The Doctor, Dialysis, and the Internet

This blog post was made by Dr. John Agar on October 24th, 2013.
The Doctor, Dialysis, and the Internet

The moment after you tell your patient that he or she has CKD3-5 and dialysis is approaching, his or her brain will click to instant neutral and little else of what you say will be heard, even if you are a skilled communicator. Later, they will think of all the questions they should have asked but were too frightened to...or, if time was limited, they may not have had the chance. Visit after visit, the same common sequence will recur: information "overwhelm" + later "recall vacuum" + subsequent Internet search.

Many patients—or their families—will seek further information on the Internet. This decision is often made on the way home from a "bad news" appointment. Patients worry about their options, have fears about how they feel or about their future, and may have side-effects or symptoms from their treatment, but there rarely seems to be enough time for in-depth discussion of these with their doctor. Once dialysis starts, patients often complain that their dialysis service is good at group rules and schedules—but not so adept at understanding them as individuals.

Increasingly, patients are learning of and considering home dialysis—and especially home haemodialysis—but find that their service is not home-familiar. They want to know if home dialysis is safe, how others cope, whether they will be home-supported, and whether the purported benefits of home dialysis are borne out by the experiences of other patients.

Patients often derive great comfort and reassurance by talking to others who have experienced home care and who know how they feel. The Internet offers many excellent self-help and support groups that, while they can never replace—nor seek to replace—the dialysis professional, can be a very useful source of comfort and wisdom. Many of the better sites are moderated by, or seek comment from, expert doctors and other dialysis-trained staff who help to guide sensible group discussion and ensure that the line between help and interference is not crossed.

It is time that medical professionals better understood that Internet use by our patients should not be feared, but embraced and used—to mutual benefit. It behooves us to know which sites offer both reliable and balanced information, so we can help guide the interface between our patients and the Internet.

Our service now provides a handout for each CKD3-5 and dialysis patient. It lists the URLs of several dialysis self-help discussion sites where, identified or unidentified, the patient can seek comfort and help through the experience of others. While challenging questions may come back at us as a result, better a questioning but engaged patient than an apathetic one.

So, why not think of doing the same?

Some of the sites I recommend and trust to give reasonable advice and/or discussion are:

Information sites:

www.homedialysis.org
= a US site with a home dialysis focus
Comment: also provides great all-dialysis information
www.nocturnaldialysis.org
= an Australian site (my own website)
Comment: primarily about home haemodialysis but information applicable to all HD
www.lifeoptions.org/help_book
= an excellent on-line or hard copy book
Comment: is an all-about-dialysis resource
www.kidneyschool.org
= excellent US educational site
Comment: an excellent all-topic educational resource
www.kidney.org.au/ForPatients/HealthFactSheets/tabid/609/Default.aspx
= Australian site
Comment: a good 'fact-sheet' site

Patient self-help sites:

www.facebook.com/groups/122326728212/
= a great interactive site
Comment: has professional moderators and contributors
www.ihatedialysis.com/forum/
= an unfortunate name, but the largest of the patient sites.
Comment: a patient-only site with no dialysis professional moderation

Tags: internet, support

Comments

  • John Agar

    Nov 15, 2013 8:27 PM

    Kathlynn,
    I am afraid that where there is hope, there is also hype.

    While individual cell lines (types) can now be fairly easily 'grown' in culture, and stem cells (cells that can be directed to turn into a number of different cells types) can now be made to 'differentiate', it is still a far cry from putting those together in anything like a functioning organ.

    It is true that a number of different cell types - eg: heart muscle cells that contract and 'function' or insulin-producing pancreatic cells - are now able to be introduced to 'repair' damaged heart muscle or to be injected into the main vein to the liver and can lodge, grow, and produce insulin in the liver ... these are two examples ... but that is a long way short of reproducing, for example, a functioning glomerulus with its' multiple cell types and its' complex structure and function.

    Growing hollow tubes - like a blood vessel, or a ureter, or even (like David Humes' extraordinary work) a renal tubule, is nearer. But, whole organs and/or functioning complex structures are a long, long way away yet. 3D printing may soon evolve to the point where a reliable structural framework can be made ... but to then populate that with the right cells in the right place that talk the right talk to each other to result in the right function(s) ... I wounldnt be holding my breath.

    Advances - for all the hype - are made incrementally, but slowly. It is great to see the imagination of the ideal, but frustrating to know of the Himalayan hurdles along the way.

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  • Kathlynn Cramer

    Nov 11, 2013 5:36 AM

    Have you heard that stem cells can grow or help heal damaged stage 4 or 5 kidney's? I have heard they have been successful in Europe. A questions I keep forgetting to ask.

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