Study Status :
We completed initial patient and carer workshop meetings in December 2017 and March 2018. Following successful Ethics approvals we have worked with 5 sites and recruited a total of 43 patients and 28 carers who all have completed the questionnaires. Those sites are now in the process of undertaking the second set of questionnaires which we hope to have returned by August. Finally we are in the process of interviewing up to 10 patients and 10 carers which is also due to finish by August 2019. Once all this data is collated we will then proceed to the analysis phase.
Study Aims and Approach :
Collaboratively with patients and their co-habitants, our work will test the best ways to explore the experience of and outcomes that matter to home haemodialysis (HHD) patients by piloting processes of information collection and identifying the instruments that are best suited to this patient group and these circumstances.
At patient and carer interviews we will map the individual journey to HHD, understand achievement of competencies, barriers, facilitators and support mechanisms. We will aim to better understand carer burden. We will evaluate the use of Social Return on Investment methodologies to measure broader socio-economic outcomes, permitting the inclusion of the views of multiple stakeholders in a singular monetary ratio.
Our specific objectives will be to better understand:
- The patient and carer (cohabitee) experience of home haemodialysis and wider support needs
- Community links (assets) and how these can be utilised to reduce social isolation
- The educational experience that HHD patients receive to prepare them for the modality choice and uptake of the therapy
- The health economics of HHD including the monetary and non-monetary costs using SROI methodologies
- The technological challenges of HHD with a view to identifying practical solutions
The ultimate goal will be to use this pilot information to prepare a research grant that will allow us to develop an intervention(s) that enables better support for HHD from the patient perspective and therefore makes HHD a much more attractive option to patients.
Please find the Study Protocol and Site Initiation visit presentation here for your information
Study Information Sheets
Patient Information Sheet and Carer Information Sheet
Interview Information Sheet