAGOP (Federazione Italiana Associazioni Genitori Oncoematologia Pediatrica), in cooperation with the adult cooperative groups AIOM (Associazione Italiana di Oncologia Medica) e SIE (Società Italiana di Ematologia).
SIAMO moves from a pediatric oncology-based committee on adolescents to a forward-thinking national broad-based task-force dedicated to adolescents and young adults, and wants to represent the official structure to achieve the support from national health service organizations and governments.
SIAMO involves not only physicians (from both the pediatric and the adult medical oncology world), but also various stakeholders such as nurses’ groups, psychologists, social workers, advocacy organizations, survivors’ groups.
SIAMO wants to definitely face up the strong necessity to bridge the gap in the quality of professional care for adolescents with cancer. This is the major challenge, and requires broad-based schemes able to involve the public and its awareness, the health care providers, the cooperative groups running clinical trials, the university, but also the national government.
SIAMO wants to cooperate with the other international specific groups, starting from the European Network for Teenagers and Young Adults with Cancer (ENTYAC).
What makes adolescents special?
Adolescents with cancer are a unique group, with special characteristics. Patients in this age group seem to inhabit a “no man’s land”, neither belonging to the pediatric nor to the adult worlds of oncology.Their optimal management (e.g. coping with their complex psychological and social needs, providing age-appropriate facilities, and their inclusion in clinical trials) remains a challenge that requires broad-based processes.
There is a long list of specific clinical and psychosocial features, but also challenges in patient’s management, that mark out being an adolescents with cancer:
- the peculiar epidemiology
- the biological and clinical differences of a given tumor when arising in adolescence as compared to children or older adults
- the insufficient awareness that cancer may occur in this age group, among teenagers and their families, but also among physicians, with the consequence of a diagnostic delay
- the impact of the cancer diagnosis and treatment in a period when they are undergoing marked psychological and physical changes, establishing their self-image, structuring their identity and relationships, and getting independent from their parents; dealing adequately with the peculiar psychosocial needs is an indispensable goal of care providers: coping with illness and treatment, relationships with friends and family, communication in relation to age and consent, spirituality, behavior and risk taking (smoking, alcohol, substance use, sexual health), the possibility of psychopathological disorders; compliance and treatment adherence
- the issue of fertility preservation
- the need for specific follow-up and transition programs for late sequelae and non-reintegration into social life
- the lack of improvement in survival rates as compared to other age groups: for many tumor types, survival rates of adolescents are poorer than that of children with the same disease, partially due to different in biology but partially due to also to delivered treatment
- adolescents sometimes have limited access to optimal cancer services and low accrual to clinical trials
- the need of an effective cooperation between pediatric and adult medical oncologists for the optimal clinical management of adolescent patients
- the need of a multi-professional team including specialised doctors (regardless of their pediatric or adult medical oncology background), psychologists, nurses, social workers, activity organisator, all with a specific training
- the need of an adequate environment for care (needs for privacy and dedicated spaces, reducing time in hospital, relationship with their peers)
- the critical role of parents associations, peer’s groups, charities and testimonials for developing dedicated projects and the required resources.
“Clouds of Oxigen”, the song created by the B.Livers, the teenagers of the Youth Project of the Istituto Nazionale Tumori of Milan, with the help of Faso and the famous rock band Elio e le Storie Tese.
“In their own words”, the teenagers of the Youth Project of the Istituto Nazionale Tumori of Milan tell their histories: the diagnostic pathway, the treatment period, the return to their life out of the hospital.
The AIEOP Committee on Adolescents
A formal Committee on Adolescents of the Associazione Italiana Ematologia Oncologia Pediatrica (AIEOP)(www.aieop.org) was officially established in 2010.
As a first step, the Committee investigated whether the limited access of adolescents to dedicated cancer centers and their under- into clinical trials, reported already by other groups, was true also in our country, comparing the number of patients treated at AIEOP-affiliated pediatric oncology centers to the number of cases expected to occur in Italy based on incidence rates obtained from population-based cancer registries. This study showed that the observed to expected ratio was only 0.10 for adolescents, as opposed to 0.77 for children. This ratio increased gradually from 0.05 to 0.18 over the years (three successive 6-year study periods, from 1989 to 2006, were considered for the analysis), and was higher for certain tumor types (e.g. sarcomas). Nevertheless, this report emphasized that the AIEOP network was far less effective in serving adolescents than children.
Therefore, the Committee launched a survey to investigate whether one reason why adolescents were not accessing AIEOP units was the existence of rigid upper age limits for admission to pediatric cancer units and pediatric hospitals. This study found that many Italian pediatric oncology centers currently use upper limits of 16, 15, or even 14 years (46%), while others place a rigid limit of 18 years of age (39%), and reject patients over the upper age limits even if they suffer from tumors typical of childhood, such as rhabdomyosarcoma or acute lymphoblastic leukemia.
With these findings in mind, the AIEOP Committee on Adolescents defined a strategy with the mission to ensure that Italian adolescents with cancer have a prompt, adequate and equitable access to the best care. Increasing the number of adolescents referred to pediatric oncology units was declared as the first objective, but I was defined that pediatric centers must demonstrate a commitment, i.e. have the adequate infrastructure concerning clinical trials access, age-appropriate psychosocial teams, supportive care projects, fertility programs, planned transitions in care and so on. Further aims were: a) improving awareness, b) cooperation with adult medical oncologists: c) addressing specific issues linking with other AIEOP working groups to define adolescent-specific aims in their protocols.
To foster the implementation of these activities, the current strategy has evolved from a pediatric oncology-based Committee to a a comprehensive national broad-based task-force dedicated to adolescents and also to young adults, involving various stakeholders.
This newborn society (SIAMO – Società Italiana Adolescenti con Malattie Onco-ematologiche) should be the official structure to achieve the support from national health service organizations and governments.
Two local projects specifically tailored to adolescents and young adults with cancer have been developed in Italy up to the 2013.
In Italy, the Youth Area Project of the Centro di Riferimento Oncologico (CRO) in Aviano was a pioneering experience. Started in January 2007 and dedicated to 14- to 24-year-olds, this project was devised with a trans-departmental dimension, not as the “property” of a single department, in which different specialists retain their own roles and specialties.
The Youth Project of the Pediatric Oncology unit at the Istituto Nazionale Tumori (INT) in Milan was launched in 2011, a dedicated program within the pediatric oncology unit (where no any upper age limit for admitting patients with pediatric cancers to the pediatric unit was present) focusing on clinical aspects (e.g. inclusion in clinical trials, psycho-social support, fertility preserving facilities), but also with the view of creating dedicated multifunctional spaces and special events
Noteworthy, the two schemes have many similarities, but arose in a completely different local setting (one from the pediatric oncology and the other from the medical oncology side); the effort to establish a fruitful cooperation between pediatric and adult medical oncologists is a common denominator of the two projects, regardless of their origins, and a key element for achieving a successful program.
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[Fotografie di Laura Larmo]