The Path of Trust and Hope

Amount:     39.523 euros – 2019

                       17.982 euros – 2018

Implementing period: Ongoing since March, 2018

Partners: Constanta Clinical County Hospital

“Circuitul Încrederii și Speranței” – The Path of Trust and Hope is a project in which joint teams of Daruiește Aripi and medical staff of the pediatric onco-hematology ward from the Constanța County Emergency Clinical Hospital travel to the homes of children with severe chronic conditions in Dobrogea for clinical procedures that can be performed safely at home, thus reducing the number of trips to the hospital that the children have to take, in order to receive their treatments.

The aim of the project is to increase the access to free medical services for children with severe chronic conditions from underprivileged rural areas by organizing a pilot model of home treatment and monitoring services coordinated by their attending physician.

What are the needs responded by the project?

Pediatric cancer is a disease that requires an average of two years of specialized treatment in successive therapies and then, for survivors, close follow up for the rest of their lives. Unfortunately, once out of the perimeter of pediatric onco-hematology wards, patients and families face the total lack of expertise and availability of local medical services for monitoring, solving of occurent health problems or for the terminal care of hopeless cases.

The little patients are forced to countless journeys, even for hundreds of kilometers, to the Pediatric Oncology wards where they are treated, which involve heavy financial burden for the family, psychological stress for children and their exposure to risks (especially infectious). Loss to follow-up is a big problem in Romanian pediatric oncology, where no clinic has active follow-up procedures to this purpose. The “Path of Trust and Hope (CIS)” project was initiated by the Daruieste Aripi Association to cover this “hiatus” and offers a model of proximity care that shifts the focus from the Hospital to the Patient and the Community.

The innovative vision of the project, to create a continuum of care for children with cancer and other severe illnesses, wherever they are and whenever they need it, during the evolution of the disease, is today validated by international expert fora (SIOP) in the context of the COVID-19 pandemic, as an urgent need to provide community alternatives to hospitalization for safe health care.

What we do:

We support pediatric oncology specialists from the Pediatric Oncology Ward in Constanta to extend the supervision area for the children in their care, by traveling to their homes for permanent monitoring and clinical procedures that can be safely performed at home.

The project implies:

1. Constant monitoring and evaluation of the medical status of children in care, according to protocols established by doctors;

2. Providing treatments;

3. Blood drawing;

4. Pain therapy and home care for terminally ill children;

5. Counselling and educating parents and families in caring for children with serious conditions;

6. Creating working procedures for the multidisciplinary boards necessary for young patient’s evaluation;

7. Identifying social cases (especially extreme poverty situations) and involvement in solving these cases.

JUST A FEW RESULTS (March, 2018 – April, 2020)

• 265 children with severe chronic diseases from the South-East region of Romania and their families directly benefited from free medical monitoring and support services at home;

• 425 free medical consultations at home;

• 2008 medical tests collected;

• 27695 km traveled;

• 255 trips and hospital admissions, avoided;

Indirect beneficiaries are also:

• The over 500 children treated at the onco-hematology ward of Constanta County Emergency Hospital who benefit from more resources, reduced waiting time and increased attention from the medical staff, while relieving the ward from the numerous hospital admissions, replaced now by home visits.

• the ward’s medical staff that has acquired new experience, knowledge and forefront practices in the Romanian medical system.

• last but not least, the pediatric oncology care system in Romania, is provided with the opportunity to replicate and expand an innovative model of organizing patient-centered services, with a potential to generate national standards for the case management of the chronically ill child and for the care of survivors.

• current and future patients from the population aged 0 to 18 with 39 different pathologies (malignant and non-malignant) – for which a model of proximity specific medical services will be available outside the hospital, in the community.

IMPACT

● 0 cases lost to follow-up or with treatment abandonment (a major problem in pediatric oncology);

● Increased adherence to recommendations and correct family care skills. Elimination of a significant financial burden associated with hospital trips from the shoulders of families;

● Increasing the quality of life of children under treatment and survivors (lifestyle counseling, financial and in-kind help for cases of extreme social deprivation), emotional support and psychological comfort (they are cared for by the medical staff they already accustomed to, from the hospital);

● Palliative care, offered at home for terminal patients (only 9% of these needs are covered in Romania);

● Development of a new paradigm in the care of children with severe chronically illness through specialized services offered in the community / home, now urgently needed in the context of the challenges brought by COVID-19 to traditional hospital-based healthcare models;

● Development of procedures and protocols for the follow-up of pediatric cancer patients – the premise of developing a long-term survival monitoring system and an essential element in re-configuring the pediatric oncology network, according to European standards;

● Development of multidisciplinary cooperation and case management skills in pediatric oncology (a stringent need, but completely nonexistent in Romania).

What next

We are committed to take this model to the next level, so that it covers a wider range of needs, at the highest standards, expanding to a larger geographical area (the regions in the southern half of the country), with the participation of several pediatric oncology centers in the country.

To us, the next level means the development and endorsement of this model as an optimal alternative to conventional hospital care, safely covering many of the specific care needs of children with cancer (intra – / – post – therapeutic monitoring, administration of therapies, nursing, palliative care, etc.)

Last but not least, this model will create a network of outreach resources for the long-term monitoring and support of pediatric cancer survivors and children / young adults with other critical illnesses.

The project was initiated in March 2018, with funding support from the “Adopt a project” program of ING Bank Romania.

Synevo Romania supports the project by covering the costs of medical analysis/ tests, collected in this program.

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