2023-11-25 18:15:29
by Maria Giovanna Faiella
For approximately 800 patients (150 children), home parenteral nutrition was a life-saving therapy. But not guaranteed in a homogeneous way throughout the national territory. The pathology is not yet recognized as rare by the Health Service
For those suffering from chronic benign intestinal failure (IICB) and short bowel syndrome, home parenteral nutrition is a real life-saving therapy, yet it is not guaranteed homogeneously in all regions as the disease has not yet been included in the list of rare diseases within the LEAs, the essential levels of assistance. A lack of recognition that weighs on the health and lives of these invisible patients (around 800 Italians, of which 150 children), starting from the diagnosis which often arrives late, to the failure to take care, up to the need to move outside the Region to receive the necessary assistance. what emerges from a survey on the unmet needs of patients, promoted by A Thread for Life non-profit organization and presented during a conference in Bari organized by the Association in collaboration with the complex Gastroenterology operational unit of the “Dimiccoli” Barletta Hospital, NAD (Home Artificial Nutrition) reference center for the Puglia Region.
The disease and life-saving therapy
Chronic benign intestinal failure (indicates absence of malignant tumor ed.), one of the rarest organ failures, occurs when the intestine is no longer able to carry out its primary function, that is, nourish the body. If not adequately treated, it can lead to death due to wasting.
Home parenteral nutrition (NPD) is a life-saving treatment because it replaces lost organ function, much like dialysis for chronic kidney disease.
However, as the Filo per vita association reports, since chronic benign intestinal insufficiency is not yet recognized as a rare disease within the Lea, the essential levels of assistance that must be guaranteed throughout the national territory, the treatment is often authorised, for the individual patient, based on personal decisions.
The investigation: access to therapy and costs borne by patients
But how does one access parenteral nutrition at home? From the survey promoted by Un Filo per la Vita, which involved approximately 300 patients, it emerges that the therapy (provided by the Health Service) was provided in approximately 84 percent of cases by a pharmaceutical company and in approximately 13 percent of cases from the hospital, through the provision of home aids and training for their use carried out mainly by nurses.
Two out of three patients and caregivers report having needed psychological support, but have had to pay for it out of pocket.
In 70 percent of cases, a caregiver (parents or others) is responsible for managing the home parenteral nutrition that the patient must provide. For more than one patient in two (56%) the pathology has a significant impact on personal and family organization on an economic level.
And patients who are not entitled to exemption (recognised for rare diseases) pay the cost of medicines, specialist visits, diagnostic tests, as well as paying out of pocket for vitamins, food supplements, necessary over-the-counter medicines and private specialist visits (if the wait in the public is long).
Delayed diagnosis and poor management
The survey, then, highlights that the problems for patients begin at the moment of diagnosis, which often arrives late due above all to the underestimation of the symptoms, the lack of knowledge of the pathology with the prescription of inadequate tests and the difficulty in finding the Reference center for the disease (one family doctor in two cannot indicate it).
Being taken care of, through appropriate diagnostic-therapeutic pathways, can make the difference between life and death. The survey shows that there are virtuous experiences underway in some Regions (for example: Piedmont, Emilia Romagna, Puglia, Lazio, Tuscany). In too many cases, however, the disease is not taken care of promptly by the reference centre, which leads to an increased risk of complications, less success in the rehabilitation of intestinal function, worsening of the quality of life, and therefore even greater disabilities. costs for the National Health Service.
To get treatment you need to go outside the Region
Patients and their families report that there are few reference centers specialized in IICB, so they are forced to move to other regions, both for emergencies and for ordinary visits, with the consequent consequences in terms of school and work days lost, economic costs etc.
The center or service dedicated to IICB, at second or third level, still remains the point of reference in care for the majority of patients, also because, as the survey indicates, the territory is not able to fill the needs for care and of taking charge. And, according to patients and caregivers, there is a lack of integration between primary care and specialist medicine, with doctors not speaking to each other.
The young patients grow up, therefore in the adolescence phase the transition from the pediatric reference center to the adult center occurs. From the experiences collected, the lack of continuous management of patient care in the transition from the pediatric to the adult phase emerges.
Patient requests
For years, patients have been asking for IICB and short bowel syndrome to be recognized as a rare disease, which has not yet happened despite many (unfulfilled) promises.
The president of Un Filo per la Vita, Sergio Felicioni, summarizes: We ask for few but stringent actions to be implemented to facilitate all people with IICB and short bowel syndrome: inclusion in the national list of rare diseases; homogeneity of patient care and appropriate therapeutic pathways across the entire territory; support for family caregivers; improve the process of recognizing civil disability.
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November 25, 2023 (modified November 25, 2023 | 5:15 pm)
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