Thoughts Around Developing Precision Supportive Care

Michelle Kirschner MSN, RN, ACNP, APRN-BC

This article is an overview of my post submitted to the ASCO Community of Practice to Marianne Sarcich’s response to Dr. Michael Jefford after he submitted his article to the community.??

Nicole L. Stout et al. Implementing a Clinical Pathway for Needs Assessment and Supportive Care Interventions. JCO Oncol Pract 0, OP.23.00482

DOI:10.1200/OP.23.00482

Here is Marianne’s response:?

“As a patient and patient advocate, what I see is care teams deeply focused on the disease and not the psychosocial fallout. To the point where I had to find the programs that existed in my cancer center on my own. Including a social worker. It was never offered to me. I never heard the term survivorship from my care team. I discovered it after diagnosis. And I personally was emotionally blindsided that cancer wasn't something you walked away from, like a C-section? That the after effects lasted and lasted. And what I see in the peer support group I run is this is very common. Unfortunately, many patients don't know how to navigate even the disease and treatment, let alone psychosocial support or other types of support like Financial. Many don't even know that they are "allowed" to ?contact their care team off hours when they are physical pain. There are a lot of gaps here. But what I love is this conversation. It's the only way to take the steps towards closing the gaps.”

Marianne- I really like your posting and how you used your advocacy voice to let others know that the need is real and that our current insufficient has consequences. You have inspired me to write the response below.? I think the article on Team Medicine says it best.??

“Current models of survivorship care that begin postoncology may create harm, excess suffering, and lost opportunities for toxicity mitigation, disability prevention, participation in cutting-edge research, and long-term health optimization.”

Dr. Jefford and fellow COP members,

I appreciate the conversation that has been generated by the article submitted by Dr. Jefford.? This work is vital and important information focused on creating practical pathways to comprehensive supportive care.? The conversation and sharings so far have been very insightful and reflect much of what I have experienced as in my roles of oncology survivorship and supportive care clinician and? Director of Program Development for Survivorship and Supportive Care at the University of Cincinnati Cancer Center until Sept of 2023.? In that role and my current position as Director of Program Development at the Cancer Survivorship Provider Network? I have focused on the idea of “Precision Supportive Care.”? Our supportive care ambitions should mirror our treatment goals.??

I’m not a researchers but rather an APP with lived experience and extensive knowledge base through working with teams to build out supportive care such as psychosocial support and collaborative care model of mental health, addressing practical needs, cancer exercise, nutrition, smoking cessation, sexual health, cancer rehab (PT, OT, SLP - cognitive and H&N focused, return to work interventions, PFFT for males and females), creating a Survivorship navigation role and partnering with general navigators, longitudinal cancer cognitive care (and providing cognitive care) and a survivorship clinic where a general population of patients could see me from day of diagnosis including those with metastatic disease and living with cancer as a chronic illness.?

I have been following the conversations around survivorship and supportive care on social media (X and LinkedIn) and other professional organizations.? I’m sure everyone in this Community of Practice is fully aware of the complexity of supporting care survivors from the day of diagnosis. Many individuals enter their cancer experience with pre-existing mental and physical conditions that will complicate their cancer care.? In addition there are specific populations based needs along with cultural and geographic inputs .? Needs assessments and navigational services are all important parts of supportive care but I’m worried that we have completely missed some of the other vital elements like the role of highly trained dedicated clinicians that can lead our supportive care teams and creating an integrated supportive care assessment and internal pathways to address the wide variety of patients and caregivers that enter our cancer centers from day of diagnosis.? These pathways are very complex and risk stratification protocols need to be developed with pathways.? We also need to train up clinicians that have a the wide range of knowledge that can responsibility to assess/triage items such as collaborative mental health care, geriatric and especially cognitive assessment prior to treatment, functional assessment to partner with prehab/PM&R and physical therapists, sexual healths and assisting with lifestyle goals (diet, exercise, sleep, etc)? through motivational interviewing and coaching to name a few items. I have found that my patients had so many issues that I had to work with them to identify a few with the greatest QoL impact so that we could develop a treatment plan for only 2-3 issues and then move on to other items over time.? This ensured that survivors would not become overwhelmed.

This type of complex system development cannot be created by randomized clinical trials only.? These systems need to be co-developed with survivors/caregivers, clinicians and researchers on the ground with quality improvement implementation processes like those outlined in the article..? I appreciate that the authors, who are some of my favorite people like Catherine, Nicole, Michael and Ray, mentioned using the AHRQ “Quality Indicator Toolkit” and the importance of showing ROI. However, I believe that we should not be asking cancer programs to do this complex work on their own.? Through my role in the CSPN and? meeting with many providers in cancer centers that are trying to build supportive care programs, most lack experience and mentorship resources to accomplish this goal. We need a mentorship role created for this work.

Lastly, I think that there is “best practice” in supportive care and I’m concerned about promoting needs assessment in resource limited settings and referral to community based organizations and thinking that this is considered sufficient. CBOs are an important resource but I do not think we expect them to actually manage diagnoses such as cognitive impairment, severe anxiety/depression, complex pain, etc.? I’m not sure the statement that “many patients and their caregivers simply need guidance and information, so they can optimally self-manage their own health” is correct.? This idea is an enormous assumption and lacks sufficient data.? The NCCS yearly survey shows the high levels of treatment related effects experienced by survivors.? I believe we need a call to action for the many patients that have complex needs and lack of access to supportive care clinicians to assist them in their journey.? We might have to create stop gap programs right now but our goal as a Survivorship COP is to lead towards real world progress.? This can be accomplished through Learning Health Network to lead the way in implementation of needs assessments, TEAM Medicine and other comprehensive models of care and demonstrated value so that every person has access to the precision supportive care they require.? There are real world examples in other diseases how Learning Health Networks have started with small pilots and changed standards of care along with outcomes.? It has been shown that it takes nearly 17 years to see outcome benefits from research in clinical care but LHNs can show outcomes in 2 years.? Why have we not leveraged this tool?? This paper is an excellent starting point for a LHN.? As everyone joins together at ASCO, I hope that making progress in supportive care is part of the conversation and I would be happy to join with everyone in this effort. I will miss seeing everyone as ASCO and I definitely have FOMO!

Best,

Michelle?

Here is visual of the TEAM Medicine Article for reference: