Standardised outcomes in nephrology- Haemodialysis (SONG-HD)

• Research type

  Research Study

• Full title

  Standardised Outcomes in Nephrology- Haemodialysis (SONG-HD)

• IRAS ID

  187543

• Contact name

  Donal O'Donoghue

• Contact email

  donal.o'donoghue@srft.nhs.uk

• Sponsor organisation

  University of Sydney

• Duration of Study in the UK

  0 years, 5 months, 12 days

• Research summary

  Chronic kidney disease (CKD) is a major public health problem and affects nearly 7% of the UK population. There are currently over 55000 people dependent on kidney replacement therapy in the form of a kidney transplant or dialysis in the UK. Dialysis costs the NHS approximately £750 million per year, and mortality rates in the dialysis population remain 10-100 times higher than the general population. Dialysis is invasive, time-consuming, and imposes an enormous burden on the patients' identity, family, relationships, and employment. Dialysed patients report lower quality of life (QoL) than many other diseases, including cancer.

  This escalating burden has spurred an increase in randomised trials and other forms of research in dialysis, yet health and QOL remain poor. The causes of this are multiple and complex but in part can be attributable to fundamental flaws in the design and reporting of studies, particularly outcomes chosen for study. Problems include choosing outcome measures not relevant to patients, under-use of relevant outcomes, and reporting bias.

  In response, internationally there is a developing research paradigm focussed on developing core outcome sets across all disease areas.

  To date, no core outcomes set have been developed in haemodialysis.
  The aims of this project are to:
  1. To identify outcomes that are important to patients, caregivers, clinicians, policy makers
  2. To generate an evidence-informed, prioritised list of core outcomes

  This aspect of the project includes a survey of patients and clinicians. Our methodological framework is endorsed by the World Health Organisation as a successful approach for identifying core outcomes.

  The outcomes will inform subsequent work in the development of outcome measures for evaluating outcomes that are meaningful and relevant to users of the research who are primarily patients and their clinicians.

• REC name

  West Midlands - South Birmingham Research Ethics Committee

• REC reference

  15/WM/0303

• Date of REC Opinion

  18 Aug 2015

• REC opinion

  Favourable Opinion