The SONG–HD Initiative: Join in the Chorus!
The outcome measures that dialysis professionals use in most dialysis trials can fail to match well with the problems and expectations that matter most to patients and carers.
Professionals tend to concentrate on laboratory results, fistula access, Kt/V, hospitalisations and survival, but patients and carers commonly have different goals. For them, the quality of life can often matter more than its quantity, while symptom relief, work capability, schooling, family unity, feeling burdensome, transport and travel, general well-being and other lifestyle factors loom as far larger imperatives than does meeting a laboratory target.
While medical trials seek insight into the things that we—the professionals—think matter, a trial that uses or measures outcomes or end-points that do not represent the things that matter to patients, will miss the most important outcomes and lead to the wrong decisions.
To address this potential mismatch, an initiative of the Australian Kidney Trials Network—the SONG-HD initiative—is seeking to broaden the HD information base by asking all who have a stake in dialysis, providers and users alike, to rank the things that matter most to them. The study will poll the opinions of medical, nursing, administrative and industry sectors, and above all, will ask dialysis patients and carers for their opinions. Using a three part, on-line survey, SONG-HD aims to identify and rank the things that matter most to each group.
SONG-HD is being conducted from Australia, but is designed to be an international study that seeks input from as many dialysis-involved groups, in as many countries, as possible. The larger the number of participants and the wider the net, the more likely we are to get a clearer idea of the things that matter and that should inform a better design for future trials.
This is to be a simple study. It is not a lengthy, tiring survey as some can be, but by using a three part survey, participants can firstly rank their views, secondly compare their own answers with those of the others in their group, and finally decide if their views remain unchanged or may alter as a result of that comparison.
Those who wish to take part can register online at:
Here, you will find a simple registration form that includes a simple, plain language explanation of the SONG-HD process.
The SONG-HD study will allow all stakeholders to have a say in what matters most, to them. It will help to shape where more effort needs to be made, and what issues, problems or factors need greater attention. If you read this blog, please take the survey and share it with your colleagues and dialyzors!
I commend SONG-HD to you. By engaging with and participating in SONG-HD, you will be able to exert a direct influence on the direction that future dialysis studies may take. This is an opportunity not to be missed.