Exploring patient experiences of illness and diagnostic pathways in self-reported Q fever cases

Introduction: Q fever is an underestimated zoonotic disease with serious human health implications. This study explores patient experiences to characterize the impact of illness on quality of life, the pathway to diagnosis, and satisfaction with healthcare. Methods: An online survey was conducted to gather self-reported cases of Q fever, and follow-up interviews were carried out with consenting survey participants to represent a range of experiences related to diagnosis and illness severity. Quantitative data were analyzed descriptively, and thematic analysis was performed on qualitative data. Results: Quality of life was severely affected in 74% of patients, with many requiring hospitalization (48%) and taking time off work or school (87%). While some participants reported being unwell for over 10 years, the majority seem to recover within 6 months. Diagnosis was delayed for several participants, many of whom had multiple medical visits (>10) and were ill for years before receiving a medical diagnosis. The majority of diagnoses were made by general practitioners, whose knowledge of Q fever was an important factor in achieving timely diagnosis. The majority of participants reported being exposed to livestock around the time they likely contracted the illness. Six main themes were derived from the interviews: experience of physical illness, impact on life, emotional experience, managing and surviving Q fever, experience with the medical process, and importance of awareness. Conclusion: Q fever has the potential to cause severe and life-changing consequences. Obtaining a timely diagnosis can be difficult, and many patients reported dissatisfaction with the quality of their healthcare. Adopting a model of patient-centered care and increasing awareness of Q fever could improve health outcomes and provide better support for affected patients.