Importance of patient-reported outcomes in glomerular disease 

The importance of patient-reported outcomes in glomerular disease was highlighted at the recent Irish Nephrology Society (INS) Winter Scientific Meeting in Galway.

Dr Michelle O’Shaughnessy, Consultant Nephrologist, Galway University Hospitals, presented on ‘Patient-reported outcomes in glomerular disease: PRO-GD’.

Dr O’Shaughnessy is leading a study titled, ‘Patient-led development of a patient-reported outcomes instrument to measure health-related quality-of-life in patients with glomerular disease’. She asked her colleagues to consider referring patients to this ongoing study and thanked everyone involved to date. The study is seeking a cohort of 180 patients. It is supported by the Health Research Board Clinical Research Facility in Galway. It is also supported by grant funding from the Health Research Board and the Irish Kidney Association (IKA).

The study aims to develop and validate an instrument for measuring patient-reported outcomes that have been deemed important and relevant by patients with glomerular disease. It also seeks to evaluate whether participation in the IKA ‘Living Well’ programme improves wellbeing in patients with glomerular disease.

The study is recruiting adults with glomerular disease living anywhere in Ireland. Participants complete a small number of questionnaires, sent to them by post or email, over the course of six months. No travel is required. For more information, email PROGD@universityofgalway.ie or visit https://ika.ie/research/

In the application for funding, there was a “big focus on patient and public involvement”, according to Dr O’Shaughnessy. Another important element was complementing the IKA’s strategic goals.

“The main aim of the Irish Kidney Association is to improve the quality-of-life for people with kidney disease,” she said.

‘Way forward’

Dr O’Shaughnessy told the meeting that patient and public involvement in research is the “way forward”.

“You don’t need ethics approval to involve a patient in your research team,” she added. “They are part of the research team. This is research carried out with or by members of the public, as opposed to research that is about or for them.” Dr O’Shaughnessy said patients advised on the creation of her study’s information leaflets. 

“I think we are a little bit slow in Ireland about including patient-reported outcomes, especially in glomerular disease,” she outlined. “In cancer research and in the US in general, they really are moving to include patient-reported outcomes in clinical practice and research.”

I think we are a little bit slow in Ireland about including patient-reported outcomes, especially in glomerular disease

Dr O’Shaughnessy said there is guidance available on how to develop a valid patient-reported outcomes instrument. She also highlighted the existence of the standardised outcomes in nephrology group (SONG) as a research resource.

“This is a group that has come together to identify core outcomes in clinical trials and there is a SONG GD,” she said. Working with patients and caregivers, this group developed a patient-reported outcomes tool, which rated the outcomes that are most important to patients.

For patients, maintaining kidney function, and preventing mortality and dialysis, had the highest priority scores. Blood pressure, for example, which clinicians measured all the time, had a lower priority score, added Dr O’Shaughnessy. “And in between dialysis and transplant and blood pressure, were all these other outcomes that we might ask about, but we don’t necessarily document; we don’t introduce an intervention that will improve their life.”

In her own study, patients have advised of the importance of the medication burden and asked for it to be included in the survey.

Dr O’Shaughnessy also drew attention to the PROMIS (Patient-Reported Outcomes Measurement Information System). Its purpose is to build accessible item banks to measure key symptoms and health concepts applicable to a range of chronic conditions, enabling efficient and interpretable clinical trial and clinical practice applications of patient-reported outcomes.

“They are freely available for public use,” she said.

During a questions and answers session, Dr O’Shaughnessy was asked about improving patient engagement with research. She said that researchers do ask about socio-economic factors and whether patients would like someone to attend the appointments with them. She also highlighted that efforts were made to accommodate people by providing paper-based versions and stamped addressed envelopes.

She stressed the need for the specialty to work together to increase research. “We are a small group,” she continued. “This won’t work unless we all promote that culture.”

Dr O’Shaughnessy also highlighted the need for better patient-facing materials.