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Mapping Patient-Generated Index (PGI) Responses to the Kidney Disease Quality of Life 36-Item Short Form Survey (KDQOL-36): A Content Analysis [PCC279]

Wednesday May 6, 2026 12:15 - 17:00 Poster Arena

Presenter: Melissa Suzuki

Track: Poster session, Illness Communication

Background and Purpose: Standard quality-of-life tools, like the KDQOL-36, are used in kidney care to assess symptom burden and functional status but may not fully reflect patient-prioritized concerns. The PGI further supports a person-centred assessment by inviting each person to identify, rate and prioritize life areas most important to them. This analysis was related to a broader realist evaluation study exploring how, why, for whom, and what circumstances cognitive behavioral therapy works in dialysis care. Our objective was to describe which priorities identified via the PGI are represented or missing in the KDQOL-36. Methods: We analyzed 203 PGI responses from 47 participants receiving dialysis in Alberta, Canada, using summative content analysis and the NVivo software. The PGI allows participants to list up to five most important areas of their life affected by their health condition (in this case, kidney failure). The KDQOL-36 includes the Short Form-12 general health measures and kidney-specific questions on symptom burden, effects of kidney failure, and perceived life impact. Each PGI response was mapped to one of five KDQOL-36 subscales: Physical Health, Mental Health, Burden of Kidney Disease, Symptoms and Problems, Effects of Kidney Disease on Daily Life, or classified as new categories. Coding frequencies and categories were summarized using word clouds and sunburst. Results: The PGI responses predominantly mapped onto KDQOL-36 subscales of Effects of Kidney Disease on Daily Life, Physical Health, and Symptoms and Problems, though the other subscales were also represented. Examples of priorities not well-represented by the KDQOL-36 domains include those pertaining to autonomy, lifestyle, leisure, motivation, pet ownership, safety, self-identity, socioeconomic, spirituality, treatment adherence, comorbidity, and grief. Conclusion: While the KDQOL-36 captured structured subscales such as symptom burden and physical function, the PGI responses highlighted priorities closely linked with social determinants of health and other psychosocial aspects central to patient experience.
Language

English

Conference

GCPCC

GCPCC Code

PCC279

Lecturers

Profile image for Melissa Suzuki

Melissa Suzuki Presenter

PhD Student
Trinity Western University

Marlo Salum, Melissa Suzuki, Kara Schick-Makaroff, Richard Sawatzky