COMBINING SCIENTIFIC RESEARCH AND CLINICAL EXPERIENCE: A NEW APPROACH TO PSYCHOLOGICAL SUPPORT OF ADOLESCENTS WITH CANCER

STRUCTURED ABSTRACT Background The treatment of cancer in adolescents and young adults is still challenging nowadays, presenting, in addition to the biological complexity of the disease and its treatment, special psychosocial needs of this subset of patients. This type of patient lies in a “no man's land”, between pediatric and adult oncology, too often without an adequate care. Moreover, suffering for cancer during adolescence, could hinder or delay the normal construction of a personal identity; therefore, these patients require more specific tools aimed at their protection and support. Due to the specific Italian historical background and scientific culture, to the complexity of psychosocial needs and to the multidisciplinary approach accomplished, the development of medical and psychological cancer treatment in children, adolescents and young adults represents a productive context for experimenting new approaches to psychological care, with each path of care tailored on the specific needs of a particular patient. This dissertation collects the studies conducted at the Pediatric Oncology Unit of Istituto Nazionale Tumori di Milano (INT), where a model for the best care of adolescent is being defined. These studies concern the critical aspects of the Adolescent and Young Adult Oncology, i.e. medical and psychological aspects, the primary role of communication, the use of new media, and the definition of an appropriate intervention strategy. Aim of the project The aim of this work is to describe the major concerns of cancer treatment in adolescents, reporting my scientific research and clinical experience at the Pediatric Oncology Unit of Istituto Nazionale dei Tumori of Milan, in which a multidisciplinary team is seeking a new psychological approach. Results In the present dissertation I present the results of the work carried out in the last three years. These results can be divided in four major categories, which are described in the different chapters. For each chapter, a brief summary is followed by a complete version of the single studies, most of which have been already published, or are in press or submitted to international scientific journals. Chapter 1: Medical problems. In recent years, pediatric oncologists reported that the survival trend for adolescents with cancer is disappointingly lower when compared with the improvements seen in children in the last few decades. I report two studies in which this is particularly evident. - Study 1.1. The situation in Italy is described, along with the current efforts made in order to bridge the gap in the curve of survival rates and implement specific programs for patients suffering of synovial sarcoma and rhabdomyosarcoma, two high-grade soft tissue sarcoma subtypes that occur in adolescents and young adults. - Study 1.2. It appears that adolescents often arrive to qualified cancer institutions with a considerable delay, and this is likely to affect their chances of being healed. We conducted a prospective investigation on patients with different types of solid tumors with the aim of establishing whether the diagnostic delay observed for soft tissue sarcomas, is confirmed in case of other malignancies. The data we collected suggest that this is the case. Chapter 2: Psychological aspects. Dealing with patients’ psychosocial needs has become an increasingly fundamental goal of care institutions. This is true, in particular, for adolescent patients. They develop the disease when are experiencing major psychological and physical changes, establishing their self-image, structuring their identity, their personality and their relationships with their peers. This makes especially important the presence of an adequate psychological care, that takes into account the relationship they are establishing with their social world. Medical care system must take responsibility for the person as a whole, and has to combine traditional therapy with new methods specifically designed for each individual patient. - Study 2.1 This study reviews the international literature from 1980 to present, with considerations on the perspectives for integrating the clinical, psychological, and psychopharmacological interventions. I discuss the specific issues relating to the psychopathological diagnosis in the course of organic disease, and behavioral aspects determined by the biological mechanisms directly related to the disease and their treatment. - Study 2.2. The organic components of psychic and behavioral alterations occurring during the disease are illustrated, considering the symptoms, the causes, and the possible remedies in the light of the most recent interdisciplinary viewpoints. The main mechanisms connected with the oncologic treatments - chemotherapy, surgery, radiotherapy - and responsible for psycho-organic alterations in children and adolescent with cancer are described. Within the Pediatric Oncology centres, the psychological intervention and the psychotherapy are generally offered to children and adolescents in order to support their adjustment to disease and treatment. The clinical practice, however, points out that the cognitive and emotional symptoms are sustained by biological mechanisms connected with disease and treatment, and that do not respond to psychological consultation and to other psychosocial resources. These manifestations could interfere with the treatment or with the long-term adjustment, and sometimes it is necessary to use also pharmacological supports to face them, but precise guidelines are needed . - Study 2.3. The use of the mirror therapy to treat phantom limb syndrome in a 39-year-old patient, whose right lower limb had been amputated at the age of 17 for an osteosarcoma is described. The patient suffered from frequent episodes of pain, with severe negative consequences on the quality of his life. In particular, the advantages of using an unconventional rehabilitation technique, and the recently developed mirror therapy are discussed. - Study 2.4. Cancer patients may have particular and clinically unconventional needs that are often unnoticed. It is a characteristic of adolescents to wonder about the meaning of life: who am I? Where am I going? What is the meaning of life? Disease and suffering unavoidably interfere with such processes (which are already critical per se). With the idea that spirituality is a relevant aspect for adolescents suffering from cancer, a ‘spiritual assistant’ should be included in the multidisciplinary team, whose aim is to adequately deal with patients’ needs, in order for them to have faith, trust and hope. This study explains what exactly the role of the spiritual assistant is within our group/department. - Study 2.5. Oncological diseases may demand long treatments, and the emotional attachment between care providers and patients might become intense. This especially happens when the patient is a child or an adolescent. This work reports the procedure devised and adopted for the immediate support of grief in use at the Istituto Nazionale Tumori in Milan when a patient dies. Clinicians should possess the necessary tools in order to cope with these emotional issues, as integral part of their responsibilities. - Study 2.6. Even when the therapy is capable of treating the disease, after the completion of the treatment, returning to normal life can be dramatically difficult. In this study I describe the case of a 17-year-old girl cured of Burkitt lymphoma, that committed suicide after completing her treatment. The complex needs of adolescent patients require a multidisciplinary team comprising different specialists, all involved in providing a more global treatment. It is essential for all the personnel to be alert in order to perceive any sign of psychic and social discomfort; this should be a constitutive part of the long-term follow-up program for childhood cancer survivors. - Study 2.7. This letter to Editor comments the editorial by Masera et al. that discusses the extraordinary adaptation processes implemented by young individuals who experience neoplastic disease. In the letter we clarify the idea that resilience may be the result of patient’s adaptation. On one side, cancer in developmental age can have severe permanent consequences, that can interfere with the adaptation process; on the other side, we believe that it is important to note that psycho-pathological criteria are not enough to assess patient’s quality of life. Chapter 3: Translating Scientific knowledge into an improved doctor-to-patient communication. Video sharing websites have become increasingly important in recent years in providing information and orienting people’s decisions relevant for their health. New technologies are nowadays an innovative form of worldwide communication. Unlike traditional videos, these resources stimulate the interaction among users; therefore they have become a sort of hybrid between public and personal tools. Especially adolescents use Internet to obtain information on pediatric oncological diseases. The potential of these new tools, however, implies that all the traditional institutions dedicated to the research and education acquire the skill to use them. The aim of this chapter is presenting my research activity in this area. - Study 3.1. This work describes the availability and the type of video content on YouTube concerning a particular set of pediatric neoplastic diseases, i.e. rhabdomyosarcoma and soft tissue sarcoma. These observations indicate that video sharing websites– like blogs and social media - constitute an easier way for the patients to describe their impressions and experiences of the disease. Moreover, this could help other patients to figure out new strategies to coop with the disease, and provide them with a further support, and opportunities of information and resources sharing. - Study 3.2. This study review the literature on the use of online videos in the health field. In Italy, like in other countries, Internet is an increasingly used source of diseases-related informations, used both by health professionals and patients. In recent years, besides the most common search engines, sanitary information explained in video sharing sites have gained an increased influence. - Study 3.3. Internet and social networks, such as Facebook, have changed the way people communicate, especially young people. They may be extremely useful for adolescent cancer patients. Disease severely limits adolescents’ school attendance and time spent with peers, leading to the risks of a social isolation. Facebook can help young diseased people to keep in touch with their friends. In addition, Facebook makes possible for such adolescents to become friends of other patients, and to stay in touch with people outside the hospital. This is a positive aspect, but it also carries inherent risks. This study emphasizes the importance for patients with cancer of using Facebook, in particular for adolescents. - Study 3.4. The innovative and recently developed experience at the INT, of using on line videos to inform the patients about the pathologies and their treatments is reported.. Chapter 4: The Youth Project. This chapter presents two studies that describe the key aspects of the Youth Project launched in 2011 at the INT pediatric oncology unit and focusing on adolescents and young adult with pediatric tumors. One of the main aims of the Youth Project is to help the older patients to feel more as if they were at home, by providing a dedicated and adequately equipped multifunctional room, together with various activities and events. Patients may also have access to particular services, for their psychosocial support, fertility preserving measures, and the access to care after completing their cancer therapy. This project may become a possible new clinical and organizational model, capable to address the unique needs of adolescent and young adult patients, also in order to bridge the existing lack of their treatment accessibility, their recruitment in clinical trials and in clinical and psycho-social management. Conclusion Overall the work presented in the current thesis represents an attempt to bridge together biological, psychological and social aspects of cancer disease in adolescents adopting a psychosocial approach to provide an integrated support to this special subset of patient. This thesis reveals the complexity of psychological research in a hospital setting, where the constraints imposed by the clinic practice cannot be ignored and it is necessary to take into account issues that affect the real needs of the department in which research is conducted. The psychological intervention in serious organic disease can not be centred only on traditional models of support and psychotherapy, based on a rigorous setting and on treatment of symptoms. We need new models that support the resources of the patients during treatments and even later, with preventive interventions and with different type of helps (psychological support, socialization, entertainment, school in hospital). We also need new languages that are close to the changed ways of communicating and relating of the new generations (Internet, YouTube, Facebook, social network). This work is a starting point for the elaboration of a new model of psychological support in hospital. Studies that composed this thesis also shows that the method and the demands of medical care can be harmonized with psychological methods and intervention through a close working relationship between psychologists and medical doctors.