Qualitative study maps the psychosocial burden of polycystic kidney disease

Adults living with autosomal dominant polycystic kidney disease (ADPKD) carry a heavy psychosocial burden alongside the physical symptoms of their condition, according to a qualitative study published in BMC Nephrology. The research, led by Mesudiye Bulut and colleagues, explored in depth how patients experience their illness, the psychological and social problems it creates, and the strategies they use to cope.

ADPKD is a chronic inherited disorder with renal and extrarenal manifestations that can substantially affect quality of life. The authors note that uncertainty about disease progression, the prospect of future dialysis, and the demands of lifelong monitoring and treatment may create psychosocial difficulties and influence treatment adherence.

The study used a qualitative design with an experiential, interpretive orientation. Researchers conducted semi-structured, in-depth interviews with 25 adults with ADPKD who were attending a nephrology outpatient clinic in Ankara, Türkiye, between July and September 2025. Descriptive characteristics of the participants were summarised using counts, percentages, means, and standard deviations.

Interview data were analysed manually using a codebook approach to thematic analysis, structured by Braun and Clarke’s six-phase framework. This method produced three broad categories: illness experience, effects of the illness, and management of the illness process. Within these categories, the analysis identified seven themes and 29 subthemes.

Participants described a wide range of difficulties. These included pain, hypertension, fatigue, anxiety, fear of dialysis, genetic guilt, disruption of family relationships, employment difficulties, and stigmatisation. The findings underline that the impact of ADPKD extends well beyond kidney function into emotional life, family dynamics and working life.

The study also documented how patients respond to these pressures. Coping responses reported by participants included religious coping, emotional avoidance, and support from family members.

Under the theme of treatment adherence, the researchers identified medication and follow-up adherence as well as changing one’s lifestyle. The authors report that adherence-related experiences formed part of how participants managed the illness process, alongside their emotional and social coping efforts.

The researchers conclude that, in addition to its physical effects, ADPKD carries a substantial psychosocial burden, and that care focused only on medical management may leave important needs unaddressed. They suggest that routine assessment of patients’ and families’ psychosocial needs, together with multidisciplinary support, may strengthen coping and treatment adherence and reduce distress related to the disease and anticipated dialysis.

The published record is an early-access version, citable with a permanent DOI and subject to further edits before the final Version of Record appears.

Subject of Research: Psychosocial experiences and coping among adults with autosomal dominant polycystic kidney disease

Article Title: Illness experiences, psychosocial problems, and coping processes among individuals with autosomal dominant polycystic kidney disease: a qualitative study

Article References: Bulut, M., Kaya, Y., Hacıoğlu, B., & Akoğlu, H. (2026). Illness experiences, psychosocial problems, and coping processes among individuals with autosomal dominant polycystic kidney disease: a qualitative study. BMC Nephrology. https://doi.org/10.1186/s12882-026-05465-0

Image Credits: AI Generated

DOI: 10.1186/s12882-026-05465-0

Keywords: ADPKD, polycystic kidney disease, qualitative research, psychosocial burden, coping, treatment adherence, nephrology, thematic analysis, dialysis anxiety, genetic guilt, stigmatisation, Türkiye