RESUMEN
Introduction: Epilepsy is a neurological disease that can negatively impact a person's physical, psychological, social, and emotional well-being. The aim of this study was to provide insights into the experiences of people with epilepsy on polytherapy (i.e., people on a combination of two or more anti-seizure medications [ASMs]), with an emphasis on their emotional journey. Methods: Market research was conducted with 40 people with epilepsy from France, Germany, Italy, Spain, and the United Kingdom. Semi-structured interviews were analyzed using both a content and framework analysis approach. A content analysis of participants' expressed emotions was used to illustrate the changes of emotions experienced by people with epilepsy from presentation through to monitoring and follow-up stages. Results: In each stage of the journey, themes and subthemes were identified under the overarching headings: Stage 1: Presentation - Life is turned upside down; Stage 2: Diagnosis - Period of learning; Stage 3: Treatment - Aspirations and experimentation; and Stage 4: Monitoring and follow-up - Feeling "out on a limb". The research identified key unmet needs and opportunities for people with epilepsy to improve their subjective experiences at different stages of their disease journey, namely: (1) establish and promote support networks from presentation through to monitoring and follow-up stages; (2) accelerate pathway to diagnosis; (3) provide opportunities to discuss the diagnosis with patients; (4) clarify treatment-change guidelines for patients; and (5) develop a shared treatment decision-making/empowerment tool. Discussion: The research findings and recommendations have the potential to drive change at an individual level, as well as at a healthcare level.
RESUMEN
An expert advisory board discussed the prevention and treatment of chronic kidney disease (CKD), with a focus on dietary options. This is timely, given the uptake of value based models for kidney care in the United States. Timing of dialysis start is influenced by patients' clinical status and complex patient-clinician interactions. Patients value personal freedom and quality of life and may want to delay dialysis, whilst physicians are sometimes more concerned with clinical outcomes. Kidney-preserving therapy can prolong the dialysis-free period and preserve residual kidney function, thus patients are asked to adjust their lifestyle and diet, to follow a low- or very low-protein diet, with or without ketoacid analogues. Multi-modal approaches include pharmacotherapies, management of symptoms, and a gradual, individualized dialysis transition. Patient empowerment is vital, including CKD education and involvement in decision making. These ideas may help patients, their families, and clinical teams to improve the management of CKD.