Identifying sources of patient dissatisfaction when seeking care for a chronic and complex disease

Abstract

Patients’ evaluations of healthcare often rely on patient satisfaction and encounter-specific approaches. Instead, valuable information can be gained by focusing on patient dissatisfaction with healthcare over time. This study examined patients’ sources of care dissatisfaction when seeking healthcare for a long-term chronic and complex disease (CCD). Participants with a CCD called polycystic kidney disease (N=387) completed an online questionnaire with an open-ended question about dissatisfying experiences. Content analysis was used to analyze responses. The coded data resulted in conceptual codes related to dissatisfaction with information, support, and care management. Analysis revealed the type of healthcare provider is often mentioned, and that more than one type of dissatisfaction can occur at the same time. Patients with CCDs are experiencing a variety of types of dissatisfaction when seeking healthcare, which may point to ongoing communication gaps between patients and the healthcare providers they see over time for their disease. Providers who see patients with CCDs should remember these patients may see multiple providers over time and have unique support needs. Providers can potentially improve care experiences by helping patients manage their care across both providers and experiences, as well as encourage patients to ask questions and express their concerns.