Foreign patients and multicultural challenges in pediatric oncology: The experience of the Istituto Nazionale dei Tumori in Milan
Andrea Ferrari, Maura Massimino, and Carlo Alfredo Clerici contributed equally to the work and should be considered co-last authors.
Abstract
This paper describes the complexity of the clinical management of foreign minors suffering from cancer, through the clinical experience of an Italian referral center. The study includes 50 patients less than 18 years (22% of the patients admitted to the unit in 2023), 32 foreigners who were Italian resident and 18 who had come to Italy specifically to receive cancer treatment. Patients who migrate for healthcare reasons often arrive at the referral center with advanced disease or relapse. Numerous socio-cultural issues were reported. To address them, specific strategies were implemented to ensure equal and high-quality care for all patients, respecting their needs.
Abbreviations
-
- NHS
-
- National Health System
-
- SIOP
-
- International Society of Paediatric Oncology
-
- WHO
-
- World Health Organization
1 INTRODUCTION
In recent years, Italy has recorded a substantial increase in its foreign population: as of January 1, 2023, there were 5 million foreigners legally residing in Italy, equal to 8.6% of the total population, with an annual increase of 20,000 people (+0.4%/year).1 This has brought new challenges for the National Health System (NHS), also considering the phenomena of patients traveling outside their country of residence to receive medical care.2-11
Non-citizen people seeking medical care, including asylum seekers and refugees of all ages, is an increasing challenge for high-income countries. In particular in the field of pediatric oncology—where the personalization of care is crucial, in addition to the overall attention given to the patient and family—we have found ourselves facing new medical and regulatory problems, but also cultural, economic, linguistic, and social issues.12, 13
This paper aims to describe the complexity of the clinical management of foreign minors suffering from cancer, through the clinical experience of the Pediatric Oncology Unit of the Fondazione IRCCS Istituto Nazionale dei Tumori di Milano.
2 METHODS AND RESULTS
Foreign patients under the age of 18 treated at our unit in 2023 along with their clinical characteristics were prospectively registered for the purpose of this study.
In total, 50 foreign patients under 18 years were treated in 2023 at our unit (22% of all new admissions in 2023). Of these, 32 were foreigners already residing in Italy, and 18 were patients who came to Italy specifically to receive cancer treatment (migrants).
Data were compared with those retrieved retrospectively from the unit's clinical database for the years 2003 and 2013: the percentage of foreign patients treated in our unit has grown over the years. In 2003, there were 17 (8% of the patients), of whom eight were residents and nine were migrants for treatment, while in 2013 there were 33 (12% of cases), of whom 16 were residents and 17 migrants.
Table 1 contains the main clinical characteristics of the 50 foreign patients treated in 2023. In particular, among the 18 patients who migrated for treatment, 13 arrived at our unit with advanced disease (five with metastatic disease and eight with relapsed disease).
Clinical characteristics | Residents | Migrants | Total |
---|---|---|---|
Number of patients | 32 | 18 | 50 |
Age | |||
0–9 years | 14 | 10 | 24 |
10–17 years | 18 | 8 | 26 |
Gender | |||
Male | 14 | 8 | 22 |
Female | 18 | 10 | 28 |
Country of origin | |||
East Europe | 12 | 9 | 21a |
North Africa | 7 | 4 | 11 |
Asia | 8 | 2 | 10 |
South America | 5 | 3 | 8 |
Tumor types | |||
CNS tumors | 8 | 7 | 15 |
Sarcoma (bone and soft tissue) | 8 | 6 | 14 |
Others | 16 | 7 | 21b |
Tumor stage | |||
First diagnosis, localized disease | 26 | 5 | 31 |
First diagnosis, metastatic disease | 4 | 5 | 9 |
Relapse | 2 | 8 | 10 |
Main challenges | |||
Problem in coverage of health expenses and access to the National Health System | 0 | 16 | 16 |
Incomplete and fragmented medical history and records | 0 | 9 | 9 |
Need for direct economic support (e.g., for food and clothing) | 25 | 16 | 41 |
Need for accommodation | 3 | 12 | 15 |
School (for patients) and job (for parents) | 20 | 10 | 30 |
Major language barriers | 8 | 18 | 26 |
Major socio-cultural barriers (e.g., spiritual and religious needs) |
6 | 11 | 17 |
Relational problems with the hospital team | 4 | 2 | 6 |
Problem of compliance with treatment | 2 | 10 | 12 |
- Abbreviation: CNS, central nervous system.
- a 9 Romania, 6 Albania, 4 Ukraine, 1 Lithuania, 1 Slovenia.
- b 6 Neuroblastoma, 3 non-Hodgkin's lymphoma, 3 Hodgkin's disease, 3 Wilms’ tumor; 5 rare tumors.
Many different critical aspects were reported. The need for economic support, language barriers, and socio-cultural barriers were major challenges for both residents and migrants. The problem of covering health expenses and access to the NHS was a major challenge for migrant patients. In Italy, the NHS fully covers medical expenses for most clinical situations, and in particular for cancer patients treated in public hospitals. Foreign patients who reside in Italy are registered with the NHS and receive treatment in the same way as Italian citizens. Those who migrate for treatment may have different options to access the NHS, depending on their country of origin (if it is part or not of the European Community). The process to obtain a visa for medical treatment and registration with the NHS may require various weeks.
A further issue was the problem of compliance with treatment, reported in 10/18 migrants.
- - Healthcare: the support given to patients to navigate and obtain a visa for medical treatment and registration with the NHS;
- - Accommodation: CasaAmica (that means “friendly house”) is a residential facility close to our hospital that offers a community environment and where it is also possible to find shared support;
- - Medical literacy: the “Parole di mamma” project gives the parents of our foreign patients the opportunity to learn Italian;
- - School: the “CLASS 0” project for schooling foreign children;
- - Cultural mediators and interpretation services: the collaboration with cultural mediators, present in the hospital on call, offers language interpretation services to ensure that medical information is understood correctly, and also that the patients’ needs, uses, and beliefs are fully understood by the staff (interpreting not only words but also the sense of disorientation and suffering).
Patients were offered personalized psychological counseling, an aspect that is of high importance for families who, in addition to the trauma of the childhood cancer diagnosis, face the destabilizing situation of treatment in a foreign country.
A major issue concerns the coverage of all expenses. The heterogeneity of patients by age and size of the entire family unit, tumor type, and treatment plan (in terms of duration and type of therapy) makes it difficult to calculate the economic burden of a single patient. We can approximately calculate a cost of between 50,000 and 100,000 euros for an average patient who receives multidisciplinary treatment for a 6-month period. Depending on the situation, these costs are covered by the NHS or, at least in part, by associations and charities. Costs for food, accommodation, supportive services, and others may be around 10,000 euros for an average period of 6 months (costs always covered by associations and charities).
3 DISCUSSION
This paper aims to generate interest around the complexity of the clinical management of foreign minors suffering from cancer. This is an emerging problem, that is, in our series 22% of the patients admitted to the unit in 2023 were foreigners (with the two different categories, residents from Italy, or patients who arrived from abroad specifically for cancer treatment). In fact, globalization has led to an increase in health migration (particularly, from countries with low healthcare expenditure to specialized care centers). Moreover, recently, the pediatric oncology community had to address the need to care for children evacuated from Ukraine (an activity that our unit has been involved in since the early days of the crisis).14, 15 It should be noted that our experience is not directly related to either the Global Initiative for Childhood Cancer promoted by the World Health Organization (WHO) and the St. Jude Children's Research Hospital16 or the Safer Ukraine project launched by the St. Jude Global.17
Our study has highlighted some important aspects: (i) patients who migrate for healthcare reasons often arrive with advanced disease or relapse; (ii) migrant patients may often have problem of compliance with treatment (maybe related to major language and cultural barriers, which can make it difficult to understand the proposed treatments); (iii) multiple social issues complicate the care for patients and their families; (iv) practical challenges such as medical insurance and expenses, added to basic needs in families with limited economic resources.
While representing a local experience that may not translate to all nations and centers, our integrated strategy model with collaboration with various associations, charities, and services serves as an example of the approach to the social and cultural differences among foreign patients.
International initiatives directly focusing on the cooperation between different national health systems and cancer centers are necessary to better address the issue of trans-border migration in pediatric cancer. The European Reference Network on Paediatric Cancer (ERN PaedCan) (https://paedcan.ern-net.eu/), for example, aims to “reduce inequalities in childhood cancer survival by providing high-quality, accessible, and cost-effective cross-border healthcare to children and adolescents with cancer, regardless of where they live.” The development of a dedicated committee within the framework of the International Society of Paediatric Oncology (SIOP) could be a challenging attempt to address this issue globally.
ACKNOWLEDGMENTS
The authors would like to thank the numerous associations that allow us to work with and for the families of our young patients, and in particular Fondazione Bianca Garavaglia, Lega Italiana per la Lotta contro i Tumori, CasaAmica, Associazione Vittoria, Comitato Genitori Pediatria, Casa Unitalsi Bambini-Fabrizio Frizzi, Salute Donna.
CONFLICT OF INTEREST STATEMENT
The authors declare no conflicts of interest.
Open Research
DATA AVAILABILITY STATEMENT
Data available on request from the authors.