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Care for children with severe chronic skin diseases
Hannelore De Maeseneer1, Dirk Van Gysel1, Sofie De Schepper2
1Department of Pediatrics, O.L.Vrouw Hospital, Aalst, Belgium.
Insights
Children with severe chronic skin disease adapt well, but their parents desire a more holistic, multidisciplinary approach to care. This study highlights needs for personalized, lifelong support for pediatric dermatology patients.
Area of Science:
- Pediatric Dermatology
- Chronic Disease Management
- Healthcare Quality Improvement
Background:
- Severe chronic skin disorders significantly impact children and their families.
- Expert centers strive to optimize care through multidisciplinary approaches.
- Existing literature lacks detailed requirements for optimal pediatric chronic skin disorder care.
Purpose of the Study:
- To evaluate current care for children with severe chronic skin disease at a national expert center.
- To identify patient and parent needs for optimal care approaches.
- To assess the effectiveness of existing care strategies.
Main Methods:
- Utilized existing questionnaires for pediatric patients (modified "my positive health") and parents (Pelentsov parental needs scale).
- Conducted structured interviews with parents and young adult patients to define optimal care.
- Gathered insights from 19 healthcare professionals through open-ended questionnaires.
Main Results:
- Pediatric patients demonstrated high self-management and adaptation skills, with "quality of life" as their highest-scoring dimension.
- Parents emphasized the need for healthcare professionals to adopt a more holistic, life-long approach.
- Professionals identified a holistic, multidisciplinary approach as the primary improvement for better care.
Conclusions:
- Children with severe chronic skin disorders show resilience and self-management capabilities.
- There is a clear need for a personalized, integrative, multidisciplinary, and systematic transmural approach.
- Care should comprehensively address all life aspects throughout the patient's lifetime.
Abstract:
In this study, the care for children with a severe chronic skin disease in our national expert center of pediatric dermatology was evaluated. Patients and their parents were questioned by using existing questionnaires: 50 pediatric patients completed the modified "my positive health" questionnaire of Huber and 51 parents completed Pelentsov parental needs scale. Nineteen involved professionals answered a questionnaire with open boxes. Parents of children with a variety of chronic skin diseases and young adult patients were interviewed to find out what an optimal approach would look like according to them. Children with a severe chronic and/or congenital skin disorder score high on the "my positive health" questionnaire, indicating they are able to adapt and self-manage. Their highest median score was measured for the dimension "quality of life." Their parents expect improvement of "working with health care professionals," more specifically they want them to adopt a more holistic approach throughout the patient's life. Structured interviews showed they expect that a multidisciplinary team of care providers determine together with the patient and its family-in advance-which care is needed, at what time and by whom. The interviewed professionals indicated adoption of a holistic multidisciplinary approach as the single largest improvement to achieve better care.Conclusion: Although these children with a severe chronic and/or congenital skin disease were able to adapt and self-manage, they need a more personalized integrative multidisciplinary and systematic transmural approach covering all aspects of life during their lifetime. What is Known: • Severe skin disorders affect the child and its family in several ways. In our expert center, we try to optimize the care for these children through a multidisciplinary approach. What is New: • To our knowledge, no English publication describes the requirements for good care for pediatric patients with severe chronic skin disorders and how to optimize this care. We evaluated the health status of children with severe chronic skin disorders and the strengths and weaknesses of past and current care by questioning these children, their parents, adult patients, and involved professionals.
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