2014 Palliative Care Symposium Preview: Patient-Reported Outcomes

2014 Palliative Care Symposium Preview: Patient-Reported Outcomes

Guest Commentary

Aug 27, 2014
By Jeannine M. Brant, PhD, APRN, AOCN

I’m looking forward to the 2014 Palliative Care Symposium in Boston. Our session on "The Three Ms of Symptom Science—Mechanisms, Measurement, and Management"will highlight some of the cutting-edge information about symptoms. I’ll be talking about the third M, management, and I’ll focus on patient-reported outcomes (PROs) and novel electronic systems which facilitate PROs. These electronic tools are truly instrumental in driving this science forward. It’s all about integrating patients’ perspectives into clinical practice and using tools that measure patients’ experiences of their health.

Here’s an example of a patient scenario that occurred last week. The patient was newly diagnosed with cervical cancer, a young woman with small children still at home. When she filled out the distress thermometer in the waiting room she reported no distress. Following this paperwork, we enrolled her into our Patient-Reported Outcomes study, which uses a novel electronic platform to measure multiple symptoms and then creates a plan of care that is individualized for the patient. She proceeded through each question on the iPad and truly “spilled” her thoughts onto the keyboard. She rated fatigue at 8 out of 10, pain at 7, sleep disturbance at 8, and anxiety as severe. She also reported concerns about her sexuality. Her three concerns for the provider visit were managing pain, finding out when radiation therapy would start, and understanding her prognosis.

As our supportive care team was reviewing the patient’s data, we had to ask ourselves, “Why didn’t the distress thermometer capture this patient’s distress? And what was it about the new electronic tool that facilitated this patient’s expression of key symptoms?” These are some of the research questions that exist about PROs. Capturing patient symptoms is critical in developing an appropriate plan of care. During the session, I will be discussing some of the research being conducted in this area, and I’ll be demonstrating some systems that are being developed to facilitate patient reporting. I’m also excited to learn from the audience about methods and systems used to promote PROs. It should be a great way to start the meeting with rich discussion on this important topical area. I hope you’ll join us on October 24-25.

Jeannine M. Brant, PhD  Jeannine M. Brant, PhD, APRN, AOCN, is an oncology clinical nurse specialist and nurse scientist at Billings Clinic, a part of the Mayo Clinic Network. She is a member of the 2014 Palliative Care Symposium Program Committee. Her research interests include pain and symptom management, pain care quality, and patient reported outcomes. Her work involves the spread of palliative care throughout the United States and in the Middle East.

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Comments

Michael Jordan Fisch, MD, MPH, FASCO

Sep, 01 2014 12:23 PM

Jeannine, this will be a provocative and very engaging session at the Palliative Care in Oncology Symposium.  It is part of the opening educational session and it will be a great way to start the meeting. The example you give in your blog is so familiar in cancer care; the frequent discordance that occurs in attempts to elicit patient and family concerns and experience with toxicities and symptoms.  For example, a patient may reflect a "zero" severity depression or anxiety on a screening questionnaire (or answer "not at all"), and then be found to have very obvious depression and readily agree that depression is a problem.  This creates a paradox in the documentation as the patient without depression is then diagnosed with depression and may improve dramatically.  Picture the next visit when the patient rates the severity of depression as "3" and both the patient and clinician feel gratified about the improvement.  Of course, in the longitudinal evaluation of the patient-reported outcome (PRO) measure, the patient went from a score of "0" to a score of "3" in consecutive visits.  Perhaps the payor is perplexed at the use of resources to treat a patient for depression when the PRO showed no depression, and the researcher is perplexed that the patient was ineligible for a depression study even though there was obvious depression, and the system reflects a patient who actually worsened despite appropriate assessment and treatment.

This is just one of many interesting elements to discuss about the routine use of PROs in oncology.  More information about the meeting program is available at www.pallonc.org. The early registration deadline is midnight on Wednesday, September 17th for the 2014 Palliative Care in Oncology Symposium being held in Boston on Friday/Saturday October 24th-25th.

Deb Maskens

Sep, 02 2014 2:38 PM

As a patient and now a cancer patient advocate, I have to admit to consciously down-grading and minimizing my side effects on a clinical trial because I desperately wanted to stay ON the trial (there were few to zero other options at the time). And so, the game began to present the best quality of life possible to my oncology team, but to scramble like mad in the background (GP, Community Pharmacist, and with other patients) to figure out how to best manage the toxicities.

Was this good for the trial data? Obviously not, but we need to remember the mindset of the patient and the motivation to disclose or withhold information. I was not trying to mess up the data, but was just trying to stay alive long enough to raise my 2 children. I knew enough that if I was really upfront about my QoL on drug, I would "be talked into" a break or would be "booted off" the study. It felt like a test at each clinic visit and I desperately needed to pass until there was a better treatment option available.

ideally we would have a way to capture real patient experiences without any fear of the consequences -- a place to write what is really going on... And report that to regulators, HTA agencies, payors.

 

Michael Donald Brundage, MD

Sep, 08 2014 10:37 AM

It’s great to hear about the upcoming Palliative Care in Oncology Symposium and to have some sneak previews of the issues that will be addressed in these important and engaging sessions.  We are commenting in support of the Symposium, and to mention some relevant research that we are currently undertaking and that may be of interest to the readers of this exchange. 
Our research team is conducting a systematic evaluation of how patients’ PRO reports, once measured in routine clinical practice, are communicated most effectively back to the patient and to the team of health care providers.   The research is designed as a mixed-methods project, using both qualitative and quantitative approaches to determine which formats are most effective in communicating PRO scores accurately and efficiently.  Our goal is to provide guidance for ‘best practices’ in PRO communication, and in doing so, support the many complicated issues associated with measuring PROs in complex situations like those mentioned above.  The research is funded by PCORI (the Patient-Centered Outcomes Research Institute), (PCORI, www.pcori.org) and is led by a multidisciplinary team comprising of a radiation oncologist, health services researcher, sociologist, and patient advocate.  We are also guided by an advisory board of international experts including physicians, researchers, nurses, caregivers, and cancer survivors. This project has been challenging but rewarding so far!  Some initial results were presented at ASCO 2014, and further results will be presented at the International Society for Quality of Life Research (ISOQOL) in October.  
The issues raised in this commentary are really important, and clearly don’t have easy solutions.  Similar issues have been the subject of many discussions and presentations at ISOQOL, who undertook a recent educational initiative to create “user’s guides” for utilizing PROs in clinical practice.  These guides are available on the ISOQOL website (http://www.isoqol.org/research/isoqol-publications) and are worth checking out! Best wishes for a productive and successful symposium. 

Michael Brundage and Elissa Bantug on behalf of Claire Synder, Katherine Smith, Emily Little and colleagues

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