2023-10-02 07:54:05
by Ruggiero Corcella
Scarce and unclear information, excessive bureaucracy and lack of dialogue between doctors make the transition from rheumatologist care fraught with obstacles
The transition from pediatric to adulthood is still full of obstacles for those suffering from a rheumatological disease. Also on the health front. People lack information. As always, you have to worry about everything, even this transition, by itself…. There should be more timeliness in communicating to the family about when to prepare the documentation for the transition request: this is what some of the parents interviewed in the research carried out by Apmarr (National Association of People with Rheumatological and Rare Diseases) through narrative medicine interviews and by the We – Research survey institute in collaboration with Reumaped (Italian Society of Pediatric Rheumatology), on the occasion of World Rheumatological Diseases Day which is celebrated on 12 October .
Uncomfortable situation
The aim of the investigation is to confirm what we as an association have always known and seen in people with rheumatological diseases – explains Antonella Celano, president of Apmarr -, that is, the discomfort of the complex transition from pediatric to adult doctors, which represents a challenge for young patients and their families. This data will be fundamental to start a working table with the main players in the field of rheumatology, with the aim of including the transition in the LEAs (Essential Levels of Care).
The survey involved 694 people, women and men between 16 and 75 years old, caregivers of young people between 14 and 20 years old with both rheumatological and non-rheumatological pathologies. Well, if, in general, more than half of the sample (55.3%) reported having had a positive experience in the handover between carers, 11.3% still reported a problematic and difficult path.
Deficiencies
What are the obstacles that families and patients continue to face? The main obstacles that families and patients face in the transition from the pediatric to the adult rheumatologist – says the president of Apmarr – include the lack of clear information on this process (24% of those interviewed complained about it, ed.), a often unstructured between the pediatric and adult specialists and the risk of interruptions in therapeutic continuity. The consequences can be serious. These factors generate anxiety and uncertainty, can cause delays in accessing necessary care and require adequate support. Additionally, the transition brings psychological and social challenges, such as adapting to new medical environments and increased responsibility for one’s own health. Addressing these issues is critical to ensuring a smooth and safe transition for young patients and their families, Celano says.
Too much paperwork
In fact, 26.4% of those interviewed have not yet changed doctors precisely because they don’t know how to do it or who to contact. Another barrier represented by excessive bureaucracy, reported by almost 19% of caregivers. The lack of information emerges as a significant problem, a concern that we, as Apmarr, have encountered repeatedly – comments Celano -. The lack of information can be attributed to the fact that this step is considered a “Translation”, that is, almost a simple “move”, rather than a “Transition”. The crucial distinction between the two is that there is no structured and officially recognized path for this phase, and, in particular, it is not included in the LEAs.
Adequate support
This means that effective communication is often lacking, unless there is a proactive initiative from the two rheumatology specialists involved. A situation that also causes psychological repercussions in patients and their families, making the need to define a more structured approach and adequate support to successfully face this transition urgent, he adds.
Clinical history
Even being able to convey the patient’s medical history becomes a considerable effort: for 16% of caregivers, communication with the doctor on this topic is not at all or not very easy, with a greater proportion among those who care for rheumatology patients compared to those who have caring for children and young people without the pathology. We would need a transfer of data perhaps done with the presence of both of us with the 15-year-old patient: both the pediatrician and the general practitioner, says one of the people interviewed. All this could be overcome if the electronic health record really worked. The medical records, after due authorization from the patient, should be automatically transferred in full to the doctor you choose, underlines another caregiver.
He continues to care
Thus for 19% of the sample it is also difficult and problematic to ensure continuity of care: In my experience and that of my daughter it was like starting all over again at the slightest adversity – reports a mother -. There was poor communication and in any case, since uveitis was also present, the rheumatology and ophthalmology departments did not show synergy in dealing with the case. In the previous phase, a constant dialogue had been established with the paediatrician, and the disease was followed with greater attention also from a human perspective. The transition therefore becomes a highly stressful event. The change, in adolescence, from the pediatrician, with whom a significant relationship of trust had been established, to the adult doctor, represents a leap in the dark for many parents. It would be essential to establish structured and officially recognized paths. To achieve this, it is essential to include transition in the LEAs. Only in this way, in our opinion, the transition would take place smoothly not only for the patients, but also for the specialists involved, guaranteeing a more fluid management of this crucial phase in the life of those who are ill, concludes the president of Apmarr.
Conferences, podcasts and artistic performances in the square
On the occasion of World Rheumatological Disease Day (12 October), Apmarr is organizing a series of initiatives to raise awareness of these complex pathologies which can affect people of all ages, causing pain, inflammation and often limiting mobility and quality of life. On 5 October, at the Chamber of Deputies (Sala del Refettorio, Rome), the conference The transition from pediatric to adult age: a leap in the dark? will take place, in which the research Photography of a complex transition will be presented. From October 5th, the four episodes will also be available that tell the story of Michela, a 14-year-old girl who discovers that she suffers from rheumatoid arthritis and who sees her dream of competing in running in various cities around the world faded, starting from her favorite , New York . Finally, on October 11th, the artistic performance Leggiadria del Movimento will be held in Piazzale Flaminio in Rome. Info: apmarr.it.
October 2, 2023 (modified October 2, 2023 | 07:53)
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