Lower Urinary Tract Symptoms Network (LURN): Development and Use of Improved Assessments of Urinary Symptoms

Symptoms affecting the lower urinary tract, such as urinary incontinence, frequent urination, and bladder pain, are common among adults and often have negative impacts on a person’s quality of life. Gaining a comprehensive understanding of the full spectrum of lower urinary tract symptoms (LUTS) and their impact on people dealing with them will allow for better diagnoses and development of improved treatment options.

LUTS are typically assessed using questionnaires that allow individuals to self-report and rank their symptoms, and sometimes their quality of life, via a point scale to determine their symptom severity scores. When used alongside other clinical tests and physical examinations, these assessments can help guide clinicians in their recommendations. Several questionnaires have been developed to assess LUTS, however many of them are either limited in their scope, focusing on specific disorders, or were originally developed to assess sex and/or gender-specific symptoms. For example, the American Urological Association Symptom Index was initially designed to assess symptoms of benign prostatic hyperplasia in men, while the Pelvic Floor Distress Inventory evaluates the impact of LUTS and other symptoms on the quality of life of women with pelvic floor disorders. Additionally, many of the available questionnaires do not assess the full range of LUTS.

In 2012, NIDDK established the Symptoms of Lower Urinary Tract Dysfunction Research Network (LURN) with the long-term goals of better understanding different LUTS subtypes and improving measurement of patient experiences of LUTS. To achieve these aims, LURN researchers first developed the Comprehensive Assessment of Self-Reported Urinary Symptoms (CASUS), which is a 93-question survey measuring a broad variety of symptoms in both men and women with LUTS.

For use in a clinical or research setting, an optimal questionnaire must be simple and brief enough to ensure that people can fully understand and complete it, yet comprehensive enough to gather meaningful information. Therefore, using the CASUS as a starting point, LURN researchers along with a panel of clinicians used a multi-step process to develop two shorter-form questionnaires: the LURN Symptom Index 10 (SI-10) and the LURN Symptom Index 29 (SI-29). The SI-10 is primarily intended for clinical use and is composed of 10 core questions, while the SI-29, which consists of 29 core questions, is primarily designed for research. Both questionnaires cover five key symptom areas of LUTS: urinary urgency, incontinence, urination difficulty, night-time frequent urination (referred to as nocturia), and pain. When tested for validity against commonly used LUTS measurement questionnaires, both SI-10 and SI-29 provided scores that were comparable to those of the established surveys while also providing assessment of a broader range of symptom areas.

The LURN questionnaires have already proven to be valuable resources in both research and clinical settings, facilitating assessment of LUTS symptoms and their impact on people’s lives. Several hospitals have integrated the SI-10 questionnaire into their electronic health record systems, providing clinicians with more insight into the symptoms that their patients experience.

Recognizing that addressing disparities in urological health requires ensuring these tools are accessible to diverse patient populations, LURN researchers optimized each question during questionnaire development to promote easy translation into other languages. In fact, the NIDDK-supported Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium developed a Spanish translation of the SI-10 for inclusion in its RISE FOR HEALTH study of women’s bladder health. In addition, Turkish translations of both questionnaires and a Hindi version of the SI-29 are available for download on the LURN website, and more translations are planned for the future. By making the questionnaires available in multiple languages, LURN scientists are helping ensure that their research will be both broadly applicable and widely available, thus improving comprehensive LUTS assessment in diverse communities.

More research will be necessary to fully understand and optimally treat the complex array of diseases and conditions that contribute to LUTS. Through development of the CASUS, SI-29, and SI-10 questionnaires, LURN has laid a key foundation for that work by providing comprehensive tools that are yielding new insights that may one day improve diagnostic and treatment approaches for LUTS.

For more information, visit https://nih-lurn.org/Resources/Questionnaires.