How Did Adolescents With Cancer Experience the COVID-19 Pandemic? A Report From Italian Pediatric Hematology Oncology Association Centers.

PURPOSE: This study set out to evaluate the psychosocial effects of coronavirus disease 2019 (COVID-19) among adolescents with cancer, and whether these effects are significantly different among adolescents who were undergoing therapy or had completed it. MATERIALS AND METHODS: The AIEOP Adolescents Working Group and the AIEOP Psychosocial Working Group adapted a questionnaire, which was completed by 214 adolescent cancer patients ( Mage =16.3 y, range: 15 to 19 y old) treated at 16 AIEOP centers in the North (38%), South (31%), and Center (31%) of Italy. RESULTS: The results highlighted that fear of the virus is equally distributed among adolescent cancer patients, with patients being particularly concerned about their parents and families. The adolescents reported that had no difficulty in following individual safety measures: they used personal protective equipment and they were attentive to their own health and adhering to the rules imposed by doctors and the wider community. There are very few, limited differences between adolescents undergoing treatment (active group) and those who have completed treatment (follow-up group). The reminder of their own therapy experience triggered by the use of personal protective equipment, and the more common refusal to follow some restrictions were the only 2 behaviors by which the follow-up group differed significantly from the adolescents in the active group. CONCLUSIONS: Adolescents with cancer seem to have coped well with the pandemic: although they were very afraid of the virus for themselves and their families, and had to limit their social contact, they did comply with the restrictions. Their experience of cancer probably also had a positive effect in cultivating adolescents who are more responsible and resilient in emergency situations such as the pandemic.

No Child Should Be Left Behind by COVID-19: A Report about the COVID-19 Pandemic Experience in Children and Adolescents with Acute or Chronic Disease Treated at a Pediatric Referral Hospital in Italy.

BACKGROUND: The pandemic of coronavirus disease 2019 (COVID-19) was undoubtedly a stressful experience for everyone. General opinion believed that children with acute or chronic illness could experience additional burden, but this is not confirmed. The aim of this study is to understand how children and adolescents already suffering from acute or chronic illness (e.g., cancer, cystic fibrosis, neuropsychiatric disorders) feel about the COVID-19 pandemic, and if the experience is significantly different between these children and children without illness. METHODS: Children and adolescents affected by acute or chronic illness (named the "fragile group") treated at the Regina Margherita Children Hospital in Italy, were enrolled in the study by filling a questionnaire about their pandemic experiences. Also, a group of children and adolescents without acute or chronic illness (named the "low-risk group") recruited in the emergency department of the hospital, participated in the study in order to compare experiences. RESULTS: The study group was composed of 166 children and adolescents (Median age = 12 yrs; 78% fragile group, 22% low-risk group). Participants experienced a general state of fear of the virus and of a potential infection for both themselves and their families, while feelings and thoughts that interfere with daily functioning were less frequent. The fragile group seems to be more resilient towards the pandemic situation than low-risk group and some differences on the basis of the type of illness were found in the fragile group. CONCLUSIONS: Dedicated psychosocial intervention must be proposed in order to support fragile children and adolescents' well-being during the pandemic, also on the basis of their clinical and mental history.

The Use of Psychotropic Medication in Pediatric Oncology for Acute Psychological and Psychiatric Problems: Balancing Risks and Benefits.

Severe acute behavioral and emotional problems represent one of the most serious treatment-related adverse effects for children and adolescents who have cancer. The critical and severe nature of these symptoms often makes necessary the use of psychotropic drugs. A working group composed of experts in multiple disciplines had the task of creating an agreement regarding a management plan for severe acute behavioral and emotional problems (SABEPs) in children and adolescents treated for cancer. To obtain global information on the use of psychotropic drugs in pediatric oncology, the working group first developed and mailed a 15-item questionnaire to many Italian pediatric oncology centers. Overall, an evident lack of knowledge and education regarding the use of psychotropic medications for the treatment of SABEPs was found. Thus, by referring to an adapted version of the Delphi method of consensus and standard methods for the elaboration of clinical questions (PICOs), the working group elaborated evidence-based recommendations for psychotropic drugs in the pediatric oncology setting. Furthermore, based on a thorough multivariate analysis of needs and difficulties, a comprehensive management flow was developed to optimize therapeutic interventions, which allows more accurate and efficient matching of the acute needs of patients while guiding treatment options.

[The psychological taking charge of the oncological patient: a 3 years study on the activities of psychologists of the Piedmont and Aosta Valley Oncology Network.] / La presa in carico psicologica del paziente oncologico: uno studio di 3 anni sulle attività degli psiconcologi della Rete Oncologica Piemonte e Valle d'Aosta.

INTRODUCTION: Tumor pathology is a bio-psycho-social event that has consequences for a person's life from all points of view, physical, psychological, relational and social. The mental discomfort that chronic pain and neoplastic pathology brings with it is present in 25-40% of cases, but the request for help to a psychologist, where not provided for by a specific diagnostic therapeutic assistance path, is in the case of medical pathologies less than 3%. The Piedmont and Valle d'Aosta Oncology Network has the role of coordinating the network of services that deal with the care of the cancer patient, including those relating to psycho-oncology. The article presents data relating to the activities of psycho-oncologists of the Network in the years 2017, 2018 and 2019. METHODS: A shared tool is used to collect the data, a database, made up of various variables deemed necessary to be able to photograph the activities carried out by the psycho-oncologists belonging to the Network. The database has been the subject of comparison between psychologists and has led to continuous revisions of the tool from 2017 to 2019, more accurate version. RESULTS: The 3-year study involved 2188 (2017), 3341 (2018) and 3457 (2019) adult patients or their families treated by psycho-oncologists. Patients are predominantly female with breast cancer, married/cohabiting, whose pre-eminent discomfort is anxiety, combined with the depressive component. The psychological intervention is mainly psychological support (level 2). DISCUSSION AND CONCLUSIONS: Psychological management is an important intervention in the path of the cancer patient. The systematic collection of data made it possible to detect an increase in patients who accessed the psycho-oncology service, from an estimate of 1/3% in 2009 to 4.6% in 2018/2019.

A Textual Analysis for Understanding the Relations and the Identity Construction in Adolescent Oncology Patients: Retrospective Personal Views in Order to Educate Health Professionals.

Patient input is critical for all aspects of value-based healthcare design. This contribution describes the following: the specifics of communications with doctors regarding the disease in adolescents and young adults with cancer; the patients' thoughts, emotions and changes in self-perception; "other meanings" taking shape along the treatment pathway; and reacting modes to the disease and treatments. Thirty-five Italian AYA patients in follow-up (age 18-24) were involved in a plenary interview on the cited aspects of their oncological experience. The answers were analyzed by MADIT (Analysis Methodology of Computerized Textual Data) with the software SPAD. MADIT allowed us to perform text analysis, describe the graphical outcomes and discuss the results. Respondents took a first-person perspective and their personal narrative recall had objective and unequivocal connotations. Experience was narrated mainly by maintenance repertoires that fix the reality of disease, its treatments and personal identity. The account focused on the tumor and on an agreed approach to it. The time "after" was described as a distressing space that defines them. Making sense of the events was considered a significant help. Professionals need to focus on the discursive repertoires of communication with which the inner and outer reality are built. Lastly, these patients required a two-way dialogue throughout the entire caring process.

Diagnostic Delay in Adolescents with Cancer During COVID-19 Pandemic: A New Price for Our Patients to Pay.

Worldwide, the coronavirus 19 disease pandemic caused a worse chance of a timely diagnosis for cancer patients. We conducted a retrospective analysis of new diagnoses registered in the national pediatric oncology database, comparing the first lockdown period (March-May 2020) with the same period of 2015-2019. The total number of cases (0-19 years) dropped by 20.8% (from 441 between 2015 and 2019 to 349 in 2020). A major reduction was observed for adolescents (15-19 years) (-32.9%) and for adolescents with solid tumors (-56.4%, p = 0.03). Our data suggest that the enforced lockdown reduced the possibility for these already vulnerable patients to access the referral centers.

Validation of a Tool to Assess the Multidimensional Needs of the Parents of Children With Cancer.

BACKGROUND: An assessment of the supportive care needs that parents whose children are suffering from cancer is crucial to providing maximum quality care in pediatric oncology. OBJECTIVE: To examine the psychometric properties of the Cancer Patient Needs Questionnaire (CPNQ) and validate the revised version (rCPNQ) of this multidimensional tool that evaluates the needs of parents whose child has cancer. METHODS: The original rCPNQ comprised 45 items and 6 dimensions of need. The original rCPNQ was first translated into Italian and then validated for use by performing an exploratory factor analysis with a subsequent reliability analysis for the entire scale and each factor found. RESULTS: One hundred forty-nine parents completed the Italian version of the rCPNQ, where a preliminary correlation analysis revealed the need for different psychometric item properties in the Italian population, with 22 items being excluded in the final model. The results of an exploratory factor analysis indicated a structure encompassing 4 factors of needs: (1) child-related emotional, (2) functional, (3) healthcare-related, and (4) emotional. The final version showed satisfactory internal consistency (subscales' Cronbach's α all >.80) and stability. CONCLUSION: The Italian version of the rCPNQ is a shorter statistically validated version of the original scale and is a valid measure for professionals to use when assessing parents' supportive care requirements. IMPLICATIONS FOR PRACTICE: The Italian version of rCPNQ can be used with professionals when assessing parents of children with cancer to assess their perceptions of their ill child's emotional, functional, and healthcare needs.

Discussing communication issues and needs with adolescents with cancer.

Adolescents with cancer face unique medical and psychosocial challenges and it is important for their doctors to understand the psychological manifestations of cancer diagnosis and treatment in this age group. Using patient dialogues, we describe how simultaneous participation of physicians and patients could help to give voice to patient needs, in particular concerning communication.

Effects of a high-intensity psychosocial intervention among child-parent units in pediatric oncology.

AIM: To compare the efficacy of a high-intensity psychosocial intervention with standardized usual care in countering psychosocial complexity among child-parent units in a pediatric oncology setting. METHODS: Two hundred pediatric oncology patients and their parents were recruited from Italian hospitals. A total of 81 child-parent units were assigned to the high-intensity psychosocial intervention and 119 child-parent units to standardized usual care. Psychosocial factors were assessed before and 1 year after intervention to measure efficacy. RESULTS: More improvements over time were observed in the high-intensity intervention group of child-parent units compared to the standard intervention group. CONCLUSION: An intensive, structured, and tailored high-intensity intervention positively affects the psychosocial factors of child-parent units. Patients and families should have access to intensive psychosocial support throughout the cancer trajectory.

Evolving Services for Adolescents with Cancer in Italy: Access to Pediatric Oncology Centers and Dedicated Projects.

Purpose: To describe how the provision of services for adolescents with cancer has evolved in Italy, the study evaluated access to pediatric oncology centers affiliated to the national cooperative group Associazione Italiana Ematologia Oncologia Pediatrica (AIEOP), and the development of dedicated local projects. Methods: We calculated the observed/expected (O/E) ratio of adolescent patients (15-19 years old) admitted to AIEOP centers during the years 2013-2017. Observed cases were obtained from the AIEOP database (model 1.01). Expected cases were calculated on the incidence rates derived from the population-based registries. In addition, a questionnaire investigated the presence of any formal upper age limits for admitting patients, and to the development of local projects. Results: In the years 2013-2017, 9534 cases of cancer were registered in the AIEOP database, that is, 8031 children (0-14 years) and 1503 adolescents (15-19 years). The overall O/E ratio was 0.81, that is, 1.06 for children, and 0.37 for adolescents, and differed according the different tumor types. Concerning the questionnaire, 26% of centers reported age limits <18 years. Nineteen centers reported to have local projects dedicated to adolescents. Conclusions: The study shows an improvement in the services for adolescents in Italy, with an increase percentage of cases treated at AIEOP centers (from 10% of previous study, to 37%), the decrease of centers with admission age limits <18 years (from 44% 10 years ago, to 26%), and the development of many specific local projects. Effective cooperation with adult oncology societies and government recognition remain goals to be achieved.

A consensus conference report on defining the eligibility criteria for pediatric palliative care in Italy.

BACKGROUND: The definition of the eligibility criteria of newborn, infant, child, or adolescent patients for palliative care (PC) is complicated by the fact that these patients generally present with very specific case histories that make it inadvisable to directly adopt existing PC protocols devised for adult patients. Thus, the goal of this paper is to define a standard set of criteria for establishing pediatric palliative care (PPC) eligibility. METHODS: The method adopted was that of the consensus conference. According to the guidelines issued by the Higher Institute of Health, the Board of the Italian Society for Palliative Care (i.e. steering committee) appointed a multidisciplinary group of eight health care professionals (i.e. doctors, nurses and psychologists) who worked from May 2014 to February 2016 to reach a consensus over PPC eligibility. This panel of relevant experts redacted a report summarizing all available scientific information concerning PPC, which was then submitted to the attention of a multidisciplinary jury composed of specialists and non-specialists of the field. The document thus produced was subsequently reviewed by an extended team of experts. RESULTS: The consensus conference drafted a final document determining the guidelines for PPC eligibility of newborns, infants, children, and adolescents suffering from either oncological or non-oncological diseases. CONCLUSIONS: This report provides health care providers with practical guidelines on how to define the eligibility of pediatric patients for PPC. Given the current situation in Italy, these guidelines will be instrumental in assisting the implementation of adequate generalist and specialist PPC services as well as in helping policymakers draft and implement national legislation pertaining to PPC.

Proper use of social media by health operators in the pediatric oncohematological setting: Consensus statement from the Italian Pediatric Hematology and Oncology Association (AIEOP).

Social media are powerful means of communication that can also have an important role in the healthcare sector. They are sometimes seen with diffidence in the healthcare setting, partly because they risk blurring professional boundaries. This issue is particularly relevant to relations between caregivers and adolescent patients. The Italian Pediatric Hematology and Oncology Association created a multidisciplinary working group to develop some shared recommendations on this issue. After reviewing the literature, the working group prepared a consensus statement in an effort to suggest an analytical approach rather than restrictive rules.

The biopsychosocial condition of childhood cancer survivors in the transition towards adult care: a national survey from the joint pediatric and adult transition care group.

BACKGROUND: To provide successful transfer from childhood to adult-oriented healthcare is one of the priorities of survivorship care plans. PURPOSE: This study describes adolescent and young adult childhood cancer survivors' conditions at the moment of the transition to adult care deepening their biological, psychological, social and assistant state and their associations with socio-demographic and clinical characteristics. METHODS: A biopsychosocial check-list in four health domains (biological, psychological, social and assistant) was filled in by healthcare professionals (oncologists, psychologists, social workers and nurses) through qualitative interviews and clinical observations of 79 survivors (58% boys; Mage = 20 years old) at the moment of the transition from the Pediatric Oncology Unit to the Transition Unit of the Childhood Cancer Survivors. RESULTS: At the moment of transition, 38% of survivors showed a positive condition in all the four health domains without any kind of impairment. Biological (37%) and psychological areas (44%) were found to be those with major incidence of impairments. Association phenomena were found between psychological and social condition (p < 0.05) and between social and assistant condition (p < 0.05). Biological condition was also significantly associated with the type of cancer (χ = 6,2414, p < 0.05). CONCLUSION: Although many survivors entered in adult care system without any impairment, the biopsychosocial approach highlighted that there is a presence of impairments in at least one of the main health domains.

Body Image Discomfort of Adolescent and Young Adult Hematologic Cancer Survivors.

This study focuses on body image discomfort (BID) of 50 adolescent and young adult (AYA) hematologic cancer survivors (age range 15-23; 52% males). The study results were obtained through data from a self-report questionnaire: the Body Uneasiness Test. Findings differed according to gender: a greater proportion of females were in the Risk category of impaired body image than males (χ2 = 5.258, p < 0.05). No significant body image differences were found according to the type of diagnosis or to the length of survival. To manage survivors' BIDs and to improve their quality of life, assessing BID in AYA cancer survivors is important for identifying those who might be in need of additional supportive care or a program.

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 counselor's 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.

Adolescents with Cancer in Italy: Improving Access to National Cooperative Pediatric Oncology Group (AIEOP) Centers.

This analysis compared the numbers of patients treated at Italian pediatric oncology group (Associazione Italiana Ematologia Oncologia Pediatrica [AIEOP]) centers with the numbers of cases predicted according to the population-based registry. It considered 32,431 patients registered in the AIEOP database (1989-2012). The ratio of observed (O) to expected (E) cases was 0.79 for children (0-14 years old) and 0.15 for adolescents (15-19 years old). The proportion of adolescents increased significantly over the years, however, from 0.05 in the earliest period to 0.10, 0.18, and then 0.28 in the latest period of observation, suggesting a greater efficacy of local/national programs dedicated to adolescents.