Closing gaps in pain management for patients with ADPKD

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Physicians should work closely with patients with ADPKD to encourage an open dialogue and develop a personalized treatment plan to help them manage their pain.


In the United States, an estimated 140,000 adults are currently living with autosomal dominant polycystic kidney disease (ADPKD), a genetic condition that causes fluid-filled cysts to develop and enlarge on both kidneys, eventually leading to kidney failure. ADPKD, the most common genetic kidney disease, is the fourth leading cause of kidney failure, requiring either dialysis or a transplant in approximately 50% of all affected patients. Worse, most patients – up to six in ten – suffer from chronic pain caused by ADPKD.

Chronic pain is common in patients with advanced ADPKD. In a cross-sectional study examining QOL in patients with ADPKD, 51% of patients experienced back pain, with 30% of these patients experiencing back pain “sometimes” and 21% “often or always”. The pain is usually due to a combination of enlarged cysts causing stretching of the renal capsule and exaggerated lumbar lordosis causing mechanical pain. Symptoms related to fullness and pain are more pronounced in patients with large kidney volume and impaired renal function.

Effective pain management strategies need to be identified

Because research shows that 39% of patients with ADPKD are “somewhat or completely dissatisfied” with pain management because they are physically unable to do what they want, it is imperative for clinicians to develop effective management strategies for both the Identify a patient’s ADPKD as well as chronic pain.

Investigating any episode of new flank pain or any significant change in chronic pain in patients with ADPKD is critical because patients may develop cyst infections or ruptures that require timely treatment. Physicians must also consider that patients with ADPKD are at risk of developing abdominal pain that is not related to their kidneys. While acute or chronic abdominal pain is often related to kidney cysts, it can also be related to cysts developing on the liver. A careful understanding of a patient’s medical history and thorough physical examination are usually instructive, as cyst bleeding, urinary tract infection, and nephrolithiasis are common causes of acute pain in ADPKD. In addition, the incidence of cyst bleeding, cyst macrohematuria, and nephrolithiasis is associated with increased renal volume and should be monitored.

A non-pharmacological approach should be tried first

In my practice, I recommend a non-pharmacological approach to pain management first. For example, in managing pain, it may be helpful to encourage patients to wear a supportive garment or corset, avoid high heels, exercise, control their weight, seek physical therapy and/or acupuncture, and/or use heating pads. If non-pharmacological methods fail, a non-narcotic analgesic such as acetaminophen should be tried. Although nonsteroidal anti-inflammatory drugs (NSAIDs) are effective, these drugs should be avoided in patients with reduced glomerular filtration rate (GFR).

If the pain persists despite these measures, stronger painkillers may be an option. In severe cases, surgical procedures such as debarking, marsupialization of cysts, or nephrectomy are used to control intractable chronic pain. While laparoscopic renal denervation can produce favorable pain control outcomes in patients with refractory chronic pain, early detection and frequent monitoring is critical to ensure pain can be properly managed without these interventions.

Integration of management strategies in the communication between patient and doctor

Studies suggest that various treatment strategies for ADPKD, particularly those that delay the risk of rapid progression, may help reduce patient pain levels as this may slow the increase in total kidney volume. For example, a key treatment strategy for ADPKD is to encourage patients to adopt a healthy lifestyle. This may include making informed dietary choices, staying physically active, getting enough sleep, drinking an appropriate amount of water, and aiming for a healthy weight.

Physicians must also empower patients to be educated about ADPKD and the role it plays in their overall health, as this disease affects not only them but often their families as well. Fortunately, there are helpful resources such as www.ADPKDQuestions.com where patients can learn about the disease, risk of progression, and available treatment strategies.

For those already living with ADPKD, managing their pain effectively should not be an added burden. As clinicians, it is our responsibility to work with patients to encourage open dialogue and develop a personalized treatment plan that increases physical comfort and optimizes kidney health.

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