Quality of Care and Quality of Life: Patient/Healthcare Perspectives

Abstract

Background: Patients with CF need attention, financial resources and energy for their daily, time consuming therapies to maintain an optimal health status. Our goal as healthcare providers (HP) is to offer the best care. This results in a heavy burden for the patients which impairs the quality of life (QoL) and may lead to poor adherence. The ultimate goal should be to propose a true balance between quality of care (QoC) and QoL. The QoC in CF is measured by outcome variables that include morbidity, mortality, FEV1 and BMI. Over the last decade, the patient’s perspective on QoL was included as well. Patients grade the effect of the disease on their daily life, and include their subjective assessment of respiratory status, physical activity, eating, body image, social status and the emotional effects of CF. Aim: To investigate the differences in perception of quality of life and quality of care between HP and patients/parents in our CF center. Method: QoL and QoC were assessed by an anonymous questionnaire that included 46 questions, completed by 13 HP, 24 patients >18 years and 29 parents of children <18 years. Results: No significant differences between the perceptions of HP and the patients on QoC were detected. Significant differences were observed in QoL, i.e., subjective perception, daily activities, treatment burden and coping. Despite the original assumption that patients perceived their QoL much lower than expected by the HP, this study showed the opposite. Conclusions: Patients and parents perceive the chronic illness in a “healthier” light than the medical staff. Therefore healthcare providers should take the patient’s perception into consideration and recommend the best care when developing treatment regimens.