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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 www.HealthWellFoundation.org.

Oncology Distress Screening: Integral to Patient-Centered Care

Oncology professionals and organizations around the world have come to realize the diagnosis and treatment of cancer can evoke significant levels of distress for cancer patients and their families. The Institute of Medicine’s 2008 report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, called attention to the importance of addressing the psychological and social problems associated with cancer and that leaving these need unmet could result in “. . .additional suffering, weaken adherence to prescribed treatment, and threaten patients’ return to health.”

Jeffrey Kendall, ,PsyD, Director of Oncology Supportive Care, University of Minnesota Cancer Center

Recognizing the critical need to assess and address the emotional and social concerns of oncology patients, the National Comprehensive Cancer Network (NCCN) issued a consensus statement recommending distress screening and management as a standard of care within oncology health services delivery. The term “distress” is used because:

  • it is less stigmatizing to patients and families than psychiatric diagnoses or psychological jargon,
  • it supports an understanding that distress is a normal process which ranges from mild to debilitating, and
  • it facilitates recognition that distress severity can change across the cancer continuum.

In 2012, the American College of Surgeons Commission on Cancer (CoC) added distress screening to its accreditation standards for cancer programs. These standards are designed to help accredited programs focus on patient-centered care with the goal of improving the quality of cancer care throughout the United States. Standard 3.2: Psychosocial Distress Screening states: 

The cancer committee develops and implements a process to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care.

To comply with this standard, cancer programs are required to screen cancer patients at least once during a pivotal medical visit over the course of treatment. The mechanism and method for distress screening is determined by the cancer program. Common approaches range from self-report patient questionnaires to clinician-administered questionnaires to clinical interview. The CoC prefers that patients are screened using standardized, validated instruments with established clinical cutoffs.

Despite this progress, distress continues to be under-detected and under-treated. When not addressed, distress has been shown to contribute to a number of negative patient outcomes including increased suffering, decreased quality of life for both patients and family members, reduced adherence with medical treatment, frequent and longer hospitalizations, and decreased survival odds. 

How Big is the Problem?

It is now accepted that 25-50% of all cancer patients experience significant levels of distress.1-3 Among these patients are two sub-groups: those who meet the criteria for psychiatric illnesses such as major depression, PTSD, or adjustment disorders (up to 25% of all patients), and patients who report distress levels that do not meet criteria for a psychiatric diagnosis but experience distress that significantly interferes with quality of life and functional status (15-20% of all patients).1-3 Using the term “distress” allows cancer programs to identify patients who fall into either of these two groups and provide interventions to reduce suffering and improve quality of life. It is important to remember distress and its intensity may fluctuate over the cancer trajectory. Distress levels may increase with recurrence, advanced disease, increased pain, disability, and symptom burden.

Screening Instruments

The difficulty cancer programs are facing in screening for distress might lead to an assumption that there is a lack of screening instruments that are brief and easy to administer, score, and interpret. Fortunately, this is not the case. There are many different types of screening instruments available to cancer programs. Among those most commonly used are:

  • NCCN Distress Thermometer

Endorsed by the NCCN Distress Practice Guidelines panel, this tool consists of a single item asking patients to rate their distress using a vertically aligned (thermometer) visual analogue scale with scores ranging from 0 (“no distress”) to 10 (“extreme distress”). The NCCN Clinical Practice Guidelines for Distress Management added a 34-item problem checklist to the Distress Thermometer to help in identifying the source of the patient’s distress. 

  • Edmonton Symptom Assessment Scale (ESAS)

The Edmonton Symptom Assessment Scale (ESAS) is a brief screening instrument developed for use with palliative care patients and validated with oncology patients. It consists of nine visual analogue scales for patients to rate the severity of the following nine symptoms: pain, activity, nausea, depression, anxiety, drowsiness, lack of appetite, well-being, and shortness of breath.

Screening Implementation: More Than Just a Screening Tool

For cancer care providers, selecting a screening tool and establishing a screening process are essential first steps, but they are only the beginning of developing a distress-screening program. Positive screens require an assessment by the appropriate psychosocial professional to determine the frequency, intensity, duration, and functional impact of the distress. The assessment may reveal the need for intervention and/or referral. After intervention, follow-up and further evaluation are needed ensure that the patient’s distress is minimized or eliminated.

Some cancer programs have internal professionals to assist in the assessment, intervention, and follow-up components of a distress-screening program. For example, patients might be referred to dietitians, social workers, psychologists, pharmacists, financial navigators, or specialists in spiritual care, palliative care, and rehabilitation—just to mention a few. However, even with in-house psychosocial professionals available, the procedures associated with referral, communication, and follow-up can be significantly challenging. Cancer programs that do not have oncology-trained psychosocial professionals available may work with resources in the community, including local social service organizations and universities, to develop a referral network that can help address distress.

A number of national organizations offer resources, tools, and peer-to-peer insights on support for establishing and improving cost-effective distress-screening programs for patients with cancer, including but not limited to the Association of Community Cancer Centers; American Psychosocial Oncology Society, Association of Oncology Social Work, American Society of Clinical Oncology, American Cancer Society, Leukemia and Lymphoma Society, and Cancer Support Community. Even pharmaceutical companies can provide resources for cancer patients within individual cancer centers.

Lessons Learned

The distress screening instruments should be brief; easy to administer, score, and interpret; and be non-stigmatizing to patients. Cutoff values and specific validity and reliability data should be empirically established. Distress screening is the most effective when the screening instrument is embedded within the electronic health record (EHR) and patients are screened prior to their caregiver appointments. This allows easy administration, reliable results, and immediate feedback to patients. Further, when positive screening scores create automated referrals to the appropriate psychosocial provider through the EHR, efficiency is maximized.

Finally, cancer programs need adequate staff to determine which screening instrument to use, develop the screening policies and procedures, evaluate and interpret the screening instrument, and develop the appropriate interventions and/or referrals. Anecdotally, we have found that the distress- screening process is helping us to uncover patient problems at an earlier point thus facilitating problem solving while these problems are still manageable.

References

  1. Zebrack B, Kayser K, Sundstrom L, et al. (2015) Psychosocial distress screening implementation in cancer care: An analysis of adherence, responsiveness, and acceptability. J Clin Oncol. 2015;33(10):1165-1170.
  1. Hegel MT, Moore CP, Collins ED, et al. Distress, psychiatric syndromes and functional impairment in women with newly diagnosed breast cancer. Cancer. 2006;107(12):2924–2931.
  1. Kendall J, Glaze K, Oakland S, et al. What do 1281 distress screeners tell us about cancer patients in a community cancer center? Psycho-oncol. 2011;20 (6):594-600.

Jeffrey Kendall, PsyD, is Director of Oncology Supportive Care for University of Minnesota Cancer Care. He serves on the Education Committee for the Association of Community Cancer Centers (ACCC), and served on the Advisory Committee for the ACCC Distress Screening education project, conducted in partnership with the American Psychosocial Oncology Society (APOS).

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 www.HealthWellFoundation.org.

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 www.HealthWellFoundation.org.

 

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 www.HealthWellFoundation.org.

 

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 www.HealthWellFoundation.org.

How to Get Over It: Fear of Vomiting

This week, Real World Health Care provides information on the fear of vomit by sharing an article originally published by the Anxiety and Depression Association of America. We encourage you to visit the ADAA blog to read or take part in the lively commentary discussion that follows the original post for additional insights. 

Editor’s Note: Nausea and vomiting are two common side-effects of chemotherapy. Even if cancer patients don’t experience these side-effects as part of their treatment, the threat looms large, which can have a significant impact on one’s quality of life.

Ken Goodman, LCSW, Clinical Fellow, Anxiety and Depression Association of America

If you have a fear of vomiting, just reading the title of this article might make you a bit queasy. The mere mention of the “V word” might send you into a state of anxiety. If you can relate, I encourage you to press on despite your worry, so you can take the first steps to overcoming it.

Emetophobia?

No one enjoys vomiting and everyone thinks it’s disgusting, but most people are not afraid of it. But if you suffer with this type of phobia (specifically known as emetophobia), you are not only repulsed by the idea of vomiting, you fear it. Many people say that the anticipation of vomiting is often worse than the act itself.

And because you don’t know when it will happen, you are constantly on guard, rearranging your life to ward off any possibility of puking.

What Causes Nausea?

Stomach discomfort and nausea can be caused by motion sickness, a stomach bug, food poisoning, excessive eating or drinking, food intolerance and…anxiety!

That’s right. Anxiety and worry can cause stomach discomfort and nausea. And if you don’t vomit when you’re anxious…you won’t!

Treatment Works

Treating vomit phobia is best accomplished through cognitive-behavioral therapy (CBT) and exposure and response prevention (ERP). Treatment involves correcting faulty beliefs, reducing avoidance, and confronting challenging situations step-by-step. You are given tools, a new perspective, a winning mindset, and a strategy for facing your fears. Your motivation for ending your suffering is important because the therapy does take time, hard work, and courage. You must have self-discipline and determination to win. And if you do…you can beat emetophobia!

Learn more about vomit phobia.

Ken Goodman, LCSW, practices individual and group therapy in Los Angeles to help anxiety and OCD sufferers free themselves from debilitating fear. He is the producer of The Anxiety Solution Series: Your Guide to Overcoming Panic, Worry, Compulsions and Fear, a step-by-step self-help audio program. Visit his website.

Now available – Ken Goodman hosts an ADAA webinar on “Overcoming the Fear of Vomiting.” Watch the video on ADAA’s YouTube channel.

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 www.HealthWellFoundation.org.

 

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, et.al. (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, et.al., (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 www.HealthWellFoundation.org.

 

 

Behavioral Health: A Costly and Often Untreated Aspect of Chronic Illness

Mental health is the costliest medical condition in the nation, according to the National Alliance on Mental Illness (NAMI). It devastates individuals, families and communities. For many, behavioral health problems do not exist in a vacuum; they are inextricably linked with serious medical illnesses such as heart disease, stroke, cancer and diabetes.

Krista Zodet, President, HealthWell Foundation

According to Mental Health America (MHA), the warning signs of behavioral health issues such as clinical depression are frequently discounted by patients and family members, who mistakenly assume feeling depressed is normal for people struggling with serious health conditions. MHA goes on to note that the symptoms of depression are frequently masked by these other medical illnesses, resulting in treatment that addresses the symptoms, but not the underlying depression.

New Real World Health Care Series

This year, Real World Health Care will bring you a year-long series on behavioral health issues associated with chronic illness. While we will cover a range of chronic illnesses, much of our focus will be on co-occurring disorders with cancer, a pervasive problem according to the statistics:

  • The risk of psychological disability is six times higher for adults living with cancer than those not living with cancer.
  • Adult cancer survivors are more than twice as likely to have disabling psychological problems as adults without cancer.
  • One-third of cancer patients who are more than a year removed from their cancer diagnosis continue to experience distress across a range of issues, including worrying about the future, feeling lonely/isolated, and financial concerns.
  • More than half of cancer patients do not receive social or emotional support as part of their care.
  • Only 14 percent of cancer patients receive behavioral health counseling.

Research finds cancer patients with certain behavioral health conditions, who are untreated, may not make sound medical decisions, may avoid helpful treatments, or may not adhere to medication or other therapies, notably worsening health outcomes. In addition, if left untreated, behavioral health disorders among cancer patients have been shown to negatively influence the underlying cellular and molecular processes that facilitate the progression of cancer.

These are some of the reasons why experts in the cancer field and other chronic disease areas are calling for integrated behavioral health services that will contribute to better patient care and reduce system-wide costs.

Subscribe Today

We encourage you to subscribe to this Real World Health Care series on Behavioral Health by entering your email address in the sign-up box on the right-hand side of this page. You’ll be treated to insights on programs and initiatives from individuals and organizations dedicated to making sure that those with chronic illnesses like cancer are also getting the behavioral health treatments they need.

Helping Cancer Patients Get the Behavioral Health Treatments They Need

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), they 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 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 www.HealthWellFoundation.org.

 

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.

 

 

Multiple Myeloma: A Rare and Complex Cancer

We continue our series on multiple myeloma with an interview with Gareth J. Morgan, MD, FRCP, FRCPath, PhD, professor of hematology and director of the Myeloma Institute at the University of Arkansas for Medical Sciences (UAMS). Dr. Morgan also serves as deputy director of the Winthrop P. Rockefeller Cancer Institute at UAMS.

Dr. Morgan is responsible for all clinical, research, and administrative operations at the Myeloma Institute, which is one of the largest programs in the world focused on the research and treatment of multiple myeloma and related diseases. Clinically, he directly oversees 8 physician specialists, 14 mid-level providers, and 7 hospitalists, all experts in the management of myeloma and related plasma cell diseases. He also manages 8 research teams, which represent an integrated program of the genetics and biology of myeloma.

Mechanisms of Malignant Transformation

Real World Health Care: What got you interested in the field of multiple myeloma and what keeps you inspired?

Dr. Gareth Morgan, University of Arkansas for Medical Sciences

Gareth Morgan: Scientifically, I saw the opportunity to exploit the transition of MGUS (monoclonal gammopathy of undetermined significance) to smoldering myeloma to multiple myeloma as a model to understand the mechanism that drives malignant transformation. I reasoned that if we understood these, we should be able to manipulate them therapeutically.

I continue to be inspired by the ability to translate the biology and genetics of myeloma into clinical practice, where better and less toxic treatments can and are being developed to help patients achieve better outcomes and increased survival. Patients are the true source of inspiration.

Myeloma Genome Project

RWHC: Tell us about your recent research work and its significance to the multiple myeloma patient community.

GM: This is an exciting time for the field of myeloma, and our research investigations have led to some exciting discoveries in the biology of myeloma based on the genetic variations within the human genome. With our colleagues in Europe, have identified eight new genetic variations that could be linked to an increased risk of developing myeloma.

We are also focused on developing a molecular classification of myeloma based on patient subgroups with distinct pathogenesis and clinical behavior. We have partnered with Celgene and the Dana–Farber Cancer Institute in establishing a global collaboration called the Myeloma Genome Project. The goal of this project is to compile and analyze the largest set of genomic and clinical data to design a molecular classification system to improve the diagnosis, prognosis and treatment of myeloma. Up to this point, we have collated the data that we already have, and now we are bringing other national and international investigators in to really form a global consortium. This data will help us identify patients who have distinct clinical outcomes, and allow us to take a stratified-risk approach to designing treatment strategies. This initiative could really lead the way in developing specific clinical trials for targeted treatments for patients in the future.

Personalized Medicine: The Future of Cancer Care

RWHC: What are the most promising new treatments for multiple myeloma? Are there any on the horizon that hold the possibility for a cure?

GM: I believe that stem cell transplantation remains the backbone of treatment for many patients, and we don’t want to move away from a strategy we know to be successful for many. So, we are now incorporating new treatments to increase cure rates and to give more patients higher and better responses overall. This involves moving away from the one-size-fits-all approach to a more directed, personalized one which includes the use of novel agents, immunotherapy, and targeted-based treatments.

Immunotherapy is one of the more exciting developments for patients with relapsed/refractory disease, and we are now looking at incorporating these agents into the newly diagnosed setting. Using different combinations of antibodies that address the different components of the immune system is going to be a really important way forward. In addition, the increased understanding of cancer genomics has given us a wealth of information about the biological processes involved in the initiation and development of myeloma cells, which has really powered the concept of developing targeted therapies directed at specific mutations at the molecular level. This approach, also known as personalized or precision medicine, clearly represents the future of cancer care.

Underlying Causes of Myeloma

RWHC: What are some of the biggest challenges facing multiple myeloma researchers?

GM: Some challenges myeloma researchers face include gaining a better understanding of the underlying causes of myeloma and designing prevention and early intervention strategies, as well as developing strategies to prevent precursor states of myeloma—MGUS (monoclonal gammopathy of undetermined significance) and smoldering myeloma—from developing into active multiple myeloma. Of course, funding remains one of the biggest challenges faced by researchers, and it probably always will be.

Increasing collaborations with university and industry partners provides an opportunity to gain access to much larger datasets and to develop clinical trials to help answer some of these important questions.

Overcoming Resistance to Multiple Myeloma Treatment

RWHC: What are some of the biggest challenges facing clinicians treating multiple myeloma patients?

GM: Over the last decade, we’ve seen an unprecedented improvement in multiple myeloma as novel agents and treatment combinations expand. Despite the vast improvement, there remains a proportion of patients who relapse and are more likely to have aggressive disease that is refractory to therapy. I think one of the challenges in myeloma is how do we treat and design strategies that can overcome treatment resistance for these high-risk patients to improve their long-term outcomes.

This challenge requires a change that focuses on the use of genetic analyses to segment myeloma at the molecular level to enhance risk segmentation to develop biologically-stratified treatment approaches. We are also exploring the use of imaging studies to recognize high-risk and DNA-based features. Collecting the sequencing and imaging data and analyzing it consistently provides a resource for the myeloma community that can continue to grow into the future.

Another important challenge facing clinicians is patient access to a myeloma specialist. Myeloma is a rare and complex cancer, so oncologists can’t use concepts developed for more common cancers, such as breast or colon, in myeloma. The key is having a focused strategy that is directed by a myeloma expert. Unfortunately, some patients don’t have access to a specialist because of location, insurance, or other financial restrictions. At the Myeloma Institute we incorporate a team approach, whereby our team of myeloma experts direct the treatment strategy and for practical purposes, patients can receive much of their treatment locally. So, if myeloma experts can partner with local oncologists who can then deliver some of the treatment, then it’s an ideal setting for patients, because they receive the benefit of a myeloma-specific strategy and risk stratification upfront, and in the long-term, they have the comfort and security of being close to home.