Abstract
Paediatric chronic diseases (CD) are characterised by their ongoing duration and the fact that they are often managed throughout the lifespan, with the need to adjust lifestyle and expectations with the limitations coming from the CD. The aim of the PENSAMI study is to not only cure the disease, but to also care for the person from a clinical and psychosocial perspective. Data will be collected from 150 paediatric patients affected by heart disease, diabetes, and asthma admitted during in-hospital stay or outpatient visits, and from 200 healthy control subjects. The protocol will consist of two phases. The first one will aim at elaborating the predictive model by detecting (clinical, anthropometric at birth, environmental, lifestyle, social context, emotional state, and mental abilities) in order to develop a model predictive of the events considered: (1) re-hospitalisation; (2) severity and progression of the disease; (3) adherence to therapy; (4) HRQoL; (5) obesity and metabolic syndrome; (6) illness-stress related; (7) school drop-out; (8) school performance. The second one will address validating the previous predictive model. This model will aim to: (1) understand, prevent, and halt the progression of childhood CD; (2) develop new and improved diagnostic tools; (3) pave the way for innovative treatments and additional therapies to traditional clinical practice; and (4) create truly personalised therapeutic and preventive strategies in various sectors, such as cardiology, diabetes, and respiratory diseases.
Highlights
Chronic diseases are characterised by their ongoing duration and the fact that they are often managed throughout the lifespan [1]
The PENSAMI approach is based on a perspective that an integrated and multidimensional health framework, including clinical, lifestyle, psychosocial, and environmental determinants, is effective in more accurately stratifying patients with a higher probability of events, and improving the quality of life of paediatric patients with chronic diseases
The PENSAMI concept is in line with the definition of precision medicine, that is an emerging approach for prevention, diagnosis, and cure of diseases that takes into account subjective changes in genetic, environmental, and lifestyle assets
Summary
Chronic diseases are characterised by their ongoing duration and the fact that they are often managed throughout the lifespan [1]. The spectrum of risk factors ranges from purely genetic to behavioural, psychosocial, and environmental ones, creating an integrated and complex causal pathway to consider when applying preventive strategies to improve health and well-being In this process of evolution, different disease conditions share common pathophysiological mechanisms, such as the activation of hormonal, inflammatory, and nervous systems that are initially protective, but become potentially harmful when continuously activated [3]. The inclusion of variables associated with health-related quality of life within a multidimensional approach in clinical decision making is useful for both managing symptoms and improving psychosocial care [18,19,20] To solve this problem, a new framework is urgently needed to manage clinical parameters, and the impact that the disease may have on the socialisation process, emotional health, and general limitations in ordinary activities, with particular focus to the paediatric context [21,22]
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