Experiences and perceptions of chronic kidney disease among adults with CKD and primary care physicians: a qualitative descriptive study

Chronic kidney disease (CKD) is characterised by the progressive loss of renal function and represents a major public health problem due to its significant impact on morbidity, mortality, and quality of life. The main objective of this study was to explore the experiences, perceptions, attitudes and management of CKD among adults living with the condition and primary care physicians working in primary care centres across Spain. A qualitative descriptive study was conducted using focus groups and semi-structured interviews. Data were analysed inductively using thematic analysis. We held five focus groups with primary care physicians from across Spain (14 women and 7 men), with between 2 and 40 years of professional experience. Furthermore, we conducted 12 semi-structured interviews with adults diagnosed with CKD (8 men and 4 women), aged between 36 and 80 years. The main themes emerging from primary care physicians were: (1) the perception of CKD as a silent disease that many adults consider to be mild; (2) key barriers and strategies related to the processes of detection, diagnosis, management and follow-up; (3) barriers to coordination with other professionals and healthcare services; and (4) proposals for improvement. The main themes emerging from adults with CKD were: (1) experiences and emotional impact of the disease depending on the presence of symptoms and the need for treatment; (2) the relationship between lack of information about the disease and perceived severity; (3) the importance of adults’ ability to engage in self-care throughout the course of the disease; (4) relationships with healthcare professionals; and (5) proposals for improvement. CKD remains an underdiagnosed and under-recognised condition. Its asymptomatic nature hampers both early detection and adherence to treatment. Limited information for adults with CKD, together with the lack of protocols, workload pressures, social and organisational factors and territorial differences were perceived as barriers that hinder effective management and highlight the need for further research.