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

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. 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. 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. 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. Most people are exposed to a virus called BKV virus (BKV) during childhood. It usually stays inactive in the body and does not cause problems. But for people who receive a kidney transplant, the medications they take to prevent rejection can weaken their immune system. This can cause BKV to “wake up” and become active again. When this happens, it can damage the new kidney and may even lead to its failure. There is no approved treatment for BKV, and managing it often involves reducing the very medications that protect the transplant. Although BKV often doesn’t cause physical symptoms, it can still have a major impact on people’s lives. In this study, we spoke with 12 kidney transplant recipients who had experienced BKV. They described how the virus affected their mental health, work, relationships and ability to manage their care. Many felt scared about losing their kidney, confused about treatment, and overwhelmed by the need to coordinate appointments and insurance on their own. In most cases, the burden came not from feeling sick, but from the emotional strain and extra care required to manage the condition. This study is the first to create a model that shows how BKV affects quality of life. It helps highlight the emotional and practical challenges patients face, not just the medical ones. We hope this work leads to better support, education, and care for people living with BKV, and helps researchers develop tools that reflect what matters most to patients.