Author Archives: Real World Health Care Editorial Staff

Community Cancer Practices Tackle Behavioral Health Concerns

This week, Real World Health Care brings you an interview with Robert “Bo” Gamble, director of strategic practice initiatives, Community Oncology Alliance (COA). COA is the only organization dedicated solely to community oncology, where the majority of Americans with cancer are treated. We discussed the importance of allowing cancer patients to receive quality, affordable and accessible care in their own communities and how the COA is addressing the needs of community cancer care through Oncology Medical Homes and its Advanced Practice Provider Network.

Behavioral Health & the Oncology Care Model

Real World Health Care: What are some of the biggest challenges community oncology practices face in treating the behavioral health needs of their patients?

Robert Gamble, Director of Strategic Practice Initiatives, Community Oncology Alliance

Bo Gamble: For cancer patients, having care that’s close to home is especially important. One of the biggest challenges and a key focus of COA is to keep local cancer care teams in community practice settings and minimize their migration to larger academic and teaching hospitals. COA provides an important support structure for integrated community cancer care teams, including physicians, advanced practitioners, nurses, pharmacists, and practice managers. With the right support, community cancer practices have more time to focus on patients’ emotional and behavioral needs in addition to their medical needs.

From a patient-centered perspective, it’s about getting them the right care in the right place and at the right time. That extends to care for behavioral health, which is a component of the Oncology Care Model (OCM). Highly-coordinated care is a cornerstone of OCM, and we have a support network that helps community oncology practices succeed and thrive in implementing the OCM while managing increasingly complex services — including behavioral health services — and health care delivery pressures.

Oncology Medical Home

RWHC: What role can the Oncology Medical Home (OMH) play in helping cancer patients get the behavioral health screenings and treatment they need?

BG: COA has pioneered policy on OMH, which is a patient-centered system focused on promoting, delivering, ensuring and measuring quality and value in cancer care. One of the support arms in this effort is the OMH implementation committee that identifies, reviews and recommends tools, technologies and templates to assist cancer care centers.

Patient engagement is an important domain within the OMH. Community cancer care teams must listen to patients and respond to all their needs, including medical, behavioral, spiritual and financial needs. The OMH concept also extends to detailed survivorship care planning, which is now starting to be addressed more directly in community cancer practices and involves a range of specialty care practitioners, including behavioral health professionals. Patients need to stay involved and connected with that survivorship care team.

Advanced Practice Providers Crucial in Community Settings

RWHC: What role do advanced practice providers such as nurse practitioners and physician assistants play in helping cancer patients get the behavioral health screenings and treatment they need?

BG: Advanced practice providers (APPs) serve as clinical quarterbacks and often handle the bulk of patient communications and coordination, especially through survivorship care as I referenced just a moment ago. The COA has an Advanced Practice Provider Network that consists of a private, peer-to-peer information sharing website and listserv; monthly conference calls to review practice issues and discuss solutions; and opportunities for in-person meetings. The goal of the Network is to keep oncology APPs up to date on the latest news and developments including patient support strategies, health reform initiatives, the newest drugs and therapies, and APP leadership roles.

Increasingly, APPs are called on to manage everything from care team coordination to screening patients for distress issues that range from behavioral health problems, to clinical navigation and support, to local employers for the cancer care needs of their employees.

COA conducted a patient survey a few years back and, in virtually every category, APPs outscored physicians. That’s because they’re often more hands-on and tend to have an extra level of sensitivity and empathy so patients are more willing to open up to them.

Cancer’s Financial Toll

RWHC: How can community cancer practices help patients address the problem of financial distress?

BG: One of the first steps is to determine where the stress is coming from: Did that financial distress exist before the cancer diagnosis? The CMMI Oncology Care Model specifies that patients receive guidance on the expected total cost of care. It can be difficult for community cancer physicians to accurately estimate the total cost of a patient’s cancer care journey due to the many variables that may happen in the care process. But what should be communicated is the patient’s out-of-pocket costs — not just for treatments, but also costs related to managing side effects, dealing with unexpected costs like emergency room visits, and costs associated with end-of-life care.

The cancer care support team assists in identifying these needs, investigating and then utilizing these resources to aid the patient and family with this burden.

This assistance and support is also demonstrated by being available to the patient 24 hours per day 7 days a week.  This minimizes unnecessary emergency room visits and hospitalizations.  The benefit to the patient includes reducing financial burden but oftentimes more effective and efficient cancer care.

From screening for distress and navigating resources to creating detailed survivorship plans, the community cancer care team can form real and lasting bonds with patients. Those bonds are sacred and cherished and they should be encouraged to grow.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are pleased to announce the introduction of a new Cancer-Related Behavioral Health Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about this new Fund and how you can support it by visiting

Oncology Social Workers Play Important Role in Cancer Care

Real World Health Care is delighted to shine a spotlight on the Association of Oncology Social Workers (AOSW) and its Patient Centered Research Collaborative for Psychosocial Oncology (PCRC). We spoke with the PCRC’s Project Lead, Bradley Zebrack, PhD, MSW, MPH, FAPOS. Dr. Zebrack is Professor at the University of Michigan School of Social Work and also with a member of the Health Behaviors and Outcomes Research Program at University of Michigan Rogel Cancer Center.

Engaged Community

Real World Health Care: What are the goals of the PCRC?

Dr. Bradley Zebrack, University of Michigan School of Social Work

Bradley Zebrack: Our purpose is to establish an engaged community of oncology social workers, patient advocates, academic researchers and key stakeholders in research of relevance to patients and families. Our vision is to assure that cancer patients and their families access and receive care that is safe, efficient, effective, timely, patient-centered and equitable.

RWHC: How will PCRC achieve those goals?

BZ: Our intention is to create an innovative, productive and sustainable research network that fosters collaboration among experienced researchers, skilled psychosocial care providers, and informed patient advocates.

We’re working to enhance our ability to conduct research and use research findings to influence cancer care. One way we’re doing this is by conducting a series of face-to-face meetings and monthly teleconferences that engage and utilize our collective knowledge, talents and experiences.

Research Priorities

RWHC: What sort of research is PCRC focused on?

BZ: We spent much of our first year generating and prioritizing patient-centered research by identifying highly relevant topics and issues intended to ensure and enhance the quality of cancer care. A survey of our membership uncovered a number of priorities, including understanding the patient experience; palliative care, end-of-life care, and advanced care planning; distress screening; patient uptake of psychosocial support services; and mental health disorders and well-being.

Primary Providers of Psychosocial Care

RWHC: How are oncology social workers uniquely positioned to help address the psychosocial care of cancer patients and their families?

BZ: Social workers provide 60-70 percent of all mental health services in the United States, and oncology social workers are the primary providers of psychosocial care for cancer patients. Many are trained and well-positioned to influence cancer care delivery by participating in their institution’s cancer committee, where clinical care policies are deliberated, or by contributing to the generation, dissemination and implementation of evidence to inform patient-centered care.

RWHC: What challenges is the profession facing?

BZ: There are misconceptions about the role of social workers in health care settings. For example, some assume that social work is not an evidence-based practice. Another challenge is the lack of insurance reimbursement for social work services. There’s also a social stigma about using mental health services, despite evidence supporting its efficacy and benefit for patients and families.

Integrating Supportive Care Services

RWHC: How can patients and their families best make use of oncology social workers? What role should clinicians play in integrating the services social workers provide?

BZ: Cancer care systems need to do a better job integrating evidence-based supportive care services so they are available to patients. This is best done through collaborative care models in oncology, in which social workers are part of a multi-disciplinary team focused on identifying and responding to patients’ needs and supporting their adherence to standard protocols.

The positive effects of psychosocial care for cancer patients and their families are well documented in terms of enhanced patient outcomes, medical cost offsets, and even survival. Despite the evidence demonstrating the effectiveness of psychosocial interventions for cancer patients, shortcomings and disparities exist in the delivery, targeting and tailoring of psychosocial support services to those that need them.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are pleased to announce the introduction of a new Cancer-Related Behavioral Health Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about this new Fund and how you can support it by visiting


Psychosocial Care for Children with Cancer

This week, Real World Health Care brings you an interview with Lori Wiener, PhD, DCSW, LCSW-C, Co-Director, Behavioral Health Core and Director, Psychosocial Support and Research Program, Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute. We asked Dr. Wiener to talk about psychosocial problems facing children with cancer and their families and how the Center for Cancer Research is addressing their needs through studies and other resources.

Psychosocial Support and Research Program

Real World Health Care: Tell us about the mission and goals of the Psychosocial Support and Research Program at the Center for Cancer Research.

Dr. Lori Wiener, National Cancer Institute

Lori Wiener: The mission and goals of the pediatric psychosocial support and research program at the Center for Cancer Research are to: 1) conduct studies and develop new measures to identify the psychosocial effects of cancer and other chronic illnesses in patients participating in clinical trials and protocols; 2) provide and evaluate clinical interventions and educational services developed to help patients and their families prepare for and cope with the effects of cancer and other related medical conditions; and 3) to disseminate research findings beyond the NIH and demonstrate leadership in the field of psychosocial effects of chronic illness.

RWHC: How did you become interested in the field of psychosocial care for cancer patients?

LW: I began my training working with children and their family members in a community center in upstate New York and continued my training and work with children and families in outpatient mental health, residential treatment and private practice settings. I felt compelled to find more meaning in my work and accepted a position at Memorial Sloan Kettering Center (MSKCC). It was at MSKCC where I learned about the field of psycho-oncology – and at the National Cancer Institute about the many facets that comprise excellent psychosocial care for children and adolescents living with cancer and their family members.

I have witnessed, over and over again, the impact of serious disease on the child, adolescent, and young adult and concurrently, the impact of a serious childhood illness on the parents, siblings, grandparents, relatives, and the community of friends.  It is an honor to do this work and I have been permanently moved by the love, devotion, tenacity, courage, strength, and compassion of children and families under extraordinary stress.

The Impact of a Cancer Diagnosis

RWHC: What are some of the biggest psychosocial problems facing both children with cancer and the parents and families of those children?

LW: The diagnosis of cancer will have an immediate and potentially life-altering impact on the psychological, social, and emotional health of the entire family system. Following the immediate fear of questioning whether their child can survive the cancer diagnosis, families are tasked with learning complex medical terminology, exploring treatment options, rearranging work responsibilities, and re-prioritizing daily tasks. The child may experience painful or distressing treatments, procedures and side effects and adhering to therapy can be quite difficult.

Caring for a child with cancer often requires time spent in the hospital away from home and work. Families often experience cumulative financial hardship from travel expenses, temporary housing, medications, and treatment copays that can accumulate. Efforts must be made to help children to maintain their academic achievement during cancer therapy. Being separated from their peers and social support can be challenging, especially as children will also experience changes in their physical appearance.

Siblings of children undergoing cancer treatment are also exposed to significant stress as they are often separated from their family due to the geographic distance of the treatment center from home, resulting in decreased contact with family members and disruptions in their day-to-day routine while worrying about the health of their ill sibling. Grandparents also suffer. They observe the suffering of their grandchild, and also the suffering of the child’s parent having to go through such a challenging experience. If the sick child has a sibling, grandparents also worry about seeing their other grandchildren worry for their sibling and the consequences of the illness on their lives.

Children who complete treatment for cancer are at risk of both medical and psychosocial late effects in survivorship. Continued monitoring of their health is essential. As their personal outlook may have been altered by their cancer experience or limitations due to cancer therapy, there might be changes to their life plans and goals. If there is a relapse, more treatment is needed with increased uncertainty about the future.

If the child does not survive, families experience significant physical, emotional, social, and spiritual distress.

Helping families cope with impact on lifestyle, education, employment, siblings, and family relationships all fall within the scope of psychosocial care.

RWHC: How can all of those challenges be best addressed by both clinicians and the patients/families themselves?

LW: Comprehensive psychosocial care begins with early assessment of family strengths and vulnerabilities and incorporates a range of therapeutic interventions, utilizing interdisciplinary resources to meet the needs of all family members. Interventions and strategies must be aimed at identifying the continuum of coping responses, building on family strengths, assisting families with special needs, and enhancing adaptive coping skills. Each of these are essential to facilitating both family growth and survival through the crises generated by childhood cancer and should continue throughout and beyond the course of the disease into survivorship or bereavement. Family centered care, having the child and parents be included as members of the treatment team, is essential. This requires an ongoing multidisciplinary approach to the psychosocial care of children and adolescents and their families.

Voicing My CHOiCES™

RWHC: Tell us about the Voicing My CHOiCES™ study you’re conducting. What are its goals?

LW: Discussing end-of-life (EoL) care is very challenging for young adults (YA) living with a life-threatening disease. While many helpful documents exist to facilitate EoL conversations with adults, few resources exist to aid YA in understanding and accepting their changing physical, emotional and social needs when treatment is no longer effective.  Between 2007-2011, our team explored the helpfulness of Five Wishes with adolescents and young adults living with HIV or advanced cancer. This research led to the development of a new advance care planning (ACP) guide, Voicing My CHOiCES™ (VMC). However, Voicing My CHOiCES™ had not been empirically examined in its completed form. 

The objectives of the current study are to determine the perceived helpfulness of VMC and to determine whether engaging in advanced care planning using VMC is associated with reduced anxiety, improved social support, increased acceptance of illness, and/or improved communication about ACP with family, friends, and/or health care providers.

The study is open to participants ages 18 through 39 years living with cancer or another chronic illness. Each subject completes a baseline assessment of their anxiety pertaining to advance care planning, quality of social support, acceptance of illness, and quality of communication with family, friends and health care providers. Then they review Voicing My CHOiCES™, and comment on each section as to whether it can provide an opportunity to address ACP needs for themselves and for other YA their age living with a serious illness.

At 1-month, we re-assess the utility of the document, anxiety, quality of social support, acceptance of illness, communication about EoL planning, and whether the patient participant has shared any of the work completed in the document with a family member, friend, or health care provider. If the participant had shared preferences that were documented in Voicing My CHOiCES™ with a family member or friend, and had consented for us to contact that person, we complete a brief interview with the family member or friend to assess the helpfulness and limitations of Voicing My CHOiCES™ for ACP. If the participant shared the ACP preferences that were documented in Voicing My CHOiCES™ with their health care provider and had consented for us to talk with that health care provider, a brief interview is conducted with their health care provider to assess the helpfulness and limitations of Voicing My CHOiCES™ for end-of-life planning and whether any changes in the participants’ health care were made in response to Voicing My CHOiCES™.

Additional Resources

RWHC: Are there any National Cancer Institute resources you’d like to highlight for clinicians, patients, families or support communities who would like to know more about pediatric psycho-oncology?

LW: Standards for Psychosocial Care for Children with Cancer and Their Families details 15 evidence-based standards for pediatric psychosocial care. It was inspired and supported by the Mattie Miracle Cancer Foundation and was developed by pediatric oncology psychosocial professionals in collaboration with an interdisciplinary group of experts and stakeholders.

ShopTalk is a therapeutic game designed to help therapists communicate with pediatric patients (ages 7-16) about difficult emotional issues. ShopTalk has 3 versions: 1) pediatric patients, 2) siblings, and 3) children whose parents have cancer. The game has been distributed throughout the US and in 14 countries.

This is My World is a psychotherapeutic workbook for therapists working with children diagnosed with a chronic and a potentially life-threatening illness.

Katie Finds Her Courage tells the story of a child who learns about having NF1 and demonstrates the courage she finds to share her diagnosis with her classmates. An online version is being considered. 

I also recommend the following:

Abrams, A, Muriel, AC, Wiener, L. (Eds) Pediatric Psychosocial Oncology: Textbook for Multi-Disciplinary Care, Springer International Publishing Switzerland, 2016. 

Wiener, L, Pao, M, Kupst, MJ, Kazak, A, Patenaude, A, Arceci, R.  (Eds).) Quick Reference for Pediatric Oncology Clinicians: The Psychiatric and Psychological Dimensions of Cancer Symptom Management, 2nd Edition. Oxford University Press, 2015.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are pleased to announce the introduction of a new Cancer-Related Behavioral Health Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about this new Fund and how you can support it by visiting


Caregiver Conundrum: Supporting the Psychosocial Needs of the Cancer Support System

This week, Real World Health Care is delighted to highlight the American Psychosocial Oncology Society (APOS). We spoke with APOS President-Elect Vicki Kennedy, LCSW, executive director of Oncology Strategy & Patient Engagement at Cullari Communications Global. Ms. Kennedy shared insights on how APOS is addressing the psychosocial needs of cancer patients and caregivers alike.

Access to Quality Psychosocial Care

Real World Health Care: Tell us about the overall mission and goals of the American Psychosocial Oncology Society.

Vicki Kennedy, LCSW, President-Elect, APOS

Vicki Kennedy: The mission of APOS is simple– APOS aims to advance the science and practice of psychosocial oncology with the idea that we strive for a nation in which all people affected by cancer have access to quality psychological and social care to optimize their quality of life and health outcomes. We believe cancer and the ability to live well, no matter what the outcome of the illness, is much more than the biology of the disease. It is about the psychology and the social supports that impact the entire system around the individual with cancer. If we do not attend to the emotional, social and practical needs of patients with cancer and their families, we have not truly delivered the best cancer care.

Founded in 1986, APOS creates a multidisciplinary forum for the exchange of research and clinical practice expertise among many different types of psychosocial oncology professionals—psychology, social work, psychiatry, physicians, nursing, public health, etc. We focus on both the science and the art of helping people with the emotional side of healing and the integral role of psychosocial health and well-being in oncology treatment and survivorship.

We were saddened at the recent passing of the founder of APOS, Dr. Jimmie Holland, a renowned psychiatrist at Memorial Sloan-Kettering Cancer Center and the ‘grandmother’ of psychosocial oncology. Dr. Holland’s vision was that there would be a professional organization not only committed to bringing together all the disciplines that comprise the cancer care team, but also to advocate that caring for the whole person (and their family) makes a difference to their quality of life, health outcomes and ultimately the cost of health care.

Elevating the Profession and the Needs of Everyone Impacted by Cancer

RWHC: How does APOS address psychosocial care for caregivers of cancer patients?

VK: There are millions of family caregivers caring for someone with cancer today. Caregivers play an increasingly important role in helping their loved ones with the day-to-day demands of facing cancer including how to navigate today’s complex health care system. They provide physical care, emotional support and logistical management, which can place a huge burden on them. It’s important for both researchers and clinicians to work together with patients and their caregivers to gather evidence about these challenges and create solutions that address these pressures and demands.

APOS creates a place where researchers and clinicians come together to discuss and explore this intersection of research and practice. We want to be sure that the interventions and programs being offered in cancer centers, community organizations and private practices where we work are impactful and based on scientific evidence that it helps patients and caregivers to achieve optimal wellness even in the face of sometimes devastating illness. Our goal through education, training and creative partnerships is to ensure that people can find mental health and other support services across the country. This goal is not just because we feel this is the right thing to do; it is deeply rooted in scientific evidence that attending to the distress that patients and caregivers face related to emotional coping, personal relationships, practical and financial worries will lead to better health outcomes. And, if cure is no longer an option, ensuring that patients, caregivers and families receive state-of-the-art physical and emotional support along the journey.

At the APOS annual conference this year in Tucson, researchers and clinicians presented on a host of topics such as caregiver distress; survivorship; management of depression and other psychological trauma; health equity and the unmet needs of diverse populations;  etc.  We focused on cancer across the lifespan for both patients and caregivers. Throughout the year, we host educational webinars by some of the top experts in the field on a variety of topics as well as we recently launched a Psychosocial Oncology Institute that provides training in psycho-oncology for many disciplines. Finally, APOS  has a peer-reviewed, highly esteemed journal called the Journal of Psycho-Oncology where the latest science and information about evidence-based practice is published.

Caregiver Challenges

RWHC: What psychosocial challenges are common among caregivers of cancer patients? How can those challenges best be addressed?

VK: The hard part is that many caregivers don’t identify themselves by that term. They’re simply doing what they know to do and don’t imagine that it is a defined role. And yet they are challenged to balance the demands of caring for their loved one who is ill or recovering while caring for themselves, other family members and work or school responsibilities. Caregivers often experience personal distress as they worry about finances and just managing day-to-day life and often don’t pay enough attention to their own health and well-being. It’s common to feel overwhelmed in the role of caregiver and to need education and support to feel more confident and supported in the role, even in terms of logistics such as managing transportation to and from treatments and clinic appointments and making sure the patient takes their medications on time. It can be a heavy load and often caregivers are forgotten in the overall health care system.

These challenges can best be addressed by helping the caregiver know that, as clinicians, we care about their health and well-being in addition to that of the patient. Thanks to years of research and better understanding about the stress of caregiving, we are more attuned to caring for the person who is coming to appointments with patients — the person that patient identifies as the most important to them — and helping that caregiver access available resources to address their emotional and physical concerns. Those resources may come in the form of a social worker or support group, or in referral to a psychosocial specialist or community-based organization. No longer is the patient treated for cancer in a vacuum; we must address the network of people around the patient and especially the person who is assuming much of the responsibility for caring for the patient at home. This is challenging in a busy cancer clinic where the number of patients and caregivers is exponentially growing every day. At APOS, we are working across disciplines to create effective and efficient services and programs that help the system meet these needs, to ensure that cancer treatment continues on a timely, uninterrupted flow, and to help people help themselves throughout the journey.

Just as we now think of the “total patient” in terms of cancer care, we also need to think about the “total family.” Cancer is a family disease and requires commitment to making a difference. It is satisfying to see that the caregiver movement is continuing to grow. There are organizations such as the National Family Caregiving Association and others including APOS, that are standing up for the needs of cancer caregivers. An interesting, award-winning global campaign was recently launched called Embracing Carers that aims at elevating that we in health care as well as society must not ignore the pressures and concerns of millions of family caregivers across the globe.

Integrated Care

RWHC: How can the health care industry better integrate to address the special psychosocial needs of both patients and caregivers? What can psychosocial oncology professionals do to ensure that patients and caregivers get what they need?

VK: I believe there has never been a more crucial time in health care to elevate social, emotional, psychological and practical needs of cancer patients and their caregivers as well as the role of the psychosocial oncology professional. In over 35 years’ experience, I have worked from the bedside at a major cancer center, participated in psychosocial research and publications, led program development and clinical management for a global patient advocacy organization and facilitated several non-profit boards in strategic planning and business development. In my current role as a health care consultant, I am keenly aware of the rapidly changing environment in oncology and the pressure points it creates for our patients, our health systems and our very professional survival.

While we are seeing advances in cancer treatment at an unparalleled pace, we as psychosocial oncology professionals are challenged to demonstrate the value we bring not only in improving quality of life and enhancing health outcomes but importantly, in reducing the overall cost of care. Let’s face it—the challenges we are facing a nation in health care are many. Programs and services that do not address the ‘bottom line’ are often cut or seen as ‘nonessential’. We need the data and tools to make the case with our institutions and the health care system to why treating the whole patient (and family) is a quintessential part of value-based, personalized cancer care.

We must continue to elevate the voice of the patient AND caregiver to ensure that cancer care attends to the whole person especially in the vital conversations that are happening in health care right now. We can help patients and caregivers transform their cancer experience and survivorship and find optimal health and well-being no matter what the outcome of the disease. We can make it possible for patients to receive the optimal benefit from outstanding, albeit increasingly complex, cancer treatments. In the words of our founder, Dr. Jimmie Holland, it is caring for the ‘human side of cancer’ that defines the highest quality cancer care.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are pleased to announce the introduction of a new Cancer-Related Behavioral Health Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about this new Fund and how you can support it by visiting



Identification, Intervention and Integration: Why Earlier Is Better

This week, Real World Health Care brings you an interview with Paul Gionfriddo, president and CEO of Mental Health America (MHA), the nation’s oldest mental health advocacy organization. MHA promotes mental health as a critical part of overall wellness, including prevention services for all; early identification and intervention for those at risk; and integrated care, services and support for those who need it, with recovery as the goal.

Since 1949, MHA and its affiliates across the country have led the observance of May is Mental Health Month by reaching millions of people through the media, local events and screenings. This year’s theme is Whole Body Mental Health, focusing on increasing understanding of how the body’s various systems impact mental health based on recent research.

We spoke about MHA’s B4Stage4 philosophy, the importance of behavioral health screenings, and the challenges facing patients and providers who are coping with behavioral health problems associated with chronic illnesses.

Behavioral Health Screening

Real World Health Care: What is the significance of MHA’s B4Stage4 philosophy?

Paul Gionfriddo, president and CEO, Mental Health America

Paul Gionfriddo: Until recently, mental illnesses were the only chronic diseases for which society waited for a public safety problem to manifest itself before action was taken. It was only once a person posed a threat to himself or to others that intervention was initiated. And that intervention usually involved police, lawyers, judges, and often, incarceration. We would never consider waiting until other chronic diseases like cancer, heart disease or MS reached Stage 4 to intervene, but we did with mental health diseases.

Mental illnesses are not simply public safety issues. They are chronic health conditions and should be treated as such. B4Stage4 is a call for everyone in society to look at the early warning signs for mental health problems and to act earlier in making health care decisions that will best promote recovery.

RWHC: What role does mental health screening play in the B4Stage4 philosophy, and how is MHA working to encourage and facilitate such screenings?

PG: Screening is crucial for early identification and intervention. The U.S. Preventive Services Task Force recommends regular behavioral health screenings for everyone over the age of 11. Adults are accustomed to regular screenings for blood pressure and cholesterol, and children are commonly screened for vision and dental problems, but we don’t prioritize regular behavioral health screenings.

MHA offers a variety of online mental health screening tools (also available in Spanish) to help the general public, providers and caregivers open the doorway to recovery. These screening tools are the same ones physicians use, but they are self-administered, completely anonymous and provide customized recommendations on what to do next. Three thousand people take one of these screening tests every day, and to-date, more than three million people have been screened. The vast majority of those taking one of our online screening tests screen positive, even though they have not been diagnosed with a mental health condition previously.

Chronic Disease and Behavioral Health

RWHC: Are people with chronic illnesses like cancer or MS at particular risk for developing behavioral health problems?

PG: About 80 percent of the people with chronic illness who take one of our online screenings test positive for a behavioral health issue. A common misperception about those with a chronic illness is that anxiety or depression is a “natural” part of having a chronic medical condition, that it “makes sense” to feel down or low. All of the focus is placed on treating the medical health condition and not the behavioral health condition.

We see two distinct groups for which this attitude is a problem. First are those who have chronic health conditions and are at risk for developing behavioral health conditions. For example, people who have had heart bypass surgery are at risk for chemical imbalances that can lead to depression. Second are those whose behavioral health conditions can lead to medical conditions, for example a person with depression who develops diabetes due to lack of exercise and proper nutrition, or even treatment side effects.

So many disease management programs fail because they focus on only the medical condition or only the behavioral health condition. The health care industry needs to better integrate services to focus on treating the whole patient.

Integrated Behavioral Health Care

RWHC: What are some of the challenges facing health care providers treating those with chronic illnesses in terms of preventing or treating behavioral health problems that arise due to or after their illnesses?

PG: A key challenge is incomplete medical records. A primary doctor or medical specialist may not have visibility into the whole patient and may not have the time or training to efficiently incorporate behavioral health screening into their practice. They should know that screening doesn’t need to be a long, involved process. The tests are simple to use and easy to score. The PHQ9 test for depression, for example, contains just 10 multiple choice questions. The CAGE-AID test for alcohol or substance abuse contains only four multiple choice questions.

We also encourage patients to take our online screening tests before seeing their primary doctor or specialist and to bring their results to their appointment for discussion. They can even do it on their phone in the waiting room and bring it right into the exam room.

Another challenge is lack of awareness about referral sources among primary and specialty physicians. MHA is working to make sure that localities throughout the country have the programs and services needed, through support centers and peer drop-in centers. We have also launched a certified peer specialist program to help support and work alongside health care teams in clinical and social services settings. This program is helping to reduce recidivism and readmission rates and improve overall well-being among those with even serious mental illnesses.

We’re also working with patient advocacy organizations across a wide range of medical disease conditions to improve collaboration so that people are exposed to every available resource.

RWHC: Do you have any additional insight or advice to offer patients, providers or caregivers?

PG: The intersection of chronic medical illness and chronic behavioral illness is a significant one. My biggest piece of advice is: Don’t be afraid to ask. If you have a behavioral health problem and also are experiencing physical symptoms, talk to your behavioral health care provider about them. If you have a medical health condition and think you may be at risk for a behavioral health issue, talk to your doctor and search out resources that may be available through the patient advocacy organizations for your diagnosed medical condition. See what they have to offer in terms of behavioral health resources.

I encourage patients, providers and caregivers to visit our web site for more information on finding help as well.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are pleased to announce the introduction of a new Cancer-Related Behavioral Health Fund, specifically for treatment-related behavioral health issues in cancer. The Fund will provide financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about this new Fund and how you can support it by visiting

Can Psychosocial Care Increase the Value of Cancer Care?

This week, Real World Health Care interviews Suzanne M. Miller, PhD, Professor of Cancer Prevention and Control and Director of Patient Empowerment and Health Decision Making at Fox Chase Cancer Center (FCCC). Dr. Miller , is on the Board of Directors of the HealthWell Foundation and the Society of Behavioral Medicine (SBM), and serves as Chair of the Board of Directors of the New Jersey Health Care Quality Institute. She also serves as Editor-in-Chief for SBM’s flagship journal Translation Behavioral Medicine: Practice, Policy and Research.

At FCCC, Dr. Miller’s work focuses on developing, evaluating and implementing psychosocial interventions that can be readily integrated in ongoing cancer care to improve outcomes for patients and their families, especially those outcomes related to patient-centered experiences of their cancer diagnosis. FCCC’s goal is to integrate understanding of the psychological response and negative psychological consequences of a cancer diagnosis with a broader medical management of the patient, and thereby achieve optimal patient-reported outcomes.

We discussed the work of SBM and explored the link between cancer and behavioral health. We also talked about behavioral health screening and the importance of integrated care.

Advocating for Psychosocial Care 

Real World Health Care: How does the Society for Behavioral Medicine address the issue of psychosocial care for cancer patients?

Dr. Suzanne Miller, Fox Chase Cancer Center

Suzanne Miller: SBM advocates for NIH research funding so members and others working in cancer have the dollars they need to discover and scale new behavioral treatments and care approaches. SBM also shares the latest cancer care research with members through our journals and annual scientific conference. This gives them the best information for planning new studies and for helping patients in their clinics.

Our flagship journal, Translational Behavioral Medicine, publishes studies showing how successful behavioral treatments can move from the lab to the clinic where they can help real patients. The journal’s February 2018 issue highlights the use of genomic information in cancer care and in screening cancer patients’ family members.

Other papers published in 2017 feature best practices for encouraging more colon cancer screening and for helping breast cancer patients cope with diagnosis and survival. This recent research by Allicock, (2017) investigated the drivers of successful implementation of a peer-support program in rural cancer patient populations. It identified possible barriers to the effectiveness of similar community-engaged programs in improving survivorship outcomes.

Several SBM members are at the forefront of successfully training providers to deliver existing empirically supported interventions to patients as well as shifting interventions to user-driven, mobile-friendly, web-based platforms to widen reach in treating anxiety and depressive disorders in cancer patients.

Link Between Cancer and Behavioral Health

RWHC: What are some of the most common behavioral health problems associated with having cancer?

SM: A cancer diagnosis brings a wealth of psychological challenges. In fact, adults living with cancer have a six-time higher risk for psychological disability than those not living with cancer. Patients and families have to deal with not only the physical stress to their lives and potential livelihoods, but also with family dynamics and changes in their sense of self and future.

Cancer patients also must make numerous decisions while they are in an extremely emotional state. They must decide what treatments to pursue, both initially and over the long term, how to cope with treatment side effects, how to deal with disability and maintain an independent identity, and how to maintain quality of life.

Depression and anxiety are common diagnoses associated with these challenges, yet, despite all of this, social or emotional support is offered in less than half of cancer patients’ care. If cancer patients have certain behavioral health conditions and they are not treated for them, it can negatively impact health outcomes by affecting their ability to make sound medical decisions, by decreasing the chances of them seeking and adhering to treatment, and by affecting their immune systems and ability to fight off cancer. Behavioral health issues can also contribute to harmful health behaviors such as smoking. Adults with depression are more likely to smoke heavily and less likely to quit smoking. Smoking is not only linked to cancer incidence but is also associated with a higher burden of side effects reported by cancer patients during treatment and in survivorship.

RWHC: Can behavioral health problems exacerbate physical or biological problems in cancer patients?

SM: Yes, in a number of ways. They interfere with rational decision-making about one’s treatment and one’s life choices. They also undermine adherence to needed regimes, especially over time. For example, after a breast cancer diagnosis, most patients undergo recommended surgery. However, following surgery, many patients are advised to go on hormonal regimes that can be toxic and difficult to endure. Depression and anxiety can undermine adherence to those regimens.

At a physiological level, healing can be delayed or impaired, making patients less likely to reenter society and more likely to experience relapse and recurrences. For example, cellular and molecular processes can be negatively influenced by untreated behavioral disorders in cancer patients, which can lead to the cancer’s progression. Importantly, this connection can also work conversely, meaning psychological treatment has been found to improve underlying biological status. A compelling example of this was shown by Thornton,, (2009) who used a psychological intervention to alleviate symptoms of depression among cancer patients and reduce the presence of inflammatory markers found in the body. This is important because inflammatory markers are an indicator of the stress that is being placed on a person’s immune system. Since mental health issues are also associated with smoking and other unhealthy behaviors, behavioral health problems appear to contribute to worse health outcomes for cancer patients and survivors.

Attention and Support

RWHC: Do you think behavioral health impacts of having cancer get enough attention from the provider community?

SM: The provider community is well aware of and sympathetic to the kinds of challenges patients face. However, they often lack the time and expertise needed to sufficiently screen for depression and anxiety and related psychological issues. This serves as a barrier for provider compliance with recommendations that patients with behavioral health problems receive evidence-based psychological treatment. Further, there is a lack of available costs and infrastructure to pay for appropriate psychosocial interventions. All of this amounts to only 14% of cancer patients receiving behavioral health counseling. Therefore, we are faced with behavioral health issues like depression, which is common in cancer patients and is known to negatively influence cancer outcomes, which are not being addressed sufficiently in the current standard of care.

RWHC: Are there any stigmas attached to this from the patient’s perspective?

SM: Cancer has been the big “C” from the time people became aware of it. More than any other disease, patients fear it and suffer tremendous concerns about the social impact for them and their families when people learn that they have a cancer diagnosis. Further, cancer doesn’t go away. Survivorship and late effects last well after the initial diagnosis, even for early stage cancers. In fact, for a third of cancer patients, distress persists more than a year after their cancer diagnosis and comes in the forms of worrying about the future, feeling lonely or isolated, and financial concerns—to name a few. In addition, there is a very real insurance threat to the individual from having a so-called “pre-existing” condition such as cancer.

RWHC: Who are the best people to advocate for a cancer patient’s behavioral health? What happens when a patient doesn’t have a strong support network?

SM: I believe a well-coordinated health care team, combined with patient and community resources, is the best way to advocate for behavioral health. Each one brings a particular expertise that can speak not only to the public, but also to policy makers. At the patient level, patients need strong support from their families, peers, work, and their health care providers. Among the health care team, mental health providers are especially well-equipped to advocate for patients’ behavioral health needs. At the broader level, the system must consider psychosocial intervention as integral to patient care as a medical intervention. In fact, the two are synergistic, and we must be bold in the serving of the relevance of behavioral health in the overall health of patients diagnosed with cancer.

Behavioral Health Screening

RWHC: What sort of challenges need to be overcome to make a case for the value of psychosocial care for cancer patients?

SM: It is extremely important to show the viability of screening for cancer distress in a cost-effective manner, especially when using information technology (IT) that can help relieve the burden on the health care system. That is exactly why the National Cancer Institute is looking to fund projects that use IT to support the systematic screening and treatment of depression in cancer patients. In addition, it’s very important to show the value of psychosocial care in terms of its impact not only on psychosocial outcomes like depression and anxiety, but also on improving adherence, reducing readmission rates, improving survival rates, and reducing recurrence rates.

Value is defined as health outcomes achieved per dollar spent, so if psychosocial care can improve adherence and survival rates while also decreasing readmission and recurrence, then it can certainly be argued that psychosocial care will increase the value of health care provided.

The Whole Patient

RWHC: How can improving the integration of care and caring for the “whole patient” help to improve behavioral health among cancer patients?

SM: Cancer patients face reality-based anxiety and depression, stigma, changes in self and family identity, and a more frightening and uncertain world. When the health care system limits care to medical interventions, it not only makes the impact of those interventions less effective, but it also fails to recognize the impact of psychosocial influences on cancer prognosis and survivorship.

While some patients may find their way in psychological or social support interventions, if these interventions are not well-integrated within the context of the medical care model, they limit their impact and their validation. This means that patients will be much less likely to have access to, and to uptake, critical psychological resources that can not only improve quality of life, but the quantity of life as well. An integration of care ensures that patients get access to these resources and that no patients are lost to follow-up when it comes to behavioral health care. It provides the patient with a team of support that tackles the physical, social, and emotional challenges that come with a cancer diagnosis.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are pleased to announce the introduction of a new Cancer-Related Behavioral Health Fund, specifically for treatment-related behavioral health issues in cancer. The Fund will provide financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about this new Fund and how you can support it by visiting



Multiple Sclerosis: Overcoming Pain

In March, Real World Health Care will launch a new series focusing on the behavioral health impacts of chronic illnesses. Until then, we will revisit a few of our recent blog posts that touch briefly on related behavioral health issues. This week, we revisit our interview with Dawn Ehde, PhD, Department of Rehabilitation Medicine, University of Washington School of Medicine. Dr. Ehde serves as a clinical psychologist and professor at UW. She conducts research evaluating the efficacy of various behavioral, exercise, and pharmacological interventions for chronic pain, depression, and/or fatigue in adults with multiple sclerosis (MS) and other acquired neurological conditions.

Dr. Ehde discusses some of her recent clinical and research work on cognitive-behavioral interventions for MS-related pain.

Living with MS and Pain

Real World Health Care: In 2015, you published an article: Utilization and Patients’ Perceptions of the Effectiveness of Pain Treatments in Multiple Sclerosis. Can you summarize the key results of your study and the implications for patients with MS?

Dawn Ehde, PhD, University of Washington School of Medicine

Dawn Ehde: We conducted this survey to learn more about pain management from the perspective of people living with MS and pain. We found that people with MS and pain try a lot of different treatments to manage pain, but few treatments provide adequate pain relief.

Nonprescription medications such as nonsteroidal anti-inflammatories and physical modalities such as massage were some of the most common methods used. Many use more than one treatment to manage pain. Some of the treatments that individuals rated as most helpful, such as hypnosis, were infrequently used. In fact, we found that very few people surveyed had tried or accessed behavioral pain treatments such as training in mindfulness meditation, cognitive behavioral self-management, or self-hypnosis. This was the case even though there is good evidence that these types of treatments are beneficial to many people with chronic pain, including MS, and have few or no negative side effects. This study highlighted for me the need to improve access to these types of non-pharmacological pain management.

Integrated Care Approach

RWHC: Are you currently involved in any other research relating to pain management in MS patients?

DE: We have several studies in various stages that address pain management in MS. We recently published a study that found that an eight-session telephone-delivered self-management intervention was effective in reducing pain (both its severity and its interference with activities) and fatigue. It also was effective in improving mood, quality of life, and resilience. The benefits were maintained at 6- and 12-month follow ups. Patient satisfaction with the treatment was high as well.

The study I am most excited about is the MS Care study, which is a comparative effectiveness trial that evaluated the benefits of an integrated care approach to pain and depression management in the clinic called “collaborative care.” The MS version, called “MS Care,” aims to improve the quality of pain care in the clinic by adding an MS Care manager to coordinate care, deliver brief behavioral treatments, initiate or adjust other medical treatments, and ensure patients do not slip through the cracks. We also offer patients the choice of getting their care management by phone or in person. Seventy-five percent chose the phone. We found that patients with chronic pain and/or depression randomly assigned to MS Care had significantly improved pain and depression symptoms, including less severe pain, less interference, less disability, and less fatigue. Additional details on the results are available at

Opportunities in MS Pain Research

RWHC: What are some of the biggest challenges facing researchers who are studying pain management in MS patients? How can those challenges be overcome?

DE: I actually see a lot of opportunities as an MS pain researcher. The MS community is interested in improving pain management and supporting research in this area. For example, the National MS Society has named pain as one of its research priorities. We also often find people with MS are willing participants in our research, both as participants as well as stakeholders who guide us in our research. For example, we used stakeholders to guide our MS Care study. At times, we have had to work hard to convince potential funders that pain is an issue that warrants funding and study, but that has improved in the time that I’ve been doing research. We have come a long way since I first started in this area, when pain was not always recognized as an important problem deserving attention in MS.

Challenges for MS Clinicians

RWHC: What are some of the biggest challenges facing clinicians who are treating MS patients with pain management problems?

DE: MS presents many different symptoms to manage, and thus both patients and clinicians have a lot to discuss and manage in the typical clinic appointment. One challenge is that pain management is often only one of several issues being addressed. As such, it may be difficult to fully manage a complex issue like chronic pain. I think these challenges may be overcome by rethinking how we approach and deliver pain care. We need to look at harnessing technology — including telehealth technologies — to improve care. We also need to empower patients and the MS community to recognize that pain management is something that requires active self-management and multimodal strategies.

Pain Management Therapies

RWHC: What do you see as the most promising pharmaceutical therapies for treating pain in MS patients? What are the caveats that must be understood by clinicians when prescribing such therapies?

DE: As a psychologist, I’m less able to speak to promising pharmaceutical therapies on the horizon. However, I think there are promising practices for how we deliver pain care, including medications and other rehabilitation interventions. We did manage medications in our MS Care study, and our goal within that was to promote the appropriate and effective use of pain medications and other medications that can benefit pain management, such as some of the antidepressants which have analgesic benefits. We know from our research that too often, patients get started on a treatment, perhaps at a “low dose,” and for whatever reason, they don’t have adequate follow up to adjust, intensify, or change treatment plan. In the MS Care study, we closely and quickly followed patients’ pain and adjusted treatments to optimize their benefits or switched treatments if needed. We also know that physical activity — whether it is physical therapy or encouraging physical activity — benefits people with MS and likely helps with pain management.

RWHC: Do you see a role for non-pharmaceutical pain management therapies in treating pain in patients with MS?

DE: Certainly. This is where I’ve spent most of my energy, not only because I am a psychologist, but also because many people with MS want to use non-pharmacological therapies and strategies. The people with MS I know and our stakeholders are eager to advance our understanding and use of non-pharmacological treatments such as mindfulness meditation, relaxation, and cognitive behavioral coping skills.

Partnering with Patients

RWHC: What initially got you interested in this field? What continues to inspire you?

DE: I have had family and friends with MS, and thus was drawn to learning more about MS. I started out conducting chronic pain research in people where chronic pain such as headaches was the primary problem. When I started working with patients with MS clinically, I was struck by how little we knew about MS pain management and how people with MS pain were not accessing care we knew was helpful in other pain populations.

I’ve been inspired and continue to be inspired by the people with MS whom we’ve partnered with to conduct our research. Our best research has resulted from partnering with people living with MS. They’ve also taught me a lot about resiliency. Although MS can present many challenges like pain, many people with MS and pain live full, meaningful and happy lives.

I also have been fortunate to have training grants from the National MS Society, which have allowed me to train postdoctoral fellows in MS and rehabilitation research. They represent the next generation of clinical researchers in pain and symptom management in MS.

Pain Management for Cancer Survivors

In March, Real World Health Care will launch a new series focusing on the behavioral health impacts of chronic illnesses. Until then, we will revisit a few of our recent blog posts that touch briefly on related behavioral health issues. This week, we revisit our interview with Judith A. Paice, PhD, RN, who is the lead author for the American Society of Clinical Oncology’s guideline, Management of Chronic Pain in Survivors of Adult Cancer. Dr. Paice is Research Professor of Medicine, Hematology/Oncology, at Northwestern University’s Feinberg School of Medicine and a full member of the Robert H. Lurie Comprehensive Cancer Center. Dr. Paice’s clinical work focuses on the management of cancer-related pain, and her research focuses on the study of chemotherapy-induced peripheral neuropathy. We spoke about the ASCO guideline and the need for clinicians to balance pharmaceutical and non-pharmaceutical approaches to pain management.

Real World Health Care: Why did ASCO issue a guideline for the management of pain in survivors of adult cancer?

Judith A. Paice, Feinberg School of Medicine, Northwestern University

Judith Paice: The oncology field has evolved tremendously in recent years. Not only are people living longer with cancer, but they’re being cured of their disease thanks to some fantastic treatments. These treatments provide good clinical responses, but they can also cause significant toxicity, some of which may lead to chronic pain syndromes. The goal of the guideline was to alert oncologists to the presence of these long-term, persistent pain syndromes. A secondary goal was to provide support for chronic pain syndrome treatment.

Clinician Guidance

RWHC: What are the most important take-aways for clinicians?

JP: First are ASCO’s recommendations for screening and assessment. Second are recommended treatment options, both pharmacological and, equally important, non-pharmacological treatments. The guideline also provides insights and risk mitigation strategies for clinicians around the long-term use of opioids.

Today’s oncologists are faced with a very different pain management phenomenon than they were 20 years ago, when opioids were primarily used at end of life. Opioids are now being used for patients with a much longer survival trajectory — 20 to 30 years or more. As clinicians, we need to ask if such long-term use of opioids is appropriate and safe. How do we go about determining that? The guideline helps oncologists with those types of assessments and decision making.

RWHC: What do you feel are the biggest challenges facing oncologists in managing chronic pain in cancer patients, and how is ASCO helping clinicians manage those challenges?

JP: Our society is facing a serious public health problem in the opioid abuse and misuse epidemic. As a result of this problem, we’ve seen regulations at both the state and federal level that are having a chilling effect on the availability of opioids, even for those in desperate need of these medications. ASCO has a position paper on protecting access to treatment for cancer-related pain that I encourage all clinicians to read. ASCO also advocates for better third-party reimbursement for physical therapy, occupational therapy, cognitive behavioral therapy and mental health counseling. These are crucial therapies for patients facing the “new normal” of cancer survivorship, yet most third party payers provide little or no support for these treatments. As clinicians, we need to help our patients maintain function and cope with the fact that their lives are going to be very different. For patients, it’s more than surviving cancer. It’s about finding their own inner strength in survivorship.

New Pain Management Treatments

RWHC: Where do the biggest opportunities lie for new pharmaceutical pain management treatments?

JP: Several new findings in the laboratory may lead to novel agents that do not produce opioid related adverse effects. This is promising, assuming the findings can be translated into a clinical setting. There have also been numerous compounds that proved effective in animal models of pain, but when moved into the clinical setting, they either had adverse effects that weren’t seen in animals, or they didn’t have the efficacy they presented in the lab. It is very difficult to develop a model of cancer pain in animals.

Unfortunately, there haven’t been many completely new drugs. Most of the agents approved recently are slight variations of existing compounds or an update in the delivery method: a spray instead of a tablet, for example. The industry has been more focused recently on abuse-deterrent compounds. This is a somewhat controversial area because while such formulations prevent people from crushing, snorting or injecting the drugs, they don’t keep people from taking more than what is prescribed.

Non-Pharmacologic Therapies

RWHC: What should the role be for non-pharmaceutical pain management therapies in treating cancer patients?

JP: For quite a long time, there was a tendency in medicine to rely only on pharmaceutical therapies. This made sense when patients did not have long-term survival prospects and when managing pain meant helping the patient get from their bed to a chair. Today, cancer patients are living longer. They want to get back to work and function safely without the risk of falls and other complications.

We’ve seen good data around the usefulness of physical therapy, occupational therapy and cognitive behavioral therapy for many chronic pain situations, including cancer-related pain. These non-pharmacologic therapies must go hand-in-hand with pharmaceutical therapies.

Part of the challenge with non-pharmacologic therapies is limited reimbursement. The other big challenge is getting buy-in from patients. Most of us want a quick fix. Redefining expectations can be difficult. Physical and occupational therapy can be demanding, and access to specialists who understand the special needs of those surviving cancer are in short supply. Also, there remains a stigma attached to seeing a mental health counselor. It’s important for cancer patients to know that they aren’t “weak” if they need support to help them cope with the physical and emotional challenges of being a cancer survivor. Our field needs to do a better job educating our patients about the importance of including non-pharmacologic therapies as part of our pain management repertoire.



Patient Agitation in Alzheimer’s Disease: Implications for Patients and Caregivers

In March, Real World Health Care will launch a new series focusing on the behavioral health impacts of chronic illnesses. Until then, we will revisit a few of our recent blog posts that touch briefly on related behavioral health issues. This week, we feature our interview with Anton Porsteinsson, MD, Department of Psychiatry, University of Rochester School of Medicine. Dr. Porsteinsson is the Director of the University of Rochester Alzheimer’s Disease Care, Research and Education Program and has devoted his career to the care and study of individuals with memory disorders. Following up on his recent randomized clinical trial of citalopram, we discussed why it’s important to focus on treatments for AD-related agitation — both for AD patients and their caregivers.

Real World Health Care: Why is it important to study agitation in patients with Alzheimer’s disease?

Anton Porsteinsson, MD, University of Rochester School of Medicine

Anton Porsteinsson: Agitation is quite common in people with AD. It has a huge impact on their quality of life, as well as their family members’ and caregivers’ quality of life.

RWHC: Prior to your CitAD Randomized Clinical Trial, why had previous pharmacological treatment options been deemed unsatisfactory?

AP: A number of medications have been studied over time for this condition, including atypical and conventional anti-psychotics and mood stabilizers. But the efficacy they showed, if any, was modest at best. At the same time, these medications have serious potential complications such as increases in cerebrovascular events, sedation, falls, Parkinsonism and even increased mortality.

RWHC: Your trial focused on patients receiving psychosocial intervention. Why is psychosocial intervention important for AD patients?

AP: Medications should rarely be the first line of treatment for AD patients. Not everyone needs to be treated with medications. That’s why it’s important to evaluate the root cause of the agitation problem. Is the patient agitated because of something going on in his or her environment? I remember a situation from a few years ago when I was seeing a summertime spike in agitation-related consultations from patients in a particular nursing home. It turns out the nursing home didn’t have air conditioning. So it’s not surprising patients were bothered and agitated. In AD cases, agitation may have as much to do with your roommate as your receptors.

Psychosocial intervention helps to channel nervous energy and restlessness by involving patients in something purposeful, or even giving them some sort of outlet, like an area to pace around where they are safe and not in anyone’s way.

RWHC: The trial also focused on the effects of citalopram on caregiver distress. Why is this an important area of study?

AP: Caregivers, who are often family members with little or no medical training, may not understand what is going on with their loved one. They may take the patient’s behavior personally, which can cause a great deal of stress. Even if you’re a saint, it can build up and take a lot out of you.

Providing care for someone with AD is very hard under the best of circumstances. It’s even more difficult when the patient is verbally or physically aggressive, uncooperative, or agitated. Caregivers need advice, support and tools to help them handle the situation. They need to learn to give themselves breaks, that it’s OK not to be perfect, and that help is available for them. I find that a lot of caregiver stress is alleviated when, as health care providers, we listen to them and take their concerns seriously.

Caregivers need to know that agitation in AD patients is common and that there are ways to deal with it. Providers must connect them with resources like the Alzheimer’s Association and community agencies. We need to help alleviate their concerns about finances. And we need to help them set up a working plan on how to deal with their situation — to bring order to the chaos.

RWHC: How will the results of the CitAD Randomized Clinical Trial inform your future AD research?

AP: This trial was extremely educational for the research community. It was one of the first studies to show that a medication was effective in multiple ways — both on a clinical scale in reducing agitation among patients and in reducing caregiver distress. We also found efficacy for other AD patient behaviors like anxiety, irritability and delusions or hallucinations.

On the flip side, we discovered some complications. Citalopram has been used widely for decades with vulnerable populations. But in the last five or six years, it’s been found to not be as safe as once thought. It has the traditional SSRI side-effects of mild gastrointestinal distress and mild sleep pattern disturbances. But it also has been found to have an impact on cardiac conduction, especially in higher doses. In fact, when we were about three-quarters of the way through the study, the FDA suggested that, for people older than 60, there should be a dose limit of 20mg per day.

We confirmed this finding in our study. We also saw a drug placebo difference on a cognitive measure, the MMSE (Mini Mental State Examination). It isn’t clear if this was due to baseline differences between the two groups and drift toward the mean, as the placebo group improved on the MMSE and the drug group saw a modest decline, or if it was a true modest cognitive toxicity. Until proven otherwise, we have opted to assume this is a potential side effect and we warn against it.

For our next study, we considered testing a lower dose of citalopram (20mg daily), but then we found that the active isomer of citalopram (S-citalopram) seemed to be better correlated to benefits seen in the study, while the inactive isomer (R-citalopram) more correlated with the adverse effects. S-citalopram is available as a generic drug, approved for depression and anxiety. We intend to study that drug further.

RWHC: What are some other areas of AD research you’re currently involved in within the URMC Memory Care Program? What do you see as your most promising area of research?

AP: We have a broad portfolio of research programs at URMC. We’re one of the more active academic-based clinical research programs in the country. Currently, we’re conducting two behavior-focused studies. One is ongoing and is based on positive findings on dextromethorphan hydrobromide and quinidine sulfate, with a new formulation that uses less quinidine. We’re also looking at methylphenidate for treatment of apathy in patients with AD.

We’re also investigating new imaging techniques and various biomarkers to improve our ability to identify those at risk. And, we’re working to find better ways of monitoring the progression of the disease and response to treatment through the ADNI study, which just received a fourth wave of funding.

Other areas we’re investigating include prevention studies with people who are cognitively normal, but who have elevated beta-amyloid or genetic biosignatures that indicate future pre-disposition. We’re looking at a passive and active vaccine against amyloid production. And we have a number of different studies on the prodromal stage of AD, working with beta secretase inhibitors that block the production of beta-amyloid.

It’s actually a very exciting time in Alzheimer’s disease research. We’re seeing improved funding from federal sources and a rejuvenation of interest from the pharmaceutical industry. I’m quite optimistic that in the next five to ten years, we will make substantive progress in terms of our ability to limit AD. I think it’s overly optimistic to expect a cure in that timeframe, but we can certainly make a dent, particularly from an early intervention standpoint. Treating this disease early is the critical factor.


Skin Cancer Awareness and Prevention Efforts in Focus at American Academy of Dermatology

In March, Real World Health Care will launch a new series focusing on the behavioral health impacts of chronic illnesses. Until then, we will revisit a few of our recent blog posts that touch briefly on related behavioral health issues. This week, we revisit our profile of the American Academy of Dermatology. We spoke with the AAD’s new President, Henry W. Lim, MD, about the organization’s mission and some of the challenges and opportunities associated with preventing and treating melanoma and other skin diseases.

Real World Health Care: Please tell our readers about the overall mission of the American Academy of Dermatology.

Henry W. Lim, MD, American Academy of Dermatology

Henry Lim: The American Academy of Dermatology promotes leadership in dermatology and excellence in patient care through education, research and advocacy.

As the largest, most influential and representative dermatology group in the United States, and the largest such organization in the world, the AAD works to make sure its values reflect this mission. The AAD’s values include putting patients first, encouraging its members to adhere to an uncompromising code of clinical and ethical standards, fostering an interest in our members to pursue lifelong learning, encouraging collaboration and working within our communities and embracing diversity.

Public Education: Sun Safety

RWHC: How does the AAD’s mission address melanoma?

HL: It is estimated that 161,790 new cases of melanoma will be diagnosed in the U.S. in 2017.  That is a staggering number that could be reduced if people incorporated skin cancer detection and prevention behaviors into their lives.

The AAD works to increase public awareness of skin cancer and its risks through its SPOT Skin Cancer campaign, which is designed to create a world without skin cancer through public awareness, community outreach programs and services, and advocacy that promote the prevention, detection and care of skin cancer.

The first step toward a world without skin cancer is educating the public about prevention. The Academy has long communicated sun-safety messages to the public about the importance of skin cancer prevention and detection.

In addition, dermatologists have led the medical community in finding and treating skin cancer. For more than 30 years, dermatologists across the country have hosted 2.5 million free SPOTme® skin cancer screenings that have detected 28,822 suspected melanomas and 256,329 suspected skin cancer lesions.

To assist the public with learning more about skin cancer prevention and detection, the AAD offers a variety of free, online videos, downloadable handouts and skin self-exam resources, including a body mole map, as well directories to find a dermatologist and skin cancer screenings.

Melanoma & Skin Cancer Awareness

RWHC: What is the AAD doing in 2017 to recognize Skin Cancer Awareness Month?

HL: The AAD’s 2017 SPOT Skin Cancer campaign, Check Your Partner. Check Yourself, encourages the public to be aware of changes on their skin that could be signs of skin cancer. Research has shown that women are more likely to detect suspicious spots on others.  Men over the age of 50 have a higher risk of developing melanoma, than the general population, so the campaign encourages women – often the health care decision makers of a household – to check their partner’s skin regularly, check their own skin, and to visit the AAD’s SpotSkinCancer website to find a free SPOTme® screening in their area.

RWHC: Do you have additional initiatives you’d like to highlight?

HL: In addition to the activities for Skin Cancer Awareness Month in May and the SpotSkinCancer™ website, the AAD works with state dermatology societies and state legislatures to introduce and support laws and regulations that protect consumers and promote awareness about skin cancer prevention and the dangers of indoor tanning. As a result, 42 states have enacted tanning bed restrictions to potentially reduce the risk of melanoma and other forms of skin cancer.

The AAD’s Shade Structure Program awards shade structure grants to schools and non-profit organizations across the country in order to protect children and adolescents from the sun’s harmful rays.  Since its launch in 2000, the AAD’s Shade Structure Program has awarded 350 shade structure grants, which provide shade for more than 600,000 individuals each day.

The AAD also has a strategic social media presence on Facebook, Twitter, YouTube and Pinterest, designed to raise awareness about skin cancer detection and prevention.  Social media, including paid, promoted posts, reach our targeted audiences – the public, our members and the media – with links to AAD resources.  We encourage our followers to like, share and re-tweet our skin cancer awareness videos and tips.

Melanoma Research

RWHC: Does the AAD underwrite or otherwise support research into melanoma detection and/or treatment?

HL: While AAD is not a research funding organization, the AAD does provide annual awards for Young Investigators in Dermatology.  These awards recognize outstanding basic and clinical/translational research by young dermatology investigators and some of the projects are related to melanoma.

The purpose of the award is to acknowledge research contributions by individuals at the start of promising research careers that further the improvement of diagnosis and therapeutics in the practice and science of dermatology.

RWHC: What do you see as the biggest challenges facing researchers studying melanoma treatments and clinicians treating melanoma?

HL: The rapidly changing health care environment presents major challenges to researchers and clinicians in all aspects of dermatologic care, not just those studying and treating melanoma. 

A significant challenge is the inadequate funding for research, together with the pressure to increase clinical revenue generated by clinician researchers.  For many years, the American Academy of Dermatology Association (AADA) has been active in advocating increased research funding by NIH to dermatology research, including through our support of the 21st Century Cures Act.

The current health care system also presents barriers that impede patient access to the best possible care from a qualified physician.  To combat this, the AADA is working with all dermatology care providers and other physicians to confront these challenges.

In particular, the AAD recently launched a new specialty positioning campaign, SkinSerious, to raise awareness of the serious impact of skin disease. Our goal is also to improve access to dermatologists’ expertise and increase collaboration with our physician peers to ensure high-quality patient care. We know that when dermatologists work with other physicians as part of the health care team, everyone can benefit from improved patient outcomes and lowered health care costs.

Other concerns within the health care environment that the AADA is closely monitoring include the rise of big data and the growth of teledermatology.  We closely follow developments at the federal and state levels and, when appropriate, the AADA will take action on issues that can be influenced positively for dermatology and pursue opportunities to impact health care policy. 

Promising Melanoma Treatments

RWHC: What do you see as the most promising or breakthrough melanoma treatments on the horizon?

HL: This is an exciting era in melanoma research.  In-depth understanding of the molecular pathways of melanoma development has led to the availability of immune checkpoint inhibitors; combinations of these medications are being looked at in clinical trials.  Metabolic manipulation of the peri-tumoral environment to inhibit the growth of melanoma is being actively investigated.  Understanding of the genes responsible for melanoma resulted in the availability of gene expression profile (GEP) test that can be used to determine biologic behavior of melanoma.

Melanoma Prevention

RWHC: What are the biggest challenges facing the medical community in terms of increasing awareness of and adherence to melanoma prevention efforts among the general public?

HL: The challenges facing the medical community around melanoma prevention are two-fold.

One is the misconception that a tan is a sign of health.  Tanning is a protective physiologic response of our skin to damage caused by ultraviolet radiation.  There is no such thing as a healthy tan, yet people continue to seek the sun or use indoor tanning, thereby increasing their risk of skin cancer.  This is a particularly challenging message to get across to young women and men, who feel peer and societal pressure to be tan.

The AADA was instrumental, along with several other organizations, in having the FDA re-classify tanning lamps from the Class I to Class II medical device category, which requires more supervision and restriction in their purchase and use.  For the past several years, the AAD has released a new public service advertisement that focuses on the dangers of tanning, particularly targeting young women.  We know that melanoma is the second most common cancer in young women, and this may be due in part to their tanning habits.

The 2016/2017 public service advertisement is called “Arms,” and features two young women comparing their tans at various stages in their lives. The emotional ad concludes with the two friends clasping hands in the hospital as one of them reveals she has advanced stage melanoma.  This PSA, and our previous ones, have resonated strongly with young women, especially on social media, where they have liked and shared the video with their friends.

The second challenging misconception is that many people believe that sun exposure is the best source of vitamin D.

While our bodies need vitamin D to build and maintain strong, healthy bodies, the AAD does not recommend getting vitamin D from sun exposure or indoor tanning because of the increased risk of skin cancer.  In fact, it has been demonstrated that sun exposure that results in increased vitamin D levels is directly correlated with DNA damage.

Vitamin D from food and dietary supplements offers the same benefits — without the danger of skin cancer — as vitamin D obtained from UV light.  Vitamin D cannot be used by the body until it is processed by the liver and the kidneys. The usable form of vitamin D created by this process is the same, regardless of how it enters the body.

The AAD recommends dietary sources (foods naturally rich in vitamin D, fortified foods and beverages) and vitamin supplements as sources of vitamin D that are available year-round and can easily be incorporated into a healthy lifestyle. Good sources include fortified milk, cheeses and yogurt, fortified cereal, and oily fish like salmon and tuna. Research shows that vitamin D supplements are well tolerated, safe, and effective when taken as directed by a physician.

The fact is these myths are harmful because the consequences of this misinformation could be potentially fatal.

RWHC: What personally inspires you to build awareness of the importance of preventing melanoma?

HL: Having been in dermatology practice for 40 years, I see on a regular basis the devastating effects that melanoma has on patients and their family.  The risk of developing melanoma can be significantly decreased by sensible photoprotection, and avoidance of tanning beds.  The exciting new developments in the treatment and genetic profiling of melanoma reflect the value of investment in scientists and research projects, and I look forward to additional treatments in the future that will benefit patients.





Categories: General, Melanoma