The Lower Silesian Voivodeship self-government is launching the Health Policy Program for the early detection of developmental defects in newborns and infants—improving perinatal care across the Lower Silesian Voivodeship for 2023–2025. The Office:
PLN 3 million from the voivodeship budget will be allocated to its implementation. The program’s provider, selected through a competition, is the Jan Mikulicz-Radecki University Clinical Hospital in Wrocław. The program aims to provide targeted diagnostics and therapy for children born with congenital developmental disorders or suspected of having such a disorder. The entire care process will be carefully coordinated to provide support and treatment in the best possible way. A total of 3,000 newborns and infants and their families will be included in the program (2023–2025).
– We want to develop perinatal care across Lower Silesia. We want to make it possible to diagnose developmental defects and rare diseases. As part of the program, we also want to shorten the path from diagnosis to treatment. This is extremely important for parents of children with rare diseases; it is what they need – says Marcin Krzyżanowski, Deputy Marshal of the Lower Silesian Voivodeship.
– In accordance with the program’s assumptions, newborns and infants with a developmental defect or suspected developmental disorder, born in 2022–2025 and residing in the Lower Silesian Voivodeship, will be covered by the program, provided that their parents or legal guardians consent to their inclusion – informs Prof. dr hab. n. med. Robert Śmigiel, the program coordinator and head of the Department of Pediatrics, Endocrinology, Diabetology and Metabolic Diseases at the University Clinical Hospital in Wrocław.
The program’s most important objective is to bring about a real improvement in perinatal care across the voivodeship. Key elements of the project are intended to provide comprehensive support for the entire family, which, thanks to the program’s assumptions, will be able to undergo the initial diagnostic and therapeutic process “in one place,” particularly in the following areas:
- early detection of developmental defects and disorders in newborns and infants,
- the introduction of comprehensive and coordinated care (through medical consultations),
- holistic care including psychological support for the patient’s entire family, as well as formal and logistical support for the parents of a child with a developmental defect during the child’s first period of life.
Officials: – Congenital developmental disorders in children (developmental defects, dysfunction of individual organs, neurodevelopmental disorders, congenital metabolic defects) include any anatomical or functional abnormality present at birth, although it does not always become apparent or diagnosable during the neonatal period.
They add:
About 80% of rare diseases have a genetic basis; the remaining 20% may be associated with infectious or immune diseases or environmental factors. Rare diseases are diagnosed with considerable delay and are associated with limited access to diagnostic tests and specialists, particularly those grouped in one place (coordinated care), the lack of causal treatment (95% of rare diseases), and, where targeted treatment does exist (about 5% of rare diseases), very costly therapy.
– Moreover, one in ten children is born prematurely today. The birth of a premature infant most often involves many months or even years of specialist care and rehabilitation. Premature infants need care from many specialists to make up developmental differences – explains Prof. Barbara Królak-Olejnik, head of the Department of Neonatology at the University Clinical Hospital in Wrocław.
– Congenital defects affecting one system, such as the urinary system, are associated with the occurrence of congenital defects in other systems and organs – explains Prof. dr hab. n. med. Katarzyna Kiliś-Pstrusińska, head of the Department of Pediatric Nephrology at the University Clinical Hospital in Wrocław. – Multimorbidity affects many areas of a child’s life and, inseparably, the life of the entire family, leading to a lower quality of life. Early diagnosis and comprehensive care make it possible to rationalize treatment and create a chance to improve the child’s health and the family’s situation not only during childhood but also to support better functioning in the future.
The pillars of assistance for patients with congenital developmental disorders are appropriate diagnostic management, coordinated medical care, and psychological and paramedical support for the family.
– I am very pleased that our hospital has been selected to implement the health policy program for the early detection of developmental defects in newborns and infants, because the University Clinical Hospital in Wrocław has a qualified team of pediatric specialists in many fields, thereby providing comprehensive healthcare – emphasizes Marcin Drozd, director of the University Clinical Hospital in Wrocław. – This will allow the program’s objectives to be implemented at the highest level and provide support from world-class specialists in diagnosing and determining therapy as part of coordinated care for a child with a developmental defect, as well as support for the child’s family.
How will the program be implemented?
UMWD:
The perinatal care improvement program includes a specialist consultation, which will conclude with the issuing of a Patient Passport—a document containing a description of the child’s condition and diagnostic and therapeutic recommendations. Individual consultations and selected specialist examinations may also be carried out as part of the project. The program provides a consultation with a psychologist for families requiring particular support.
It also adds:
The project also envisages extensive educational activities—for specialists, families of young patients, and society.
Patient referrals to the program will be accepted by telephone at 885 853 127 (contact with the program coordinator) or by email at koordynator.program@usk.wroc.pl, in accordance with the inclusion criteria. The person referring the patient to the program must provide the patient’s medical records after the patient’s parents or guardians have given written consent. Patients may be referred to the program by a hospital ward physician, outpatient clinic physician, community nurse, physiotherapist, speech therapist, or parents. The chair and permanent physician members of the consultation panel are responsible for the substantive qualification of patients for the program.