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Cognitive Behavior Therapy for Teens and Young Adults with Cancer

This week, Real World Health Care focuses on the special behavioral health issues that can impact teens and young adults with cancer. We are delighted to share information on this topic from the Association for Behavioral and Cognitive Therapies, and to feature insights from Tammy A. Schuler, PhD, a Licensed Clinical Psychologist and Director of Outreach and Partnerships for ABCT.

ABCT is a multidisciplinary organization committed to the enhancement of health and well-being by advancing the scientific understanding, assessment, prevention, and treatment of human problems through the global application of behavioral, cognitive and biological evidence-based principles. It seeks to decrease human suffering using science.

Supporting the Cancer Community

Real World Health Care: How does ABCT address the special needs of adolescents and young adults with cancer?

Tammy Schuler

Tammy Schuler, PhD, Director of Outreach and Partnerships, Association for Behavioral and Cognitive Therapies

Tammy Schuler: Adolescents and young adults (AYAs) and their families coping with cancer have a lot to deal with. The AYAs are dealing with a major, life-changing circumstance during a period of their life when they are also dealing with other huge changes and developmental milestones. ABCT provides a variety of information to this patient community on treatment for depression, anxiety, sleep, insomnia and other areas that AYAs may struggle with. We also offer a clinical directory in which people looking for cognitive behavioral treatment can find providers in their area. Some of these providers specialize in working with people and their families who are coping with cancer, and some of them specialize in working with young people coping with a range of concerns.

Reaching Out for Help

RWHC: What advice would you give an AYA or family member who may feel uncomfortable or unsure about reaching out to a cognitive behavior therapist for help?

TS: Normalizing it is important. Many AYAs dealing with cancer experience some sort of cancer-related behavioral health issue. Issues may not happen right away. They may come up at some point during treatment or when they’re recovering from cancer treatment and trying to get back to their lives, and even beyond. In fact, a lot of AYAs report that they experience struggles after cancer treatment is over.

It’s also normal for family members – especially caregivers – to experience a behavioral health concern, at any point after the AYA’s cancer diagnosis.

Behavioral health concerns can range from having more difficulty adjusting to or coping with the cancer than one might expect, to ongoing feelings of sadness, anxiety, worry, panic attacks, persistent insomnia, increased substance use, and other symptoms. If a distressing behavioral health symptom sets in and doesn’t let up, if a behavioral health symptom becomes really disruptive to day-to-day life, or if a person starts worrying that they might hurt or kill themselves, those are signs to reach out to a qualified therapist for help.

It’s perfectly okay to reach out to people who can help, including cognitive behavior therapists, no matter what. Cognitive behavioral therapists are used to working with people dealing with these kinds of concerns; and the sooner someone reaches out, the sooner a plan can be developed to help the person feel better. Be sure to carefully check the credentials of the therapist. They should be licensed to practice in the patient’s state and should be listed as members of professional organizations, such as ABCT or the American Psychological Association.

HealthWell’s Cancer-Related Behavioral Health Fund is a wonderful initiative for insured people who want to reach out to a cognitive behavioral therapist, but who are struggling with finances.

Fast Facts: Adolescents and Young Adults with Cancer

The following information has been excerpted from the full ABCT fact sheet, written by Glynnis McDonnell, Doctoral Candidate in Clinical Psychology at St. John’s University and a Psychology Intern with the University of Tennessee Health Sciences Center & St. Jude Children’s Research Hospital.

A cancer diagnosis can be upsetting for individuals of any age; however, the effects of a cancer diagnosis and treatment may be especially upsetting for people diagnosed as adolescents and young adults (AYAs). This period involves rapid physical and psychosocial development, and a cancer diagnosis can interrupt these developmental processes:

  • Treatment often leads AYAs to take a large amount of time off from school or work, affecting career and education plans.
  • Treatment can make the formation of romantic relationships difficult due to factors such as body image concerns, limitations placed on one’s activities, etc.
  • Treatment can lead to infertility, interfering with the ability to start biological families.
  • A potentially life-threatening illness can be especially startling for AYAs:
    • AYAs likely have a better understanding of the seriousness of their illness than child patients but are often unprepared to process the meaning of a serious disease as effectively as older patients.
    • AYAs are still in the process of developing a stable sense of self. Therefore, diagnosis and treatment of a serious illness during this period could have a different psychological impact than it does for older adults.

There is growing evidence that cognitive behavior therapy (CBT) is an effective treatment for many of the psychological difficulties faced by AYAs. CBT is a form of psychotherapy that draws upon the connections among one’s thoughts, behaviors and emotions. It cannot change the fact that this young person has had to cope with a difficult diagnosis, but it can help ease the related difficult feelings, including worry, sadness and guilt related to the cancer experience. It can also help the AYA process traumatic aspects of the cancer experience.

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 now accepting applications for our recently launched Cancer-Related Behavioral Health (CRBH) 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 our CRBH Fund and how you can support it by visiting www.HealthWellFoundation.org.

 

 

Strength in numbers: how peer support empowers those coping with cancer

Online peer support groups are growing and it’s easy to see why. Peer support groups offer those dealing with a difficult diagnosis such as cancer, the chance to find empowerment, support and guidance from other members who are going through a similar situation.

Inspire, which is an online patient-driven community, has grown to nearly 1.5 million members since its inception in 2005. The company has more than doubled its amount of registered users over the past three years. Of the 200 groups that can be found on the site about a third have joined one or more of the online community’s cancer support groups.

“Inspire co-founder and CEO Brian Loew wanted to create a safe, supportive community for patients to gather, and if members wanted to participate in clinical trials, then Inspire could help connect them to researchers,” said John Novack, communications director at Inspire. “We deeply believed from the start that we can accelerate medical progress, and as we’ve grown to more than one million members, we are helping to do just that.”

Online Kidney Cancer Support Community

In 2014, the Kidney Cancer Association joined Inspire to create an online community for those who were diagnosed with kidney cancer. Currently, the community has over 2,000 active members.

Bill Bro

Bill Bro, Vice President, Kidney Cancer Association

“As a kidney cancer patient, I know how valuable emotional support can be,” said Kidney Cancer Association Vice President Bill Bro.

All in all, the Kidney Cancer Association has about 100,000 members on its social media pages in addition to its presence on Inspire.

“To my knowledge, the Kidney Cancer Association’s Inspire community and Facebook groups constitute the largest kidney cancer support network anywhere in the world. Thousands of people are ready to offer their perspectives on treatment decisions as well as offer help to caregivers,” Bro said.

According to Sara Ray, senior director of research at Inspire, peer support groups have a positive effect when it comes to patients making decisions and exploring all of their treatment options.

“The collective clinical and experiential knowledge of the peer support group helps patients not only learn which treatments are available, but what they can expect from those treatments, said Ray. “Patients often feel those who are on the cancer journey have a ‘real-world’ understanding of treatments and are eager to learn from them. In addition, patients can learn about upcoming treatments and clinical trials. This knowledge empowers them to speak to their physician, learn more, ask better questions, and become active in treatment decisions.”

Changing the Face of Cancer Care

Essentially, patient support groups are helping change the face of cancer care. Online support communities allow patients to make informed decisions with help from their peers.

“Patients are smarter and more empowered,” Ray said. “Peer groups have become a way to crowdsource information. As ‘asking the hive’ becomes more and more popular, patients are able to use the combined knowledge and experiences of their peers to learn about new options, manage expectations, and take part in decision making.”

When it comes to the psychosocial aspect, online peer support communities offer a myriad of resources for their members.

“Inspire provides a place for patients to feel less alone or isolated by providing a place for those dealing with cancer to share their worries and concerns and receive validation, love, and support,” said Ray. “Further, Inspire provides a place where patients can brainstorm and plan, feeling empowered to make decisions. In addition, many patients and caregivers on Inspire express the desire not to burden loved ones by seeking emotional support. Inspire provides a place where patients and caregivers can express their fears, discuss their worries, or just vent in a space apart from their loved one. Often, communities have discussion channels specifically for caregivers.”

Ray also noted that with communities like Inspire, patients gain what they lack in cancer support.

“They can seek clinical information or emotional support,” she said. “If they have a rare cancer, they can find others like them. Peer support groups are not a one size fits all solution. They are just as effective for a patient who wants to check in only at times of testing and for the patient who visits the board daily to share side effect struggles. Moreover, patients gain a place to give back. Many patients enjoy ‘paying it forward’ by sharing their experiences and providing support to others.”

From a personal perspective, the Kidney Cancer Association has seen a direct impact with its patients within Inspire’s community.

“I’ve witnessed patients moving from feeling hopeless to hopeful in just a few months as the result of positive interactions with others online,” Bro said.

For more information on Inspire, go to inspire.com. For further information on the Kidney Cancer Association, go to kidney cancer.org.

To join the Kidney Cancer Association’s Inspire community, go to kidneycancer.me.

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.

 

Childhood Cancer: Financial Distress Hits Families Hard

This week, Real World Health Care focuses on emotional stress associated with childhood cancer. We hear from Jessica Cook, MSW, Patient & Family Services Coordinator for the National Children’s Cancer Society (NCCS), about the services NCCS offers to help patients’ families cope with the disease’s devastating financial toll.

Supporting Families

Real World Health Care: Tell us about the mission and goals of the NCCS.

Jessica Cook

Jessica Cook, MSW, Patient & Family Services Coordinator, National Children’s Cancer Society

Jessica Cook: The National Children’s Cancer Society (NCCS) tirelessly and compassionately supports families making their way through the daunting world of childhood cancer. With over thirty years of experience serving nearly 42,000 children, the NCCS has become a master navigator of this world, helping families get where they need to be-physically, financially and emotionally. Distributing more than $65 million to families over its lifetime, the NCCS is able to take a “no matter what” approach, creating a clear path through the labyrinth of childhood cancer and survivorship to help families stay strong, stay positive and stay together. Because no family should go through childhood cancer alone.

The average cost to treat a child with cancer is over $800,000.  The financial and emotional impact a diagnosis has on the entire family is devastating. The NCCS seeks to help unburden some of the financial devastation.  By providing transportation assistance, whether a family is local or needing to fly across the country, the NCCS ensures that the child is able to get to the life-saving treatment facility no matter what.  For families having to remain in the hospital or relocated from home, we offer a one-time per year emergency stipend to help with expenses like meals while in the hospital, insurance premiums, household expenses, prescriptions, car expenses, and child care.

RWHC: What other types of support programs do you offer?

JC: In an effort to alleviate some of the behavioral issues children diagnosed with cancer face, we offer a mentorship program. Studies indicate that a mentoring program increases adjustment post treatment, reduces children’s anxiety and increases both self-care skills and self -confidence.  Our program connects young adult childhood cancer survivors with children who are currently in treatment.  The mentor acts as a knowledgeable and experienced guide, a trusted ally and caring role-model throughout the school year.

Behavioral Health Challenges

RWHC: Do children with cancer face unique behavioral health problems that aren’t as prevalent in adults with cancer?

JC: Children with cancer may face unique challenges such as missing school, isolation from extended family and peers due to compromised immune systems, survivor’s guilt, anxiety, depression, and difficulties in school.

RWHC: Do children with cancer have a difficult time accessing behavioral health treatments?

JC: The biggest challenges families face involve insurance coverage, geographic location and time.  Frequently, facilities offer group work to help address some of the behavioral issues children and their families face, however many simply live too far or don’t have the time to make another trip to the hospital and are unable to benefit from the resource.  The NCCS recognizes the value of counseling for children with cancer and provides transportation assistance to ensure the child receives the support they need.  It is important to note, that while initially children may experience anxiety and depression, decades of research on the impact of pediatric cancer and the psychological and emotional functioning of children indicate that a minority of youth demonstrate a long-term clinically relevant distress. In fact, the majority of cancer survivors show good psychological functioning.

Let Your Child Be a Child

RWHC: What can parents do to help ensure that their financial distress does not add to the stress children are already under when they find out they have cancer?

JC: The most important thing that parents can do is allow their child to be a child. It is not the child’s role to be a part of financial discussions especially as it relates to their diagnosis.  When facing the financial challenges associated with their child’s diagnosis it’s important for parents to assess the personal impact the diagnosis will have on the family. Things to look at include loss of income, increased living expenses — such as child care and travel costs — and insurance coverage.  The increased expenses can seem overwhelming, but creating a monthly budget can help provide some understanding and control over their financial situation. Above all, it’s important that families understand that they are not alone.  There should be no fear or embarrassment when reaching out to resources, like the National Children’s Cancer Society, to help with the costs associated with treatment, and in discussing any financial or emotional concerns with members of their child’s treatment team.

Biopsychosocial Care Vital to Well-Being of Cancer Patients

This week, Real World Health Care brings you an interview with Jon Levenson, M.D., Associate Professor of Psychiatry at Columbia University Medical Center, and member of the American Psychiatric Association’s Council on Consultation-Liaison Psychiatry. Dr. Levenson spoke about some of the challenges facing psychiatrists and integrated health teams when caring for patients with chronic medical problems such as cancer.

Consultation-Liaison Psychiatry

Real World Health Care: What is the mission of the American Psychiatric Association’s Council on Consultation-Liaison Psychiatry?

Dr. Jon Levenson

Jon Levenson, MD, Associate Professor of Psychiatry, Columbia University Medical Center

Jon Levenson: The Council focuses on the psychiatric care of people who are medically ill. It recognizes that the integration of biopsychosocial care is vital to the well-being of patients and their families, and that full membership in the house of medicine is essential to the well-being of psychiatry. We achieve our goals through initiatives related to research, clinical care, education and health policy, working closely with other physicians, residents and medical students.

Medical Health Linked to Behavioral Health

RWHC: Behavioral health issues can strike just about anyone, but are there certain types of chronic medical illnesses that are particularly associated with a higher incidence of patients being at risk for developing behavioral health problems?

JL: Often, that link between medical and behavioral health problems depends on whether the medically ill patient has pre-morbid behavioral health problems. For example, if someone has a pre-existing complication such as an alcohol or opioid use disorder, they tend to be at higher risk of non-adherence to their medical treatment. Or, a long-time tobacco user diagnosed with throat cancer may need treatment for his or her nicotine addiction.

From the other perspective, there are certain medical illnesses, such as heart disease and cancer, that carry a heavy burden and come with various complications, which can lead to a higher risk of depression. When patients are first diagnosed with cancer, it can be very common to have acute emotional symptoms such as numbing, anxiety, sleep disturbance and depressed mood for about 7-10 days. If these symptoms endure — and often, they do not — the concern is that the patient may develop acute psychiatric disorders including major depression, generalized anxiety disorder and a group of disorders called adjustment disorders.

We also can’t discount the behavioral health problems associated with survivorship. The patient’s cancer may be in remission, but they may continue to suffer from psychosocial complications, including marked distress around the anniversary of their diagnosis, surgery or end of treatment. For some, the end of treatment can be particularly challenging because they are not being as monitored as closely, which can produce anxiety around living with an uncertain medical future.

Other concerns that our profession focuses on include sexuality, intimacy and fertility issues among survivors and problems relating to re-entry back into normal life such as difficulties finding a job or obtaining medical insurance due to their pre-existing condition.

Challenges for Care Teams

RWHC: What are some of the biggest challenges facing integrated health care teams in terms of making sure cancer patients receive the proper behavioral health screening and treatment?

JL: There are a number of issues, from ensuring that patients adhere to their oncological treatments to regularly screening patients for behavioral health problems using standardized programs such as the distress screening thermometer developed by the late Dr. Jimmie Holland or the PHQ-9 Patient Health Questionnaire. These tools give cancer treatment teams an easy-to-use method for routinely evaluating the behavioral health of their patients, not just during active cancer treatment, but also during ongoing outpatient monitoring.

Our Council works closely with other organizations such as the Academy of Consultation-Liaison Psychiatry and the American Psychosocial Oncology Society to collaborate, share knowledge and develop programs that will help patients and their families navigate the behavioral health challenges associated with chronic and life-altering illnesses. For example, we’re currently working on a position statement related to palliative care. We’re intent on improving the knowledge base around end-of-life care and the role that psychiatrists play.

RWHC: Do psychiatrists have a hard time finding a “seat at the table” in integrated cancer care teams?

JL: Today, cancer care is whole-person care. Virtually every comprehensive cancer center has a psychosocial oncology program with staff that works closely with the medical oncology teams and palliative care teams treating patients.

Consultation liaison psychiatry is well immersed in the medical setting, and from that point of view, we all have a seat at the table. While there can be challenges, we work to overcome them through training in acute and outpatient care settings with medical students, residents and fellows so they learn how to effectively develop and maintain that seat at the table. We work especially closely with medical students studying psychiatry to help them understand what consultation liaison psychiatry is and get them interested in the field, which enhances recruitment and long-term support for the field.

Consultation liaison psychiatrists are well-regarded advocates for patients and can help our medical colleagues understand how to screen for distress as well as get patients the support and therapy they need. Often, issues can be openly addressed and discussed with short-term psychiatric support that ameliorates the bulk of patients’ fears, anxiety and behavioral distress.

Encouraging Patients to be Open

RWHC: What advice would you give to a cancer patient who may be undergoing behavioral health problems associated with his or her cancer diagnosis, but who may feel uncomfortable or unsure about reaching out to a psychiatrist for help?

JL: First, they should know that help exists. If someone is suffering from acute distress such as debilitating anxiety, panic attacks or strong feelings of despondency, they should seek immediate help in the form of psychiatric support and pharmacotherapy. If they are hesitant to reach out directly to a psychiatrist, they can start by reporting their distress to their physician, nurse or someone else on their care team.

There are also a wide variety of patient support organizations — at least one for just about every disease in the book — that can provide information and support. Many of these organizations have “buddy programs” through which a newly diagnosed patient is partnered with someone who has been there before. These groups can help tremendously with feelings of isolation or differentness, and many offer both in-person and online support, so no matter where you live, help is only a click away.

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.

 

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.

 

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 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.