Patient-led development of a “Patient Reported Outcomes” instrument to improve health-related quality of life in patients with Glomerular Disease – PRO-GD

Glomerular diseases (GDs) are rare kidney diseases that damage kidney filters (glomeruli) and can result in kidney failure, hospitalisation, and death. Glomerular diseases also affect health-related quality of life (HRQOL), including reduced ability to participate in normal life, fear or anxiety about the future, low mood, or eroded confidence. These “patient-reported outcomes” (PROs) are poorly studied in GD, yet recent evidence suggests that they are as, if not more, important to patients with GD than traditional clinical measurements. 

The PRO-GD study aims to develop a new questionnaire to study HRQOL in Irish patients with GD and to measure the impact of the Irish Kidney Association’s (IKA’s) “Living Well” chronic disease self-management programme on HRQOL in patients with GD. 

The study will have three phases: 

  1. The research team will consult with Irish patients with GD to develop a new PRO questionnaire (PRO-GD) that is relevant and acceptable to Irish patients. These patients will also help co-design advertising and recruitment strategies for the study. 
  2. Irish patients with GD will be invited to complete the PRO-GD questionnaire to confirm that using this questionnaire in patients with GD is valid and reliable 
  3. Some patients will then complete the Living Well programme. Follow-up PRO-GD questionnaire responses will be compared between those who do versus don’t complete this programme, to evaluate the impact of the programme on HRQOL. 

We expect this research to:

  • Increase awareness amongst patients, their families, their clinicians, and wider society, of the effect that GD can have on patient wellbeing; 
  • Develop a new PRO-GD questionnaire that can be applied in diverse clinical and research settings e.g. more comprehensive reporting of drug treatment effects to support shared treatment decision-making; and 
  • Determine whether completing the Living Well programme improves HRQOL in patients and GD.
Award Date
01 July 2022
Award Value
Principal Investigator
Dr Michelle O’Shaughnessy
Host Institution
National University of Ireland Galway
HRCI-HRB Joint Funding Scheme