Addressing gaps in pain management in patients with ADPKD


Clinicians should work closely with patients with ADPKD to foster open dialogue and develop a personalized care plan to help manage their pain.

In the United States, approximately 140,000 adults currently live 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 dialysis or transplantation in approximately 50% of all affected patients. Worse still, most patients – up to six out of 10 – suffer from chronic pain caused by ADPKD.

Chronic pain is common in patients with advanced ADPKD. In a cross-sectional study that examined the quality of life of patients with ADPKD, back pain was present in 51% of patients, with 30% of these patients experiencing it “sometimes” and 21% experiencing it “often or always”. The pain is usually related to a combination of enlarged cysts causing stretching of the renal capsule and exaggerated lumbar lordosis causing mechanical pain. Symptoms related to abdominal fullness and pain are more prominent in patients with large renal volume and diminished renal function.

Effective pain management strategies should be identified

With research indicating that 39% of patients with ADPKD are “somewhat or completely unsatisfied” with pain treatment because they are physically unable to do what they would like, it is imperative that clinicians identify effective management strategies to ADPKD and a patient’s chronic pain. .

It is essential to investigate any episode of new flank pain or significant change in chronic pain in patients with ADPKD, as patients may develop infections or ruptured cysts that require timely treatment. Physicians should also consider that patients with ADPKD are at risk of developing abdominal pain unrelated to their kidney. Although acute or chronic abdominal pain is frequently linked to kidney cysts, it can also be linked to cysts that develop on the liver. Carefully understanding a patient’s history and performing a thorough physical examination is usually telling, as cystic hemorrhage, urinary tract infection, and nephrolithiasis are common causes of acute pain in ADPKD. In addition, the frequency of cystic hemorrhages, macroscopic hematuria of cysts and nephrolithiasis is related to an increase in renal volume and should be monitored.

A non-pharmacological approach should be tried initially

In my practice, I initially recommend a non-pharmacological approach to pain management. For example, encouraging patients to wear a supportive garment or corset, avoid high heels, exercise, manage weight, undergo physical therapy and/or acupuncture and/or using heating pads can be beneficial for pain management. If non-pharmacological methods fail, a non-narcotic pain reliever such as acetaminophen should be tried. Although nonsteroidal 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 pain medications may be an option. In severe cases, surgical procedures such as decortication, cyst marsupialization, or nephrectomy are used to control intractable chronic pain. While laparoscopic renal denervation may yield favorable results for pain control in patients with chronic intractable pain, early detection and frequent monitoring are essential to ensure pain can be adequately managed without these interventions.

Integrate management strategies into patient-clinician communication

Studies suggest that different ADPKD management strategies, especially those that delay the risk of rapid progression, may help reduce patients’ pain levels as it may slow their increase in total kidney volume. For example, a key management strategy for ADPKD is to encourage patients to adopt a healthy lifestyle. This can include making informed food choices, staying physically active, getting enough sleep, drinking enough water, and aiming for a healthy weight.

Clinicians must also empower patients to be informed about ADPKD and the role it plays in their overall health, as this disease affects not only them, but often their families. Fortunately, there are helpful resources, such as, where patients can learn more about the disease, risk of progression, and available management strategies.

For those already living with ADPKD, effectively managing their pain shouldn’t be an added burden. As clinicians, it is our responsibility to work with patients to foster open dialogue and develop a personalized care plan that will increase physical comfort and optimize kidney health.


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