Background: It is well acknowledged that clear, structured healthcare services that are mutually developed between the patient and the healthcare professionals are likely to be of high quality, desirable, and effective. Such service should address the complexity of the illness-health experience in terms of the factors that influence it as well as the physical and psychosocial consequences on the patient. The required focus should be on treating the patient rather than just treating the disease.Objectives: To develop relevant and feasible care guidelines that may inform more competent and patient centered services for adolescents and young adults with chronic conditions.Methodology: A sequential exploratory mixed method design guided this study. The first qualitative phase employed in-depth interviews to explore the experiences of adolescents and young adults about the health services they were receiving. This was followed by focus group interviews with healthcare professionals to discuss the patients’ reported needs and to suggest interventions that would address them. Finally, a second quantitative phase was carried out through a survey to explore the views of a larger sample of service stakeholders about the relevance and feasibility of the suggested guidelines for clinical practice.Results: The in-depth interviews revealed four main themes, as follows: a current amorphous service, sharing knowledge, the need to be at the center of service, and easing the transition process to adulthood. The second study phase yielded 32 proposed guidelines that may contribute to more competent and patient centered health care.
Patient-centered research to inform patient-centered care for adolescents and young adults (AYAs) with cancer
