2023-05-25 13:17:09
There is still “much to be done” to ensure adequate support and assistance to intersex children and accompany them in their growth, as they become teenagers and then arrive at adulthood. There is still “much to be done” to ensure their well-being, and treatments deemed satisfactory by all people who live with disorders of sexual differentiation (DSD) or, as we prefer to call them, differences in the development of sex or even variations in the characteristics of the sex. A very heterogeneous and complex world of conditions, which poses a still unresolved “public health problem”, admit the specialists who deal with it. The node of ‘transitional care’ – connection assistance that ferries the patient from the pediatric to the adult phase – was discussed in recent days at the San Raffaele hospital in Milan on the occasion of a seminar on DSD, rare conditions – but not too much – in which there is an abnormal development of the chromosomal sex, of the gonadal one and finally of the phenotypic one (they affect a total of about one child every 4,500 births).
An appeal, expressed by Giuseppe Cretì, president of Siup (Italian Society of Pediatric Urology), is addressed to the institutions: “We must develop an innovative plan of transitional care, and this is also a solicitation for politics. We need modern medicine for these people In general, 60% of adolescents with chronic conditions do not receive transitional care.” In the background are the burden of suffering that accompanies these pathologies, stories of patients one different from the other and not generalizable, the claims of the activists who bring to the table the two admonitions addressed by the UN also to Italy on intersex genital mutilation. An indication of the complexity of the issue of correct assistance to be guaranteed to these people, and of the complexity of a category under which ‘umbrella’ health needs and needs related to mental and social well-being end up.
These are sometimes difficult clinical situations to manage, particularly in those cases in which the attribution of the phenotypic sex is uncertain. Expressing the need to address these problems in a structured and personalized way, to adapt to the whole range of needs of which these people are bearers, are the specialists themselves, who move within an evolving sector on the wave of progress in medicine and of changing sensitivities. “Progress in the treatment of major pediatric urological diseases has led to an extension of life expectancy – observes Cretì – And this leads to care needs that must be taken care of by specialists in adulthood. The transition between these two phases is an element key”.
“The assistance must be multidisciplinary. With support also in the social field – continues Cretì – In Italy there are no standardized structured projects. There is an absence of long-term programs in the territorial and hospital areas. Or we can do them at home ‘, each in a personal way. But institutionally there is no one who calls pediatric and adult specialists to a technical table and says: let’s make a plan. With consequent discomfort and distrust of the patient and the families, who among others must be involved as an active part”.
“A transition that fails – reflects Arianna Lesma, head of pediatric urology at the Irccs San Raffaele hospital in Milan – can have catastrophic consequences, because the patient begins to perform fewer checks, loses interest in the timing of the tests, is less attentive to therapies must follow and there is the risk of perhaps ruining many good results obtained in the pediatric age from an endocrinological point of view, as well as facing new pathologies, osteoporosis or tumors, not to mention the psychological aspect of not finding references for adulthood : the risk is to feel isolated”. In short, there is what is defined as a “middle ground”, still sparsely populated, which must be inhabited by trained specialists (urologists, endocrinologists, geneticists, gynecologists, andrologists, psychologists) and expert centres.
And there are practical aspects to contend with. One, for example, is highlighted by Andrea Salonia, urologist and andrologist at the San Raffaele hospital and associate professor at the Vita-Salute San Raffaele university: “We have recently begun to deal with the problem” of the transition from the pediatric to the adult age “in the masculine. It implies less evident aspects, much more understated and from a psychological point of view highly disabling. Dealing with parenting difficulties, I often find myself dealing with cases of patients who arrive and do not know they have an underlying genetic problem. It must be said that it is in the last 30 years that a sensitivity to a very complex problem has developed. We are learning, and aspects such as bone health and the cardiological issue must also be considered, which until now have not been taken into consideration”.
We need a network, the specialists indicate, and support for intersex-DSD people from North to South. “Today there are sporadic operational responses and we have 20 regional health centers – observes Cretì – In a national survey that we conducted in 2018 in 20 pediatric urology, when asked if there is an operational transition program for highly complex urological pathologies, 70% answered no. My proposals are to create a mixed pediatric-adult working group to build a transition model , submit it to patients and families and activate it with an adaptation to the single specificities of the individual.However, some ‘Lea (Essential Levels of assistance) of the transition’ must be identified, because there cannot exist on the national territory a place where no one knows what this process is At least an initial treatment approach is needed, to then refer the patient to identified hub centres. And it is necessary to invest in training”.
The transition of care from pediatric to adult specialists “is a process that is built over the years, which the team builds with the family and the patient, and which continues – points out Lesma – We have tried to develop a transitional proposal care, evaluating the literature, comparing ourselves with other specialists and collecting the needs expressed by the patients we have surveyed.Our proposal is developed in 4 stages.The first three take place in the pediatric setting: the patients who can begin this step are identified and talks with the families, starting to prepare a report to be offered to the adult specialists; then a joint visit is made with the two teams, also in the presence of the families. On this occasion, the patient’s needs and requests are listened to and then they must be established the investigations to be performed, the third and last step in a pediatric environment”.
Thus, concludes Lesma, “the last step is the passage of the patient into the adult field”, with specialists who differ according to the person to be followed and the way they have grown up. “There is no age for the passing of the baton – the expert finally points out – it depends on when the patient is ready and this can happen at 16, or delaying until 21. Now we aim to understand more and more what our patients think of our work. The programs will have to be increasingly tailor-made. And we must improve information from the point of view of psychology, sexuality and reproductive capacity. Another objective is to start a multi-centre cooperation”.
#plan #middle #age