We describe the case of a woman cured of osteosarcoma who took part in a mono-institutional study using different questionnaires to assess pediatric cancer survivors’ quality of life and behavioral features 12 years after completing her cancer treatment.
The high levels of psychological distress and psychopathologic symptoms revealed by this patient prompted us to offer her specific and prolonged support at our institution, since she refused to seek the help of other psychiatric services. The woman revealed a dysfunctional social and family setting and a borderline personality disorder. She was hospitalized after attempting suicide. No psychological distress had previously come to light during her long follow-up for cancer.
Cancer survivors are at risk of psychological and behavioral problems, so they should be followed up over time. Questionnaires and standard scales are important, but not enough: the physician-patient relationship is crucial to bring out a patient’s psychological issues and needs. This means that dedicated resources should be made available, whenever possible.
Tumori 2016; 102(Suppl. 2): e113 - e115
Article Type: CASE REPORT
AuthorsCristina Meazza, Laura Veneroni, Marta Podda, Monica Terenziani, Roberto Luksch, Andrea Ferrari, Serena Catania, Elisabetta Schiavello, Barbara Giacon, Nadia Puma, Luca Bergamaschi, Luisa Roncari, Carlo Alfredo Clerici
- • Accepted on 17/08/2015
- • Available online on 15/10/2015
- • Published online on 11/11/2016
This article is available as full text PDF.
While the majority of pediatric cancer patients can be cured, and the 5-year overall survival rate now exceeds 80% (1), many survivors experience at least one long-term adverse effect of their cancer and/or treatments, including physical, psychosocial, and neurocognitive problems (2, 3). Given the better survival rates, cancer survivors’ health risk behavior is attracting increasing interest, and becoming a public health issue (4, 5).
In 2011, we began an observational study to assess the quality of life and behavioral features of survivors of childhood osteosarcoma, using several self-report questionnaires, such as the Toronto Extremity Salvage Score, the 36-item Short Form Health Survey, the Quality of Life for Cancer Survivors scale, the Symptom Checklist-90, and the Big Five Questionnaire, sent by mail or delivered by hand to patients during their oncologic follow-up.
Among the group of patients taking part in the study, one woman answered the questionnaires immediately after receiving them and returned them to us with an urgent request for psychological support. This woman forms the object of the present case report.
A 25-year-old woman who had been treated at 12 years of age with chemotherapy plus conservative surgery with a vascular fibula graft for a high-grade osteosarcoma concluded her oncologic follow-up in 2011. Early in 2012, we invited her to take part in our institutional study assessing quality of life and behavioral features of childhood osteosarcoma survivors. The scores she obtained in the questionnaires were indicative of high levels of psychological distress and psychopathologic symptoms. Our resident psychologists consequently arranged an appointment with her, which she promptly attended in the hope of being able to talk freely to someone interested in her numerous problems. She said that nobody in her family was ever able to care for and pay attention to her. The patient reported feeling as if she had been adopted by someone. She showed a severely psychopathologic awkwardness, with eating and sleep disorders, and evident depression, fitting the definition of major depressive disorder (
There are reports in the literature of patients treated for severe physical diseases such as cancer being at higher risk of psychological and behavioral problems than the general population (6, 7). Other authors investigating the psychological sequelae of serious illness found that survivors often had much the same levels of psychological symptoms as healthy controls. The survivors reportedly at higher risk of psychological sequelae are characterized by female sex, lower socioeconomic status, previous brain or bone tumors, exposure to cranial radiation, and a history of intensive or numerous treatments (8, 9).
Generally speaking, studies have assessed physical health-related quality of life. The relationship between survivors’ mental health, behavioral aspects, and long-term adaptation to the experience of disease, and the ways in which their behavior can influence their quality of life, irrespective of their negative life experiences, has been largely neglected.
Very little has been published on the emotional features of survivors of pediatric tumors, and only mono-institutional experiences have been considered, or single authors have examined these issues, despite their evident implications for daily clinical practice.
The variety of posttraumatic evolution mechanisms and the influence of social and family factors also lead to single clinical histories being examined and most studies report on standardized instruments only.
Given the above considerations, we launched an observational study in which we adopted several different questionnaires to assess the quality of life, behavior, and psychological features of osteosarcoma survivors (at least 18 years of age and/or 5 years after completing their treatment). In addition to using standardized instruments, we conducted an unstructured clinical interview with patients to enable them to report difficulties that they would otherwise have continued to deny. The questionnaires were used as a psychometric assessment tool, but also as an opportunity for patients to express distress that persisted even after many years. The patient described here had never showed signs of psychological distress during her active cancer follow-up, but answering the questionnaires gave her a chance to ask for help and express her anguish. Often, follow-up appointments are not long enough to investigate physical and psychological aspects, and patients may have difficulty in expressing their anxieties and fears, and tend to minimize them. Doctors should learn to notice telltale signs and take the time to question patients about their social life with a view to identifying any psychopathologic traits.
The dedicated resources that we employed-doctors and nursing staff, appropriate spaces, and a great deal of time-to listen to our patients, and support and treat them, were expensive for the public health system.
We are unable to say whether the psychiatric condition of our patient was related to her prior psychological, family, and social problems, or what impact the cancer had on the development of her psychiatric behavior. As soon as any psychological distress becomes evident, the need to take a patient into care should be examined together with territorial psychiatric services, and the patient’s collaboration is essential for best possible management.
We need to bear in mind that long-term cancer survivors need to be followed up over time to check on any health-related, psychological, and/or and social problems: the cost of cure can be high, both for the individual and for the community.
- Meazza, Cristina [PubMed] [Google Scholar] 1, * Corresponding Author (firstname.lastname@example.org)
- Veneroni, Laura [PubMed] [Google Scholar] 1
- Podda, Marta [PubMed] [Google Scholar] 1
- Terenziani, Monica [PubMed] [Google Scholar] 1
- Luksch, Roberto [PubMed] [Google Scholar] 1
- Ferrari, Andrea [PubMed] [Google Scholar] 1
- Catania, Serena [PubMed] [Google Scholar] 1
- Schiavello, Elisabetta [PubMed] [Google Scholar] 1
- Giacon, Barbara [PubMed] [Google Scholar] 1
- Puma, Nadia [PubMed] [Google Scholar] 1
- Bergamaschi, Luca [PubMed] [Google Scholar] 1
- Roncari, Luisa [PubMed] [Google Scholar] 1
- Clerici, Carlo Alfredo [PubMed] [Google Scholar] 2, 3
Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy
Department of Biomolecular Sciences and Biotechnology, Psychology Section, Faculty of Medicine, University of Milan, Milan - Italy
Clinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy