November 2019 Edition Vol.11, Issue 11

The Importance of Patient-Reported Outcomes (PROs) in Value-Based Care Models

By Dr. Ethan Basch and Gena Cook

The Value of Patient-Reported Outcomes (PROs)

Patient-reported outcomes (PROs) comprise clinical information reported directly by patients about how they feel and function – for example, symptoms, performance status, distress, and quality of life. Patient reports can also capture non-clinical information such as satisfaction with care, social determinants of health, and financial toxicity. When collected during routine cancer care, this information can be used for multiple purposes by different stakeholders (Figure 1).

PROs are collected using questionnaires (sometimes called “instruments”) that preferably have undergone scientifically rigorous testing to assure that questions are clear to patients, that they measure what we think they are measuring (i.e., are “valid”), that they are reliable, and that scores change as we might expect when patients’ health status changes (i.e., “sensitive”). PRO questionnaires were historically administered by pencil and paper, but currently the approach of choice is electronic, for example via web or downloadable app (Figure 2). These questionnaires may be administered to patients receiving active treatment on a regular basis, for example every cycle of therapy at clinic visits, or every 1, 2, or 3 weeks from home between visits. Cancer survivors may be asked to complete questionnaires less frequently for surveillance. A number of different approaches are reasonable, depending on clinical context, as described below.

Scientific research demonstrates that clinicians miss approximately half of patients’ symptoms during cancer treatment.1,2 As a result, patients can suffer due to poor symptom control, treatments may be delayed or missed, and preventable emergency room visits and hospitalizations occur. It is known that poorly controlled symptoms drive preventable ER visits (e.g., dyspnea, dehydration, pain, nausea/vomiting, diarrhea, constipation, fatigue).3,4

Most patients with cancer (80% or more) are willing and able to regularly self-report PROs during treatment. Studies show that monitoring symptoms using PROs makes clinicians more aware of symptoms, makes patients feel more connected to their care team, improves communication and satisfaction with care, and improves quality of life.5,6 Recent high profile presentations at ASCO and publications in JAMA show that PRO monitoring lengthens the time patients tolerate cancer treatment, reduces ER visits, detects recurrences earlier, and improves survival (Figure 3).7,8

Workflow Considerations of Implementing PROs in Clinical Practice

There are multiple administrative, technical, and clinical workflow considerations when implementing PROs in a practice. A governance committee or process for making key operational decisions is advisable including salient stakeholders such as clinicians, administrators, patient representatives, and information technology personnel. From a technical standpoint, a PRO software system should include an interface for patients to self-report (either linked to the electronic health record or free-standing); automated e-reminders to patients to self-report; automated e-alerts to clinicians when severe or worsening symptoms are reported by patients; and ability to visualize PRO values longitudinally. The ability to aggregate data across subpopulations and link this information to other clinical data points is also desirable, for example, to view patterns of symptoms among patients receiving systemic therapy for metastatic breast cancer.

In terms of clinical workflow and personnel, a planned quality improvement process for implementing PROs into workflow can be helpful, that includes preparing a clinic, identifying clinical “champions,” and supporting administrative staff to conduct patient training and monitoring, care team training, and project monitoring. Putting this all together, Figure 4 depicts a model for bringing electronic PROs into workflow for symptom monitoring.

From the patient and feasibility perspective, to assure successful uptake and adherence with self-reporting, it should be clearly communicated to patients from the start that PROs are important to the care team. Invitations to patients to enroll and self-report should optimally come from a team member they know. At visits, patients should be reminded of the importance of self-reporting. And perhaps most importantly, clinicians should review the PRO data and communicate to patients that the team is using the PROs to guide care.

The most challenging aspect of implementing PROs into clinical practice is creating a seamless process to view PROs as they come into the practice. Navigating Cancer, a comprehensive patient management software solution, has found the most effective model is a centralized triage call center where patients can call a triage nurse directly to report a side effect that needs immediate attention. A recent study looked at two practices using Navigating Cancer’s triage workflow solution: The Center for Cancer and Blood Disorders in Fort Worth, Texas and Northwest Medical Specialties in Tacoma, WA. Results of the study demonstrated a 7 percent reduction in emergency room visits due to symptom management though standardized pathways.9 Once this system is in place, the triage nurse can also monitor patients who electronically report side effects through a PRO program. The PROs from these patients can then be risk-stratified based on severity so that triage nurses can call and manage the patients with the highest needs, while monitoring other patients who may need assistance at some point.

Capturing PRO data through an electronic system can help enhance communication between providers and patients, improve care quality, and lead to better outcomes. Patients who feel they have a more active role in their care often are more engaged in their overall treatment.10 Oral cancer treatments are becoming more common as more new treatments are approved, but oral adherence has proven to be challenging in cancer care.11 Electronic PROs allow care teams and providers to be better informed about a patient’s health between visits. PRO programs often collect side effect and oral medication adherence reports from patients. These patient reports can then be documented and risk-stratified within a technology platform, allowing patient care teams to monitor and manage patients quickly and efficiently. In the study that reviewed the use of Navigating Cancer’s patient relationship management platform, clinics risk stratifying patients through their triage system were able to help patients avoid unnecessary emergency room visits through better symptom management.9

For more information on considerations for implementing PROs in practice, there are two helpful Users’ Guides which are available for free online: 1) the User’s Guide to Implementing Patient-Reported Outcomes Assessment in Clinical Practice from the International Society for Quality of Life Research,12 and 2) the Users’ Guide to Integrating Patient-Reported Outcomes in Electronic Health Records supported by the Patient-Centered Outcomes Research Institute.13

PROs Can Be an Important Tool for Value-Based Cancer Care

PROs can be a necessary element in routine cancer care to help practices succeed in a value-based care landscape. Research has validated that capturing PROs can increase overall 1-year survival and extend time on therapy by up to 5 months.7 Patient participation is important, and a majority of cancer patients have stated they are willing to self-report PROs during treatment. The use of PROs may help improve communication between the patient and provider. Using an electronic PRO system can reduce barriers for patients to report symptoms and communicate with their care team more by giving them a simple tool to use on a regular basis. Patients may be more likely to report symptoms, even some that seem less severe to them, during treatment that allows their care team to closely monitor or intervene if necessary.

As more practices engage in value-based care agreements and explore comprehensive patient management solutions as the new standard for cancer care, PROs have the ability to seamlessly integrate in the workflow. PROs are important to the mission of value-based care to improve the patient experience, care quality, and patient outcomes.

About the Contributors

Ethan Basch, MD, MSc, FASCO
Dr. Basch is a medical oncologist and distinguished professor at the University of North Carolina in Chapel Hill. He leads a research program focused on developing patient-reported outcomes strategies for cancer drug development and for routine care symptom control. He has published more than 250 articles including key papers on PROs in JAMA and the New England Journal of Medicine. His group developed the PRO-CTCAE for the National Cancer Institute, and established that symptom monitoring with PROs improves overall survival for patients with cancer. He serves on the Board of Directors of ASCO and as an Associate Editor for JAMA.

 

 

Gena Cook
Gena is the President and Founder of Navigating Cancer. She has spent her career in oncology launching and growing technology, distribution, healthcare services, data, and pharmaceutical products. Gena founded Navigating Cancer with a vision to leverage technology to improve patient care in the era of precision medicine and value-based care. She led the company as the CEO for the first 10 years and now leads innovation and corporate development to accelerate the company vision.

 

 

 

Navigating Cancer
Navigating Cancer is the leading Patient Relationship Management technology and solutions company focused on improving the patient experience, delivering more effective care management and enabling oncology care innovation. With over 1,700 providers adopting our platform, Navigating Care is the most broadly deployed patient management platform in oncology. Our solutions improve clinical workflows, oncology content, and data capabilities together to empower more personalized care, increase performance, and deliver insights that help improve care for cancer patients. For more information, please visit www.navigatingcancer.com or follow us on Twitter @navcancer.

References:

  1. Eivor A Laugsand, Mirjam AG Sprangers, Kristin Bjordal, Frank Skorpen, Stein Kaasa, Pål Klepstad. Health care providers underestimate symptom intensities of cancer patients: A multicenter European study. Health Qual Life Outcomes. 2010;8:104.
  2. Basch E, Jia X, Heller G, Barz A, Sit L, Fruscione M, Appawu M, Iasonos A, Atkinson T, Goldfarb S, Culkin A, Kris MG, Schrag D. Adverse symptom event reporting by patients vs clinicians: relationships with clinical outcomes. J Natl Cancer Inst. 2009;101(23):1624-1632.
  3. Panattoni L, Fedorenko C, Greenwood-Hickman MA, Kreizenbeck K, Walker JR, Martins R, Eaton KD, Rieke JW, Conklin T, Smith B, Lyman G, Ramsey SD. Characterizing Potentially Preventable Cancer- and Chronic Disease-Related Emergency Department Use in the Year After Treatment Initiation: A Regional Study. J Oncol Pract. 2018 Mar;14(3):e176-e185. doi: 10.1200/JOP.2017.028191. Epub 2018 Feb 8.
  4. Mayer DK, Travers D, Wyss A, Leak A, Waller A. Why do patients with cancer visit emergency departments? Results of a 2008 population study in North Carolina. J Clin Oncol. 2011 Jul 1;29(19):2683-2688.
  5. Kotronoulas G, Kearney N, Maguire R, Harrow A, Di Domenico D, Croy S, Macgillivray S. What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. J Clin Oncol. 2014 May 10;32(14):1480-1501.
  6. Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, Selby PJ. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol. 2004;22(4):714-724.
  7. Basch E, Deal AM, Dueck AC, et al. Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment. JAMA. 2017 Jul 11;318(2):197-198. doi: 10.1001/jama.2017.7156.
  8. Denis F, Basch E, Septans AL, et al. Two-Year Survival Comparing Web-Based Symptom Monitoring vs Routine Surveillance Following Treatment for Lung Cancer. JAMA. 2019 Jan 22;321(3):306-307. doi: 10.1001/jama.2018.18085.
  9. Barkley R, Soobader MJ, Wang J, Blau S, Page RD. Reducing Cancer Costs Through Symptom Management and Triage Pathways. J Oncol Pract. 2019 Feb;15(2):e91-e97. doi: 10.1200/JOP.18.00082. Epub 2018 Dec 21.
  10. Committee on the Learning Health Care System in America; Institute of Medicine; Smith M, Saunders R, Stuckhardt L, et al., editors. Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. Washington (DC): National Academies Press (US); 2013 May 10. 7, Engaging Patients, Families, and Communities. Available from: https://www.ncbi.nlm.nih.gov/books/NBK207234/
  11. Thomas SA, John T, Criner E, Nguyen TM. Challenges to Oral Chemotherapy Adherence. US Pharm. 2019;44(6)HS-9-HS-12.
  12. International Society for Quality of Life Research (prepared by Aaronson N, Elliott T, Greenhalgh J, Halyard M, Hess R, Miller D, Reeve B, Santana M, Snyder C). User’s Guide to Implementing Patient-Reported Outcomes Assessment in Clinical Practice, Version: January 2015. Available at: http://www.isoqol.org/UserFiles/2015UsersGuide-Version2.pdf
  13. Patient-Centered Outcomes Research Institute (edited by Snyder C and Wu A). Users’ Guide to Integrating Patient-Reported Outcomes in Electronic Health Records: Version: May 2017. Available at: https://www.pcori.org/sites/default/files/PCORI-JHU-Users-Guide-To-Integrating-Patient-Reported-Outcomes-in-Electronic-Health-Records.pdf

Post a Comment

OBR Archives

To view previous issues of OBR green you can visit our archives. The entire library of OBR green articles is searchable.