Development of a conceptual model of BKV impacts on health-related quality of life in kidney transplant recipients: a qualitative study

Abstract Background BK virus (BKV) is a common latent virus that can reactivate in kidney transplant recipients due to immunosuppressive therapy, potentially leading to graft dysfunction or loss. While clinical management of BKV is well studied, little is known about its broader impact on patients’ daily lives and well-being. No conceptual model currently exists to describe the health-related quality of life (HRQoL) impacts of BKV from the patient perspective. Methods We conducted a qualitative study using semi-structured concept elicitation interviews with 12 adult kidney transplant recipients who had experienced BKV reactivation. Participants were recruited using purposive sampling to ensure diversity in demographics and clinical experiences. Interviews were transcribed and analyzed using thematic analysis with iterative coding, saturation tracking, and structured impact prioritization to develop a conceptual model of BKV-related HRQoL impacts. Results Participants described a range of psychosocial and practical challenges associated with BKV, despite the virus often being asymptomatic. Key themes included emotional distress, fear of graft loss, confusion about treatment, disruption to work and daily routines, and increased burden of care coordination. Many participants reported feeling unprepared and unsupported, often needing to advocate for themselves within the healthcare system. These experiences were synthesized into a conceptual model illustrating the multidimensional impact of BKV on HRQoL. Conclusions This study presents the first patient-informed conceptual model of BKV-related HRQoL impacts in kidney transplant recipients. Findings highlight the need for improved patient education, communication, and support strategies. The model provides a foundation for future development of patient-reported outcome measures and interventions that address the unique burdens of BKV in transplant care.