A descriptive analysis of the immigrant population with a rare disease in the Veneto region, Italy: Utilisation of healthcare services

Introduction: Rare Diseases (RDs) constitute a rather heterogeneous group of disorders that can affect any system. Most RDs are genetic disorders which are often severely disabling, substantially affect life expectancy and impair physical and mental abilities. The number of RD patients in Italy is estimated between 1 and 2 millions. In Italy RDs have been one of the priorities in the policy agenda since 1998. There is a significant body of legislation on the issue of RDs not only on a national level but on a regional level, as well. There is little research on the field of RDs and immigrant population. In general, immigrants face discrimination in various degrees when accessing the healthcare system of the host country due to their ethnicity, religion, age, sex or low socio-economic status. This social exclusion affects their health status directly and indirectly. It is rare for European countries to collect data on ethnic groups. The main challenge in measuring migrant health is defining the term migrant. At least five groups of immigrants have been identified in international literature. Students, economic migrants, asylum seekers, irregular/undocumented migrants and displaced persons. According to the Statistical Report 2011 of the Veneto region, 11.3% of immigrants in Italy have settled in the region, making it the third most attractive destination for immigrants in the country. The foreign residents in Veneto are currently 480,616 making up 9.8% of the population in the region. There is a paucity of information regarding the utilization of the Italian healthcare services by the immigrant population with a RD. To date, various studies have shown the trends of the healthcare utilization by immigrants in the Italian territory for numerous pathologies. However, they focus on diverse geographical areas of the Italian country and different time periods, or use different inclusion criteria for defining the immigrant population under study, or focus primarily on infectious diseases. Objective: Our aim is to conduct a study on immigrants with a RD seeking healthcare in the Veneto region. Our objective is two-fold. Firstly we identify the immigrant population. On a second level a thorough description of the immigrant population is conducted. An effort to determine their demographic profile has been made. The exact number of RD migrant subjects, their age, gender, legal status, nationality, RD diagnosis are displayed. Simultaneously a description of the Italian RD patients will be made resulting to a comparison between the two populations. The variables used to describe the immigrants are also used for the description of the Italian population. The second objective is to describe the utilisation of the healthcare services by immigrants with a RD. One aspect is whether immigrants use the healthcare system for RDs, to what extent and for which diseases. Another aspect is to show the impact of the immigrant population on the Veneto healthcare services. Materials & Methods: We accessed the Istat website (http://demo.istat.it) and we used data on foreign citizens (Cittadini Stranieri) who are residents in Italy. This data categorization and analysis led to the depiction of the presence of foreign citizens in the Veneto region, as well as the possible changes of their number during the course of time. In addition we showed the alterations in the percentage of the foreigners for each continent residing in the Veneto region every year. Data starting from 2001 until October 2011 were taken from the registry of the Rare Diseases, pertaining to patients who are certified with a RD in the Veneto region. Information on the demographc profile of the immigrant population was extracted. From the Health Discharge Records, information used were the dates of admission and discharge from the hospital, duration of hospitalisation, hospital ward, principal diagnosis as well as further diagnosis made during hospitalisation. Results: The temporeal trend of the presence of immigrants in the Veneto region was firstly designed. The augmentation of the immigrant population, and especially of the female one, was highlighted. The Heath Discharge Records demonstrated that the utilization of healthcare services does not change much between the Italian and the immigrant population. The results of the Registry underline the use of the healthcare services by different populations in the Veneto region (immigrants vs. Italians and residents of the Veneto region vs. non residents), as well as the pathologies which are more prevalent in the migrant population. Discussion: Comparison of data between the Health Discharge Records and the Registry of the Veneto region was conducted. The recorded RDs in the Registry differ substantially from the ones recorded in the Health Discharge Records. This may be because the most prevalent diseases in the Registry do not require a strict medical supervision over time. On the contrary the most prevalent diseases in the Health Discharge Records require a systematic medical attention. Furthermore it is highlighted that the percentage of the affected individuals residing outside the Veneto region is greater than the percentage of the subjects residing in Veneto for specific conditions, such as blood disorders. Last but not least, the underlying reasons behind the elevated prevalence of some RDs (palatoschisis, anemias, precocious puberty) were searched and analysed.