Patients with SIC ask SUS to offer home care – 10/31/2023 – Health

It was with Cecília’s photo in their hands that Beatriz Gonçalves Pereira and her husband went to the Municipal Health Department and Curitiba City Hall a few times. At the time, her daughter was six months old and the image was a way of raising awareness among authorities about the need to provide home care.

Cecília was diagnosed with volvulus – when the intestine turns around itself, interrupting blood flow – when she was ten days old. She underwent four surgeries and was left with just 30 cm of small intestine, creating what doctors call SBS (short bowel syndrome). In this situation, the digestive system does not have the capacity to absorb the necessary nutrients and the patient needs parenteral nutrition, administered intravenously.

In parenteral nutrition, a catheter is installed and, through it, the patient receives a formula composed of glucose, lipids, amino acids, electrolytes, vitamins and minerals. Many health plans offer home care for users who need this type of attention, but in the SUS (Unified Health System) intestinal rehabilitation centers with home care are rare.

Cecília’s parents filed a lawsuit in July 2022 and, in September, the girl was discharged with the support she needed. The SUS provided a technician and a nurse who went to the family’s home at 8 pm to start the nutrition, and at 8 am to finish it, and she spent the night receiving the formula.

“While she was hospitalized, she had more than 15 infections. Since coming home, there have been three episodes of contamination”, compares the mother. “This home care is essential.”

Like most patients, Cecília has rehabilitated her intestine and will no longer need parenteral nutrition. For Beatriz, the rapid evolution is linked to home care.

Kalyne Ribeiro Torreão also had to take action, but to guarantee care for her five-month-old son at a reference center. Bernardo was hospitalized in João Pessoa and his condition was not improving. In two months of parenteral nutrition, there were eight infections. Even so, he was 33^O on the waiting list for care at a specialized location.

She says that the family asked for a quote from a hospital in São Paulo and the cost of care, for a period of six months, was R$1.9 million. The state of Paraíba, however, managed to find a place at Hospital Pequeno Príncipe, in Curitiba. Bernardo gained weight, was able to switch from parenteral nutrition to enteral nutrition (administered through a tube that is connected to the stomach or intestine) and was discharged within 45 days.

“When we returned to João Pessoa, he was still 11^O queue”, says Kalyne. “Demand is very high and there are few specialized services.”

According to Tadeu Thomé, coordinator of the Transplantar project, at Hospital Sírio-Libanês, the demand for intestinal rehabilitation in the country should be even greater. Considering the average incidence of intestinal failure in other countries, Brazil would have between 400 and 600 pediatric cases per year, but many patients are not diagnosed or die waiting for treatment.

At Transplantar, says Thomé, there is always a waiting list. The initiative is part of Proadi (SUS Institutional Development Support Program), a model in which reference hospitals receive resources from the Ministry of Health to share expertise with the public network. In the case of Sírio, the partnership is with the Menino Jesus Municipal Children’s Hospital, in São Paulo.

The program began in 2016 and, since then, has served 97 children. Of these, 43 remain in home treatment. They receive daily prepared nutrition bags and a visit from a nurse who monitors the facility. Furthermore, the family receives training to identify signs of infection early and there is multidisciplinary monitoring.

Menino Jesus and HCPA (Hospital de Clínicas de Porto Alegre) are the only ones in the public system that offer home care for children with intestinal failure.

In the capital of Rio Grande do Sul, Prica (Intestinal Rehabilitation Program for Children and Adolescents) was started in 2014, as a project to test the technical feasibility of offering home care through the SUS.

Through the model, contracts are signed with companies responsible for producing and delivering the bags and a partnership is established with nurses from the patient’s city of origin, which allows services not only in Rio Grande do Sul. Currently, the project also has children being monitored in Paraná and Santa Catarina.

With more than 80 patients treated, Prica coordinator, Helena Goldani, has no doubt that it is possible to expand the format. “We are finishing a survey of the prevalence of pediatric patients with short intestine in Brazil, to understand how many there are and where they are, and from this we hope that the Ministry of Health decides to open new centers.”

In addition to socialization, family reintegration and improved quality of life, the pediatric gastrologist highlights that home parenteral nutrition reduces hospitalization costs.

The financial impact is one of the arguments used by Weverton Gomes to defend the maintenance of the home intestinal rehabilitation program at the Hospital das Clínicas of the Faculty of Medicine of USP, the only one in the country aimed at adults.

At the beginning of the year, he and other patients took to social media and reached out to the press to share their fear that the program would be closed. In this case, everyone would have to remain admitted to the hospital. “Many people work, have children and we lose all of this without home care,” he says.

Weverton was diagnosed with appendicitis in 2015. After surgery to remove the appendix, he began to experience intestinal swelling, bleeding and vomiting. Upon returning to the operating room, doctors discovered that 90% of his small intestine had necrotized.

After a crowdfunding campaign, he underwent an intestine transplant in the United States, but it was rejected. “I’m from Pernambuco and, after I lost the organ, I had to stay here in São Paulo because home parenteral treatment is only available here.”

Once a week he goes to the hospital to change the catheter dressing and, once a month, he has consultations with nutritionists and nutritionists to weigh in and make possible adjustments to the formula. He is also monitored by an endocrinologist and gastroenterologist.

“I do 16 hours of nutrition a day, so I have a period of eight hours free,” says the 26-year-old, who with the help of technology manages to maintain his remote work routine. “I have a fiancée and she’s from my city. She comes here, spends a few days and then we’re away for months. I hope to get married and bring her here because it’s difficult, the distance hurts.”

In a note, HCFMUSP states that the program, funded by an agreement with the Ministry of Health, was extended for another year and that the 14 benefited patients are still being monitored.

Next steps

The need to expand services faces some difficulties. One of them is the lack of protocols for short bowel syndrome and intestinal rehabilitation, mentions Sandra Fernandes, director of Abran (Brazilian Association of Nutrology). On November 21st, a hearing will take place in the Chamber of Deputies precisely to discuss support for patients with SBS.

Another obstacle was the lack of regulation, by Cofen (Federal Nursing Council), for training families of children and adolescents with home parenteral nutrition. But recently the entity issued a favorable opinion on the training.

Sharing knowledge is essential to minimize risks. “It is a very invasive procedure because there is necessarily a catheter placed in a deep venous access. If there is no hygiene process, there is a great risk of infection, thrombosis”, explains Sérgio Henrique Loss, nutritionist at Hospital Moinhos de Vento.

Furthermore, there needs to be a multidisciplinary team to monitor patients and ensure that the formula will be correctly produced and delivered.

The Ministry of Health states that it has prepared a proposal to reinforce home care for intestinal rehabilitation in the SUS, in order to strengthen and ensure access to assistance and adequate treatment in the public network. The ministry says that the plan should be submitted to municipal and state managers in the coming weeks.