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:
- 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.
- 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
- 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