Guidelines Disconnect: Patients' Voice Absent

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Patient-centeredness should become a core component of clinical practice guidelines, according to Dr Kalantar-Zadeh.
Patient-centeredness should become a core component of clinical practice guidelines, according to Dr Kalantar-Zadeh.

A decade ago, in one of my first editorials for Renal & Urology News, I argued that clinical practice guidelines needed to be developed by hands-on clinicians and community practitioners as opposed to the academicians who have minimal to no patient care responsibilities. In nephrology there are many renowned academicians who hardly see any patients but are invited to be core contributors to important practice guideline meetings and consensus conferences. I argued that there are serious implications for this discrepancy, including a guideline disconnect from the real-world problems of patient care. Another issue in academia is biased opinions, which may be due to industry relationships as well as egos that may severely cloud academicians' judgment, given that many academicians—even those with minimal ties with pharmaceutical companies—feel comfortable and indeed prefer strongly to refer to their own opinions and own publications as the source of “good” guidelines.

In the past decade, patient-centered considerations have gained greater prominence, but practice guidelines generally do not reflect this. Lack of patient centeredness in many practice guidelines, particularly in nephrology, results from the absence of representatives from patient advocacy group in most guideline meetings or consensus panels. A good example is dialysis practice guidelines, which recommend earlier dialysis initiation, more frequent dialysis, longer dialysis treatment sessions, and higher dialysis dose. These guidelines were developed by physicians who rarely ask dialysis patients how they feel about these recommendations. Practicing physicians may feel compelled to follow such guidelines to protect themselves against malpractice lawsuits, and dialysis companies have no choice but to optimize these expectations. Hence, in recent years, more patients are forced to undergo hemodialysis sessions of 4 hours or more, with its accompanying adverse effects, such as worsening cramps, low blood pressure episodes, post-dialysis fatigue, faster loss of residual kidney function, and other harms.

Another example pertains to patient-disconnected guidelines on dietary restrictions, such as low potassium and low phosphorus, diets. Overzealous potassium-restrictive guidelines, for instance, deprive patients of the fundamental bliss for fresh fruits and vegetables with high fibers, sadly leading to a higher likelihood of constipation that may paradoxically worsen hyperkalemia. Blaming patients' dietary habits – and calling them “non-compliant” patients – for their poorly controlled hyperphosphatemia instead of better management of hyperparathyroidism (as opposed to tolerating parathyroid hormone levels as high as 600 pg/mL as a result of the newer guidelines) has led to more patient frustration. In the past, nephrology guidelines were spearheaded by grass-root organizations, such as kidney foundations. It is time for patient-centeredness to become the core component of clinical practice guidelines.   

Kam Kalantar-Zadeh, MD, MPH, PhD

Professor & Chief, Division of Nephrology & Hypertension

University of California Irvine School of Medicine

Orange, California

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