Patient-reported outcome measures in urology.

PURPOSE OF REVIEW: Many urologic treatments have similar clinical outcomes, necessitating alternative methods to discriminate between options. Patient-reported outcome measures (PROMs) have become the new standard for evaluating the patient experience, and their use has drastically increased over the past decade. The purpose of this review is to discuss the status of PROMs in urology, highlight commonly used tools and address their future direction. RECENT FINDINGS: An increasing number of urology-specific PROMs tools have been developed and validated. An increased focus on patient-centered care has provided an impetus for their rise in use. Implementation of PROMs has transitioned from being primarily descriptive in nature to producing actionable findings. Many PROMs are now implemented in daily clinical practice. The future of PROMs will involve new instrument development, integration into clinical practice and the use of PROMs as performance measures. SUMMARY: PROMs are effective tools for characterizing symptom burden and health-related quality of life. With increasing clinical implementation, PROMs are playing an increasing role in patients' clinical decision-making.

Advance Care Planning and Patient Preferences in a Feasibility Pilot Study to Improve End-of-Life Communication among Men with Metastatic Urological Malignancies.

INTRODUCTION: Rates of advance care planning for patients with cancer are poor despite efforts to enhance discussions regarding goals of care. Good patient-physician communication is critical to providing quality end-of-life care and, thus, it is important to identify effective interventions to improve systems through which patient preferences are addressed. METHODS: To improve rates of advance care planning as well as examine patient preferences regarding end-of-life care, we developed an integrated urology-palliative care clinic. All patients with a new diagnosis of a metastatic urological malignancy or castration resistant prostate cancer seen in a urology clinic within the Veterans Affairs Greater Los Angeles Healthcare System were offered a palliative care referral to be performed immediately after their urology appointment. The primary outcome was completion of an advance directive or POLST (Physician Orders for Life-Sustaining Treatment) form and the secondary outcome was patient preference regarding end-of-life care. RESULTS: A total of 59 patients were enrolled in the study between February 2012 and October 2016, and no patients were lost or excluded. There were 25 eligible patients who declined enrollment. Overall 85% of patients completed an advance directive or POLST form, and 98% chose to withhold cardiopulmonary resuscitation, advanced cardiac life support and artificially administered nutrition. CONCLUSIONS: High levels of advance care planning are achievable in an integrated urology-palliative care clinic and the majority of patients with a terminal illness are averse to aggressive end-of-life care.

Engaging patients in complex clinical decision-making: Successes, pitfalls, and future directions.

BACKGROUND: By 2022, there will be 18 million predicted cancer survivors, which is an estimated 30% more than the number of survivors in 2012. In prostate cancer alone, the most common cancer in American men other than skin cancer, 1 in 7 men will be diagnosed during their lifetime. Nevertheless, only approximately 1 in 39 will actually die of the disease. Although life expectancy is often good, these men have multiple treatment management options to choose from, including active surveillance, surgery, or radiotherapy, each of which carries its own array of long-term adverse effects. The same applies to renal cancer where patient have to sift through information to decide among active surveillance, partial nephrectomy, racial nephrectomy, robotic vs. open surgery, and ablation. BASIC PROCEDURES: Ultimately, patient, providers, and stakeholders lack high-quality evidence to effectively guide treatment decisions, and these decisions become even harder to discern when considering end-of-life care, palliative care, and the ethics regarding the new End of Life Option Act. As of November 1, 2016, the number of open urologic cancer clinical trials listed on ClinicalTrials.gov was 843. MAIN FINDINGS: Although we continue to make tremendous strides in urologic cancer care, our options for choosing the best treatment from a patient and provider standpoint are seemingly growing murkier. We need to continue to understand how health-related quality of life varies from patient to patient, and ultimately, incorporate patient preferences and values into the treatment decision in order to make high-quality treatment decisions. CONCLUSIONS: The remained of this articles will focus on the significant strides made in urologic oncology regarding these difficult decisions from localized disease to end-of-life care and also will detail what needs to be done as we continue to pivot forward.