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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.

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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.

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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.

 

Local projects

Two local projects specifically tailored to adolescents and young adults with cancer have been developed in Italy up to the 2013.

 

www.areagiovanicro.it

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.

 

www.ilprogettogiovani.it

www.infoadolescentietumori.it

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.

 

Bibliography

  • Abrams AN, Hazen EP, Penson RT: Psychosocial issues in adolescents with cancer. Cancer Treat Rev 2007; 33:622-630.
  • Albritton K, Bleyer WA. The management of cancer in the older adolescents. Eur J Cancer. 2003;39(18):2584-2599.
  • Albritton, KH, Wiggins CH, Nelson HE, Weeks JC. Site of oncologic specialty care for older adolescents in Utah. J Clin Oncol 25 (29):4616-21,2007
  • Baldus, CD, Burmeister T, Martus P, et al. High expression of the ETS transcription factor ERG predicts adverse outcome in acute T-lymphoblastic leukemia in adults. J Clin Oncol 24, 4714–4720, 2006.
  • Barr R, Eden T. International Working Group on Adolescent/Teenage and Young Adult Oncology. Pediatr Blood Cancer 2008;50:1089.
  • Barr RD, Holowaty EJ, Birch JM. Classification schemes for tumors diagnosed in adolescents and young adults. Cancer. 2006;106(7):1425-30.
  • Bisogno G, Compostella A, Ferrari A, et al. Rhabdomyosarcoma in adolescents: a report from the AIEOP Soft Tissue Sarcoma Committee. Cancer 2012;118:821-827
  • Bleyer A, Barr R, Hayes-Lattin B, et al. Oncology, Biology and Clinical Trials Subgroups of the US National Cancer Institute Progress Review Group in Adolescent and Young Adult Oncology. The distinctive biology of cancer in adolescents and young adults. Nat Rev Cancer 8 (4), 288-298,2008
  • Bleyer A, Barr R. Highlights and challenges. In: Bleyer A, O’Leary M, Barr R, Ries LAG (eds): Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975-2000. National Cancer Institute, NIH Pub. No. 06-5767. Bethesda, MD 2006.
  • Bleyer A, Budd T, Montello M. Adolescents and young adults with cancer: the scope of the problem and criticality of clinical trials. Cancer. 2006;107(7 Suppl):1645-55.
  • Bleyer A, Montello M, Budd T, Saxman S. National survival trends of young adults with sarcoma: lack of progress is associated with lack of clinical trial participation. Cancer 2005;103:1891–1897.
  • Bleyer A, Tejeda H, Murphy SB, et al: National cancer clinical trials: children have equal access; adolescents do not. J Adolesc Health 1997; 21:366-373.
  • Bleyer A.The Quid Pro Quo of pediatric versus adult services for older adolescent cancer patients. Pediatr Blood Cancer 2010; 54:238-241.
  • Boissel N, Auclerc MF, Lheritier V, et al. Should adolescents with acute lymphoblastic leukemia be treated as old children or young adults? Comparison of the French FRALLE-93 and LALA-94 trials. J Clin Oncol 2003; 21:774-780.
  • Butow P, Palmer S, Pai A, Goodenough B, Luckett T, King M (2010) Review of adherence-related issues in adolescents and young adults with cancer. J Clin Oncol 28(32): 4800-9
  • Clerici CA Veneroni L, Bisogno G, Trapuzzano A, Ferrari A. Videos on rhabdomyosarcoma on YouTube: an example of the availability of information on pediatric tumors on the web. J Pediatr Hematol Oncol, in press
  • Clerici CA, Ferrari A, Massimino M, et al. Five questions for assessing psychological problems in pediatric patients cured of neoplastic disease. Pediatric Hematol Oncol 2004; 21:481–487.
  • Clerici CA, Massimino M, Casanova M, et al. Psychological referral and consultation for adolescents and young adults with cancer treated at a pediatric oncology unit. Pediatr Blood Cancer 2008; 51:105-109.
  • de Bont JM, van der Holt B, Dekker AW, et al. Significant difference in outcome for adolescents with acute lymphoblastic leukemia treated on pediatric versus adult ALL protocols in the Netherlands. Leukemia 2004;18:2032–2053.
  • Desandes E, Bonnay S, Berger C, et al. Pathways of care for adolescent patients with cancer in France from 2006 to 2007. Pediatr Blood Cancer. 2012 Jun;58(6):924-9
  • Eden T. Keynote comment: challenges of teenage and young-adult oncology. Lancet Oncol. 2006;7(8):612-613.
  • Fern L, Davies S, Eden T et al. Rates of inclusion of teenagers and young adults in England into National Cancer Research Network clinical trials: report from the National Cancer Research Institute (NCRI) Teenage and Young Adult Clinical Studies Development Group. Br J Cancer. 2008;99(12):1967-74
  • Fern LA, Whelan JS. Recruitment of adolescents and young adults to cancer clinical trials–international comparisons, barriers, and implications. Semin Oncol. 2010 Apr;37(2):e1-8
  • Fernandez C, Fraser GAM, Freeman C, et al. Principles and recommendations for the provision of healthcare in Canada to adolescent and young adult–aged cancer patients and survivors. J Adolesc Young Adult Oncol 2011; 1: 53-59.
  • Ferrari A, Aricò M, Dini G, et al. Upper age limits for accessing pediatriconcology centers in Italy: a barrier preventing adolescents with cancer from entering national cooperative AIEOP trials. Pediatr Hematol Oncol. 2012;29(1):55-61.
  • Ferrari A, Bisogno G, Meazza C, et al. The challenge of access to care for soft tissue sarcomas bridging pediatric and adult age: the Italian pediatric oncology view. Expert Rev Anticancer Ther. 2012;12:243-254.
  • Ferrari A, Bleyer A. Participation of adolescents with cancer in clinical trials. Cancer Treatement Review 33(7):603-608, 2007.
  • Ferrari A, Clerici CA, Casanova M, et al. The Youth Project at the Istituto Nazionale Tumori in Milan. Tumori, in press.
  • Ferrari A, Dama E, Pession A, et al. Adolescents with cancer in Italy: entry into the national cooperative pediatric oncology group AIEOP trials. Eur J Cancer. 2009;45(3):328-34.
  • Ferrari A, Dileo P, Casanova M, et al. Rhabdomyosarcoma in adults. A retrospective analysis of 171 patients treated at a single institution. Cancer 2003; 98:571-580.
  • Ferrari A, Meazza C, Vajna de Pava M, et al. Two cases of adolescents with paratesticular rhabdomyosarcoma inadequately treated: the problem of referral. J Adolesc Young Adult Oncol 2011;1:152-154.
  • Ferrari A, Miceli R, Casanova M, et al. Symptom interval in children and adolescents with soft tissue sarcomas. Cancer 2010;116: 177-183
  • Ferrari A, Montello M, Budd T, Bleyer A. The challenges of clinical trials for adolescents and young adults with cancer. Pediatr Blood Cancer2008; 50:1101-1104.
  • Ferrari A, Thomas DM, Franklin A, et al. Starting an AYA program: some success stories and some obstacles to overcome. J Clin Oncol 2010; 28:4850-4857.
  • Ferrari A. Adolescents with cancer in Italy: from local projects to a national coordinated program. Tumori  99(4):186e-7e, 2013
  • Ferrari A. Harmonizing adult and pediatric approaches to the treatment of soft tissue sarcoma. Expert Rev Anticancer Ther 2009; 9:1541-1543.
  • Ferrari A. The challenge of access to care for adolescents with cancer in Italy: national and local pediatric oncology programs. International Perspectives on AYAO, Part 2. Journal of Adolescent and Young Adult Oncology, 2(3):112-117, 2013
  • Freyer DR, Brugieres L: Adolescent and young adult oncology: transition of care. Pediatr Blood Cancer, 50 (5 Suppl):1116-1119, 2008.
  • Gatta G, Zigon G, Capocaccia R, et al. Survival of European children and young adults with cancer diagnosed 1995-2002. Eur J Cancer  2009;45:992-1005
  • Gramatges MM, Rabin KR. The adolescent and young adult with cancer: state of the art– acute leukemias. Curr Oncol Rep. 2013;15(4):317-24.
  • Hinds PS, Oakes L, Furman W, et al. End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines. Cancer Nurs. 2001;24(2):122-34
  • Hollis R, Morgan S. The adolescent with cancer–at the edge of no-man’s land. Lancet Oncol. 2001;2(1):43-8
  • Klein-Geltink J, Shaw AK, Morrison HI, et al. Use of paediatric versus adult oncology treatment centres by adolescents 15-19 years old: the Canadian Childhood Cancer Surveillance and Control Program. Eur J Cancer 2005; 41:404-410.
  • Kondryn HJ, Edmondson CL, Hill J, Eden TO. Treatment non-adherence in teenage and young adult patients with cancer. Lancet Oncol. 2011;12(1):100-8
  • Lassaletta A, Andión M, Garrido-Colino C,et al. The current situation of adolescents with cancer in pediatric hematology-oncology units in Spain. Results of a national survey. An Pediatr (Barc). 2013 Apr;78(4):268.e1-7.
  • Levine J, Canada A, Stern CJ: Fertility preservation in adolescents and young adults with cancer. J Clin Oncol, 28:4831-4841, 2010
  • Lewis I, Morgan S. Models of care and specialized units. In Bleyer A, Barr R, Albritton K, Phillips M, Siegel S (Eds):  Cancer in Older Adolescents and Young Adults, Springer Verlag, Heidelburg, 2007.
  • Lewis IJ, Fallon S, van Dongen-Melman J, Barr R. Cancer and the adolescent: the Second Teenage Cancer Trust International Conference, Royal College of Physicians, London, England, March 2001. Med Pediatr Oncol 2002; 39:198-201.
  • Lewis IJ. Cancer in adolescence. British Medical Buffttin 1996;52:887-897
  • Marris S, Morgan S, Stark D. ‘Listening to Patients’: what is the value of age-appropriate care to teenagers and young adults with cancer? Eur J Cancer Care. 2011;20(2):145-51.
  • Mathews-Bradshaw B, Johnson R, Kaplan S, et al. The history and accomplishments of the LIVESTRONG Youg Adult Alliance. J Adolesc Young Adult Oncol 2011; 1:43-47.
  • Morgan S, Davies S, Palmer S, Plaster M: Sex, drugs, and rock ‘n’ roll: caring for adolescents and young adults with cancer. J Clin Oncol, 28: 4825-4830, 2010.
  • Olsen PR & Harder I. Keeping their world together – Meanings and actions created through network-focused nursing in teenager and young adult cancer care. Cancer Nursing, 2009, 32(6): 493-502.
  • Ramphal R, D’Agostino N, Klassen A, et al. Practices and resources devoted to the care of adolescents and young adults with cancer in Canada: A survey of pediatric and adult cancer treatment centers. J Adolesc Young Adult Oncol 2011; 1: 140-144.
  • Smith S. Adolescent units-an evidence-based approach to quality nursing in adolescent care. Eur J Oncol Nurs. 2004;8(1):20-9.
  • Thomas DM, Albritton KH, Ferrari A. Adolescent and young adult oncology: An emerging field. J Clin Oncol 2010; 28: 4781-4782
  • Thomas DM. Adolescents and young adults with cancer: The challenge. Palliat Support Care 2007; 5:173-174.
  • Veal GJ, Hartford CM, Stewart CF. Clinical pharmacology in the adolescent oncology patient. J Clin Oncol. 2010;28(32):4790-9
  • Veneroni L, Mariani L, Vullo SL, et al. Symptom interval in pediatric patients with solid tumors: adolescents are at greater risk of late diagnosis. Pediatr Blood Cancer 2013;60(4):605-10.
  • Whiteson M. The Teenage Cancer Trust–advocating a model for teenage cancer services. Eur J Cancer. 2003;39(18):2688-93.

 

[Fotografie di Laura Larmo]