8 Chapter 1 Patient-centered care Patient-centered care1 (PCC), also referred to as person-centered care, is defined by the Institute of Medicine [1] as “providing care that is respectful of and responsive to individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions”. This approach puts the patient (and not the disease) at the center of health care and encourages a collaboration between patient, family, and clinicians to deliver care tailored to the unique wishes and needs of patients [2,3]. Although different models of PCC exist [1-4], the New England Journal of Medicine (NEJM) Catalyst [2] describes seven common elements of PCC: 1) The health care system’s mission, vision, and drivers for quality improvement are aligned with patient-centered goals. 2) Care is collaborative, coordinated, and accessible. The right care is provided at the right time and place. 3) Care is not only focused at physical comfort, but also on emotional well-being. 4) Care is respectful to patients’ and families preferences and values. 5) Patients and families are part of the care team and play a role in the decision making at both patient and system level. 6) Involvement of family in the health care is encouraged and facilitated. 7) Information is shared with patients and families so that they can make informed decisions. The most important reason for providing PCC is the improvement of individual health outcomes (i.e., medical outcomes, social well-being, and satisfaction with care) [2,5,6]. However, clinicians and health care organizations may also benefit from this approach as it results in enhanced patient satisfaction, greater job satisfaction, better productivity, and a reduction of health care costs (e.g., PCC is associated with a reduction of diagnostic tests and referrals) [2,5-8]. Despite the benefits of PCC, its implementation is challenging, as it calls for a different way of thinking about health care delivery and a changing role of patients and families, i.e., transitioning from a more passive role to an active member of the team [2,3]. This thesis focuses on the development of tools and scientific approaches on how to engage children and families in pediatric care, specifically (Figure 1): 1 In this thesis the term patient-centered care is used. However, we recognize that this term is broader in pediatrics and also means the engagement of parents and other family members.
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