Patient Journey COE Articles


  • ASCO 2019: Patient-Reported Outcomes in IMmotion150: Atezolizumab alone or with Bevacizumab versus Sunitinib in First-Line Metastatic Renal Cell Carcinoma

    Chicago, IL ( The landscape of systemic therapy for metastatic renal cell carcinoma (mRCC) is rapidly changing. Beyond the addition of immune checkpoint inhibitor combinations (nivo/ipi), additional TKI’s (cabozantinib), there are now combination therapies that are demonstrating excellent responses rates in the first line. The recent data from KEYNOTE‑426has led to the approval of axinitib/pemrbolizumab in the first line for mRCC, and as can be expected from this combination, it seems to have efficacy for good, intermediate and poor risk patients.
    Published June 5, 2019
  • EAU 2020: The Real Effect of Prostate Cancer Treatment: EUPROMS First-Ever Prostate Patient-Driven Quality of Life Study

    ( André Deschamps, MD, presented a study assessing the quality of life of patients after being treated for prostate cancer. The study involved a 20-minute online survey intended for patients with prostate cancer who received treatment in Europe. It is an observational one-arm study, aiming to examine the quality of life of prostate cancer patients in Europe. The study used validated quality of life questionnaires, including:
    Published July 19, 2020
  • ESMO 2019: Invited Discussant: Patient Reported Outcomes in Metastatic Hormone-Naïve Prostate Cancer and Who to Give Primary Radiotherapy To?

    Barcelona, Spain ( At the prostate cancer poster discussion at ESMO 2019, Dr. Henrik Gronberg provided a discussion of three important abstracts: the updated STAMPEDE “M1|RT Comparison”, as well as patient reported outcomes from both ENZAMET and TITAN

    Published September 30, 2019
  • ESMO 2019: Patient-Reported Outcomes From TITAN in Patients with Metastatic Castration-Sensitive Prostate Cancer

    Barcelona, Spain ( Androgen deprivation therapy (ADT) has long been considered the standard of care for patients with metastatic prostate cancer, however recent studies have shown improved survival outcomes by adding additional agents. In the TITAN study, compared with placebo, the addition of apalutamide to ADT significantly improved radiographic progression-free survival (rPFS; HR 0.48, 95% CI 0.39-0.60; p < 0.0001), and overall survival (OS; HR 0.67, 95% CI 0.51-0.89; p = 0.0053) in patients with mCSPC.1 Dr. Agarwal and colleagues evaluated pain, fatigue, and overall health-related quality of life of patients in TITAN.

    Published September 30, 2019
  • Patient-Reported Outcomes in Randomized Clinical Trials Including Bladder Cancer Patients - Expert Commentary

    Several randomized clinical trials (RCTs) have incorporated patient-reported outcomes (PRO) to evaluate the effectiveness of new treatment modalities. Adhering to systematic and consistent reporting methods is critical for defining the impact of cancer treatments on clinical trial participants.
    Published January 7, 2020
  • SUO - AUA Summer Webcast: Supportive and Palliative Care for Urologists

    ( Elizabeth Wulff-Burchfield, MD, is a medical oncologist specializing in palliative care. At the 2020 Society of Urologic Oncology Virtual Webcast, she discussed supportive and palliative care for urologists. Palliative care is defined as specialized health care for people living with serious illness, and is a type of care focused on providing relief from symptoms and stress of a serious illness. Ultimately, the goal is to improve quality of life of both the patient and the whole family. This includes efforts from an interdisciplinary team of physicians, nurses, social workers, and chaplains, and is provided alongside conventional care, including care with curative intent. Importantly, palliative care is appropriate at any age and for any stage of a serious illness.

    Multiple studies have demonstrated the benefits of outpatient palliative care. Patients with cancer undergoing outpatient palliative care have better quality of life and symptom control when receiving both palliative care alongside routine cancer. Furthermore, data also shows better satisfaction with care, more time in hospice, and less aggressive care at the end of life. In a seminal study by Temel et al.,1 despite fewer patients receiving aggressive care at the end of life, the median overall survival was longer (11.6 months vs 8.9 months, p=0.02) for patients receiving early palliative care compared to standard of care.

    Dr. Wulff-Burchfield noted that it is important to distinguish between palliative care and hospice. Hospice, as defined by Temel et al., is for patients of all ages who have a prognosis of survival of ≤ 6 months if the disease follows its usual course. In these situations, patients must forego Medicare coverage for curative intent and other treatments related to a terminal illness. Primary palliative care ensures that the core skills and competencies required of all health care professionals is in place, which Dr. Wulff-Burchfield notes that most urologic oncologists are already equipped with. Specialty palliative care includes a group of specialist clinicians and organizations that provide expert consultation and/or co-management. Primary palliative care is needed because patients are frail, they have comorbidities, and they need big operations for cancer with high stakes.

    Primary palliative care in urologic oncology encompasses a number of essential skills and tasks, namely (i) managing cancer- and surgery-related symptoms, (ii) delivering difficult news, (iii) attending to psychological, existential, or cultural-specific needs of patients, and (iv) coordinating care with other members of the oncology team. All of these items are important, however the preoperative communication and decision-making is arguably the most crucial of all primary palliative care skills for surgeons. Decision regret is mostly avoidable, but when it occurs is a painful experience for all parties. The urologic oncology community is not immune to this risk as decision regret can negatively effect patient quality of life for patients with prostate cancer. However, this effect can be mitigated with decision-making for localized disease, with the goal of patient coordinated decision making and not necessarily focusing on the surgical approach.

    The historical philosophy underpinning preoperative decision-making was the “fix it” concept: An illness is a deviation from normal function, and medical care (including surgery) exists as a “fix”, restoring normal function. This concept is engrained in medicine, but it is flawed and this can easily lead down an intervention-focused treatment pathway without due consideration of other strategies. Appropriateness relates to assessment of medical risk and benefit and takes into account frailty assessment tools, comorbidity indices, and national guidelines. Multiple interventions may promote appropriateness of surgical offering, but may require peer review, utilization review and payment schedules. However, appropriateness determinations are not necessarily shared-decision making, instead it is determined by matching appropriate treatment offerings to patients’ values and priorities. Indeed, shared-decision making needs an individual patient level of appropriateness. There are currently no standard measures for patient engagement and goal assessment – this needs to be a research priority at the intersection of palliative care and surgical disciplines, including urologic oncology. Preoperative advance care planning with decision aids may be one solution to this unmet need. The above discussion on appropriateness is nicely summarized by the following figure:2


    According to Dr. Wulff-Burchfield it is important for surgeons to discuss best case and worst-case scenarios with their patients. Communication tools seeking to connect the surgical plan with patient goals based on patient tolerance of the medical burden are important. The surgeon is the best person to describe and depict the best and worst possible outcomes from a given procedure and then directs the patient to the most likely outcome. Patients don’t always share in our understanding or expectations about their cancer outcomes, which can impede our ability to engage in shared decision-making, however it is possible for them to bridge this gap. Assessing their illness is a form of understanding, and we can also invite them to imagine a worse health state and discuss theoretical plans in this disease state.

    As urologic oncologists, there are certain patients that should be on our radar for needing palliative care. These patients include those that have pain and symptom management needs, patients (or caregivers) that are in distress, those requiring advanced care planning, and those that require hospice discussions. There is often no best or good option for managing complex problems. Many older adults are willing to accept a medical burden in pursuit of a cure, but many of these same patients have unrealistic expectations. Additionally, patients’ caregivers can provide insight but also have to worry about the impact of decision making on relationships with the patient.

    Dr. Wulff-Burchfield concluded this excellent talk on palliative care in urologic oncology with the following take-home messages:

    • Palliative care is medical care focused on quality of life for patients facing serious illness
    • Palliative care is appropriate for any age and any stage in serious illness – it can be given alongside standard and even aggressive urologic care, including surgery, radiation, chemotherapy, etc
    • Hospice is a specific form of palliative care limited to those with a life-expectancy of ≤ 6 months
    • Palliative care has the potential to improve outcomes that matter to you and your patients

    Presented by: Elizabeth Wulff-Burchfield, MD, University of Kansas Medical Center, Kansas City, MO, USA 

    Written by: Zachary Klaassen, MD, MSc – Assistant Professor of Urology, Georgia Cancer Center, Augusta University/Medical College of Georgia, Augusta, GA, USA, Twitter: @zklaassen_md, at the Society of Urologic Oncology (SUO) - American Urologic Association (AUA) 2020 Summer Webcast Program, July 18, 2020.


    1. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010 Aug 19;363(8):733-742.
    2. Cooper Z, Sayal P, Abbett SK, et al. A conceptual framework for appropriateness in surgical care: Reviewing past approaches and looking ahead to patient-centered shared decision making. Anesthesiology 2015 Dec;123(6):1450-1554.
    Published July 19, 2020
  • SUO 2019: Implementation of Standard Opioid Prescribing Schedules Following Urologic Surgeries Reduces Opioid Prescriptions Without Change in Patient Reported Outcomes

    Washington, DC ( There is an increasing recognition that postoperative opioid prescriptions are contributing to the opioid crisis in the United States. This is in part due to the diversion of excess opioid medications, but also in part due to the new development of chronic opioid dependence among postoperative patients themselves, which is observed at a rate of 1-6% depending on how it is defined.

    Published December 7, 2019