Glomerular diseases (GDs) are rare kidney diseases that affect the glomeruli (filters) of the kidneys and are a leading cause of kidney failure worldwide. While biochemical (e.g., blood/urine test results) and clinical (e.g., kidney failure, death) outcomes are typically collected in GD research, patient-reported outcomes (PROs) are highly prioritised by patients with GD as equally important measures of their illness experience. However, incorporation of PROs into GD research and clinical practice is hampered by the absence of a PRO instrument tailored to the needs and priorities of Irish patients with GD.
This study aims to develop and validate an instrument to measure PROs prioritised by patients with GD and to use this instrument to evaluate the effectiveness of the IKA’s Living Well programme in improving patients’ health-related quality of life (HRQOL).
Objective 1: Develop a Patient-Reported Outcomes – Glomerular Disease (PRO-GD) PRO measurement instrument
Hypothesis: Item banks (domains) from the Patient Reported Outcomes Measurement Information System (PROMIS) capture PROs prioritised by Irish patients with GD.
Objective 2: Determine reliability and validity of the PRO-GD instrument in Irish patients with GD
Hypothesis: The PRO-GD instrument will be a valid and reliable measure of HRQOL in Irish patients with GD. Objective 3: Evaluate the impact of the IKA’s Living Well programme on HRQOL in patients with GD
Hypothesis: The Living Well programme improves HRQOL in patients with GD
Overall, this proposal will tackle the unmet need of how, and why, to measure PROs in patients with GD. It will produce a PRO-GD instrument that is validated in patients with GD and can immediately be applied in clinical and research settings. It will also determine whether the Living Well programme improves HRQOL in Irish patients with GD, and could be a safe and effective non-pharmacologic intervention to benefit all Irish patients with GD.
