A Pilot of the Patient Generated Index in Haemodialysis
Research type
Research Study
Full title
A Pilot feasibility of the use of the Patient Generated Index in Haemodialysis patients
IRAS ID
270558
Contact name
James Fotheringham
Contact email
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Haemodialysis for established kidney failure is associated with poor quality of life (QoL). This QoL is assessed using a range of instruments, some of which are tailored to the patient group, but not the individual completing the assessment. QoL measures are insensitive to changes over time due to individuals acceptance and adjustment to changes in health, which is what these instruments are trying to capture. Their outputs do not facilitate a purposeful discussion about treatments in clinical practice. The patient generated index captures five goals and priorities specific to the patient, asks the respondent to score them and prioritise their improvement. In addition to then being able to calculate a sensitive QoL score, the results can be used to enter into a discussion about individualising treatment to address unmet needs.
A prompt list was generated following a literature review for patients having difficulty identifying QoL measures. This study will perform the patient generated index in 30 prevalent in-centre haemodialysis patients at the time of consent and after six months. It will assess the feasibility of conducting the PGI in this specific patient cohort, performing a short interview after completion to assess the relevance and experience of completing the PGI, and at the six month assessment how treatment or perspectives may have altered as a result of completing a PGI. Other established QoL measures will also be collected to insure the PGI is reliable. This pilot work may inform future funding applications to explore the use of the PGI to support the individualisation of dialysis in existing patients.
REC name
South Central - Hampshire B Research Ethics Committee
REC reference
19/SC/0581
Date of REC Opinion
9 Dec 2019
REC opinion
Further Information Favourable Opinion