Survivorship Care for People Affected by Advanced or Metastatic Cancer: MASCC-ASCO Standards and Practice Recommendations

Dr. Raymond Chan and Dr. Larissa Nekhlyudov share the newest standards and practice recommendations from MASCC and ASCO on survivorship care for people with advanced or metastatic cancer. They discuss highlights of the standards across seven domains: person-centered care, coordinated and integrated care, evidence-based and comprehensive care, evaluated and communicated care, accessible and equitable care, sustainable and resourced care, and research and data-driven care. Drs. Nekhlyudov and Chan also comment on the impact of these standards for clinicians and for patients with advanced and metastatic cancer and the goal of providing high-quality evidence-base survivorship care for all patients. Read the standards, “Survivorship Care for People Affected by Advanced or Metastatic Cancer: MASCC-ASCO Standards and Practice Recommendations” at www.asco.org/standards.

TRANSCRIPT

These standards, recommendations, and resources are available at https://asco.org/standards. Read the full text of the standards and review authors’ disclosures of potential conflicts of interest in the JCO Oncology Practice, https://ascopubs.org/doi/10.1200/OP.23.00716. 

Brittany Harvey: Hello and welcome to the ASCO Guidelines podcast, one of ASCO's podcasts delivering timely information to keep you up to date on the latest changes, challenges, and advances in oncology. You can find all the shows, including this one, at asco.org/podcasts.  

My name is Brittany Harvey, and today I'm interviewing Dr. Larissa Nekhlyudov from Brigham and Women's Hospital and Harvard Medical School, and Dr. Raymond Chan from Flinders University, authors on, “Survivorship Care for People Affected by Advanced or Metastatic Cancer: Multinational Association for Supportive Care in Cancer (MASCC) and American Society of Clinical Oncology (ASCO) Standards and Practice Recommendations”. Thank you for being here, Dr. Nekhlyudov and Dr. Chan.

Dr. Raymond Chan: Thank you for having us.

Dr. Larissa Nekhlyudov: Great to be here.

Brittany Harvey: Then, before we discuss these standards, I'd like to note that ASCO takes great care in the development of its guidance products and ensuring that the ASCO conflict of interest policy is followed through each panel. The disclosures of potential conflicts of interest for the expert panel, including the guests on this episode today, are available online with the publication of the standards in the JCO Oncology Practice, which is linked in the show notes. 

So then, to dive into the content of the standards and recommendations. First, Dr. Chan, could you provide both an overview of the scope and purpose of these joint MASCC-ASCO standards and practice recommendations?

Dr. Raymond Chan: Thank you, Brittany. First of all, as outlined and introduced by yourself, I would like to acknowledge that this is a great collaboration between the Multinational Association for Supportive Care in Cancer and ASCO. And if you may indulge me for a minute, I would like to give you a little bit of background of how this all started. It was in 2019 when I came across an article written by Ms. Terry Langbaum and Dr. Thomas Smith, who wrote a piece in the New England Journal of Medicine outlining the insufficient work and research done to advance care for people with incurable, long-term, metastatic cancer survivorship. And both Terry and Tom were living with metastatic cancer, and with their lived experience, they provided a new level of meaning to our work. And subsequently, in honor of Terry Langbaum, who is a renowned and esteemed hospital administrator who worked in cancer care, Dr. Thomas Smith and myself created the Terry Langbaum Cancer Survivorship Fellowship and appointed Dr. Nicholas Hart to complete this work.  

Within this work, we aim to develop international standards and practice recommendations to guide care for people living with treatable but incurable, metastatic, and advanced cancer. In this work, we conducted an extensive systematic review involving 81 studies, 17 guidelines, and framework documents, gathering the wisdom and consensus from 77 experts from 33 countries around the globe. Together, we reached consensus on 45 recommendations that we hope will be helpful for the clinical care community in improving care, experiences, and outcomes for people living with metastatic cancer.

Brittany Harvey: Excellent. Thank you for providing this essential background information and describing the impetus for this project. 

Then, as you discussed, Dr. Chan, these standards and recommendations have over 45 recommendations within them. So I'd like to review each of those key points from each section. This document provides these standards and practice recommendations across seven domains. So to start with that first domain, Dr. Chan, what are the key points you'd like to highlight regarding person-centered care? 

Dr. Raymond Chan: Sure, Brittany. Now, without repeating what is in the document because I hope that this podcast can lead you to that document and for you to read it in detail, it is really around a comprehensive set of principles that experts felt were important to ensure that patients themselves participate in the care as much as possible. It is around respecting their agency and making sure that their clinical and psychosocial care needs associated with their metastatic cancer diagnosis are considered and addressed. 

Brittany Harvey: Absolutely. Thank you for providing those key points regarding person-centered care. So, moving into that next section, coordinated and integrative care, what points would you like to highlight there?

Dr. Raymond Chan: Thank you, Brittany, for the question. The standards and recommendations within this section are really around articulating the coordination, navigation, and the multidisciplinary care team approach requirements for this population. In particular for people living with metastatic or advanced cancer, it is not a given that they will be able to access survivorship care services or palliative care services. And a lot of the time, we know that care access is around the resource setting. And a lot of the time, palliative care services may not necessarily be able to cover people living with relatively longer prognosis, such as this population, the longer term metastatic and advanced cancer population. Another point is around transition and the shared care arrangement between the oncology team, survivorship care clinicians where available, and the palliative care team. Once again, these recommendations really articulate the importance of a well-coordinated, integrated approach for these patients.

Brittany Harvey: Absolutely. Those points that you just highlighted are important for care for the whole patient. 

So then, next, Dr. Nekhlyudov, I'd like to turn to you for the next couple of sections. Could you review what the highlights are for the next section: evidence-based and comprehensive care?

Dr. Larissa Nekhlyudov: Yes. Thank you, Brittany. This standard emphasizes that people affected by advanced or metastatic cancer receive the most up-to-date, evidence-based, comprehensive, multidisciplinary, and interprofessional survivorship care and receive it in programs that continuously evolve their approach as guided by evidence. So as such, it is important that these survivorship programs are informed by ongoing professional development, including educational programs for healthcare professionals, that also includes active contributions by those affected by advanced or metastatic cancer. The other piece is that people affected by advanced and metastatic cancer should receive comprehensive care that encourages and supports informed decision-making in order to promote health, manage disease, and reduce stress.

Brittany Harvey: Definitely, those are very important points regarding care of the patient. 

So then, moving into the fourth domain, Dr. Nekhlyudov, what are the key points for evaluated and communicated care?

Dr. Larissa Nekhlyudov: So the famous line is, "What can’t be measured can’t be improved." And so it is important that clinicians routinely and systematically evaluate and monitor supportive care needs and provide appropriate referrals to relevant survivorship care services and healthcare professionals. In order to do that, we need to establish multidirectional communication systems that take into account communication with patients and communication across healthcare professionals involved in their care. Effective communication, of course, needs to be timely, it needs to be clear, effective, respectful, and appropriate. We all know that communication is challenging across cancer care, but it may be particularly so in this specific patient population. For example, in communicating with patients, cancer care clinicians may be comfortable communicating with those with early-stage cancers or patients with early- stage cancers. And may also have had training to communicate with those patients nearing the end of life. But as we already mentioned, those affected by advanced or metastatic cancer may have different needs and as such, it is important that there is additional training for clinicians to address survivorship care needs among these individuals and their caregivers. 

And then, in addition to patient-clinician communication, to enable timely communication and collaboration between multiple healthcare providers who may be involved in caring for these patients, enhanced and secure communication strategies are needed. And as with everything else, it's important that healthcare settings engage in service evaluations and quality improvement activities to continue to examine what works, what does not, and make changes that are needed.

Brittany Harvey: It is important that these patients with metastatic or advanced cancer have their unique needs met by providing care and appropriate communication to them. 

So then, into the next section. Dr. Nekhlyudov, I believe Dr. Chan mentioned this briefly already in talking about being able to access care as part of integrative care. But what is recommended regarding accessible and equitable care?

Dr. Larissa Nekhlyudov: Right. Absolutely. I mean, as with any healthcare or cancer care, the standard emphasizes that cancer survivorship care for all people affected by advanced or metastatic cancer is not only comprehensive but also accessible. So affordable, acceptable, available, appropriate, and equitable. And the key is that it does not vary based on someone's personal, cultural, or religious factors. It is important that health workforce diversity and cultural awareness training with the development and provision of culturally and linguistically appropriate resources, that these can help healthcare professionals better understand and cater to the unique needs of the cancer survivor and the caregiver populations. We also need to develop metrics to assess the evaluation  and improvement and make sure that supportive care options are innovative, inclusive, and targeted towards eliminating disparities. 

Some of the work that Dr. Chan has otherwise led is looking at provision of telehealth and virtual care for cancer survivors. So particularly for this patient population, it is important to examine the potential benefits of virtual healthcare so that these patients who may have a lot of different needs, physical challenges, mental health challenges, caregivers, that we don’t necessarily bring them to the healthcare setting and can potentially provide them the care that they need. And the last thing that I would like to point out with respect to this is that people affected by advanced or metastatic cancer may face additional challenges particularly returning to work in some capacity and should be supported by advocacy groups, or consumer groups as they are often called internationally, that advocate for accessible and equitable care and then work with specific personnel to access employment, financial and legal assistance that they may need. 

Brittany Harvey: Those are important for providing both inclusive and individualized care to every patient who a clinician may see. 

So then following those points, what is recommended and what are the key points you’d like to highlight regarding sustainable and resourced care?

Dr. Larissa Nekhlyudov: Thanks, Brittany. This is a really important point, and not to take away from any of the other standards, but in order for us to provide ongoing high quality cancer survivorship care for people affected by advanced and metastatic cancer, we need to have a sustainable and adequately resourced approach to do so. So, these standards acknowledge that not all countries or healthcare systems have access to sufficient resources. As such, supportive care may need to utilize a step-care or resource stratified approach that offers the least resource-intensive care that aligns with the needs of the patient, but then also takes into account resources that are available, but really the care should not stop there. 

Survivorship care interventions and models of care should be cost-effective yet clinically relevant and meaningful and need to have the adequate financial investment by the healthcare systems. So healthcare settings providing survivorship care for those affected by advanced and metastatic cancer have to be properly resourced in order to provide high quality ongoing care. And this includes intentional planning for support services, and  where healthcare settings provide these programs with adequate level of human resources, equipment, facilities, and leadership who value support, facilitate, and appropriately invest in such care. And as we mentioned before, it’s always important to continue to evaluate what is being provided, what is being offered, sort of what are the return on investment metrics in order to continue to evolve the programs to serve the needs of the population. 

Brittany Harvey: Understood. I appreciate you providing highlights across these past couple of domains.

So then to turn to the last domain, Dr. Chan, what is recommended regarding research and data-driven care?

Dr. Raymond Chan: So the panel actively advocated for cancer registries to enable population-wide surveillance of the incidence and prevalence of people with advanced or metastatic cancer. Knowing the number of people with advanced or metastatic cancer is extremely important for care planning. We also advocated for the active involvement of people affected by advanced or metastatic cancer to participate in the co-design of research so that we can make sure that our research better meets the needs or end-users and enhance the rigor, relevance, reach, and impact of survivorship research. 

The last point I would like to highlight is that a number of survivorship trials out there only limit the population or the focus of the trial being on early stage disease, people treated with curative intent. And within this standards and principles, we advocated for research trials to explicitly include people affected by advanced or metastatic cancer in the clinical trials and trying to address also the barriers that impede people from enrolling or participating at all levels. 

Brittany Harvey: Thank you both for reviewing these key points, standards, and practice recommendations across these seven domains.  

These standards and recommendations cut really across all aspects of care for people impacted by advanced and metastatic cancer. Dr. Nekhlyudov, in your view, what is the importance of these standards and how they will impact clinicians?

Dr. Larissa Nekhlyudov: Thank you for that question, Brittany. The MASCC-ASCO standards were developed, as we already mentioned, to promote the provision of high-quality, evidence-based survivorship care for people with advanced or metastatic cancer emphasizing the need for care that is person-centered, coordinated and integrated, evidence-based and comprehensive, evaluated, and communicated, accessible and equitable, sustainable and resourced, as well as research and data-driven. For clinicians, these standards and practice recommendations provide a critical resource in order to facilitate tailored and effective care for people living with advanced or metastatic cancer across disciplines and settings. 

As we know, and much of it is due to the efforts of ASCO, cancer care is always changing resulting in changing prognoses. As such, people diagnosed with cancer in the past that had poor prognosis are now living and are living longer. And so diagnoses that fall into this specific category of patients that we’re discussing here today will continue to evolve. And likewise, advanced cancer is less clearly defined for other cancer such as hematologic or CNS malignancies, but these survivors may face similar issues and challenges.  

So overall, applying these standards will help provide survivorship care to these patients. And the important piece is that what we hoped to achieve with these standards is that when we consider survivorship care, we are not only applying it to those who have early stage disease. We’re not applying it only to those whose disease has been “cured.” We’re not applying it to those who have been deemed disease-free or those who have completed treatments. We really need to make sure that clinicians understand the challenges experienced by often disregarded or forgotten population of cancer survivors and yet acknowledge the ever changing landscape of cancer survivors and appropriately apply these survivorship standards for people affected by advanced or metastatic cancer. And I think as Ray would probably say as well, we should focus on including rather than excluding people with cancer, all cancers, from survivorship services and programs. 

Brittany Harvey: Definitely. This is an important population with often unrecognized or unmet needs, and the goal of these standards, as you’ve mentioned, is to provide a better quality survivorship care for patients with advanced and metastatic cancer.  

So that leads nicely into my final question for you, Dr. Chan. In your view, how do these standards and recommendations impact people affected by advanced or metastatic cancer?

Dr. Raymond Chan: As we continue to promulgate these standards of recommendations, I believe that patients will benefit from these standards in three ways. 

First, as clinicians, researchers, and service planners continue to improve care as per outlining the standards, patients are going to indirectly benefit from it. It is meant to lead to better care, better experiences, and better outcomes. 

Secondly, it is around the expectations of care. Many of us here would know that if we don’t expect that care, it is unlikely that we would go and try to access it. And so it is extremely important that patients know what to expect. So now that I have been diagnosed with advanced or metastatic cancer, what does good care look like? So in the past, there are a number of pallaiative care standards whereby people are thinking, “Do I need palliative care? What does good palliative care look like?” Their set of standards. And now, these standards would enable patients to develop that expectation around what good care looks like. 

Thirdly is around the patients, the family units, and their navigators or their care networks to advocate for themselves, to advocate for the patient, to be able to access that care from the care team. So we hope that as we continue to promulgate these standards, that benefit would be translated into the real world for people affected by advanced or metastatic cancer.

Brittany Harvey: Excellent. We definitely hope that this improves care for all patients impacted by advanced and metastatic cancer.  

So, I want to thank you both so much for this important work to develop these recommendations and standards. And thank you for taking the time to speak with me today, Dr. Nekhlyudov and Dr. Chan.  

Dr. Larissa Nekhlyudov: Thank you. Great to be here.  

Dr. Raymond Chan: Thank you.  

Brittany Harvey: And thank you to all of our listeners for tuning in to the ASCO Guidelines podcast. To read the full standards and practice recommendations, go to www.asco.org/standards. If you have enjoyed what you've heard today, please rate and review the podcast and be sure to subscribe so you never miss an episode. 

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