Real World Health Care Blog

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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.

Cancer Affects More Than the Body

As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC), including its Gilda’s Club affiliates, is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community.

Hildy Dillon, Vice President, Education and Support Programs, Cancer Support Community

CSC achieves its mission through three areas: direct service delivery, research, and advocacy. The organization includes an international network of nearly 50 local CSCs and Gilda’s Clubs with 120 satellite locations hat offer the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research & Training Institute conducts cutting-edge psychosocial, behavioral and survivorship research.

This article is excerpted from CSC’s Frankly Speaking about Cancer: Treatments & Side Effects, which can be downloaded from CSC’s website.

Talk to Your Doctor

Cancer not only affects your body, but it also has an impact on your thoughts, feelings, beliefs and attitudes. If you or your loved ones have received a cancer diagnosis, know there are actions you and your health care team can take to improve your emotional wellbeing during this experience. Emotional distress is very common. Professional help is advised if depression or anxiety is affecting you; do not be hesitant to obtain expert assistance.

Emotional Distress

Finding out you have cancer can be very challenging. Allow yourself time to adjust to the news. The emotional impact of a cancer diagnosis on an individual or family can vary greatly.

There may be shifts in different aspects of your life, including issues related to self-esteem and body image, family and friendship roles, financial resources and day-to-day activities. Because of these changes, you may experience a wide range of emotions including shock, fear, anger, sadness, thoughts about death, and helplessness.

However, when these feelings interfere with your ability to carry out normal daily functions, you may consider whether you are experiencing depression and/or anxiety. Some people experience depression and anxiety after a diagnosis of cancer, while others may already have a history of depression. Caregivers and family members may also experience depression and/or anxiety.

While it may be difficult, it is important to acknowledge whether you think you might be experiencing symptoms of depression and/or anxiety. If left untreated, depression and anxiety can impact your quality of life. For example, you may decide to skip doctors’ appointments because you feel like you can’t get out of bed or leave the house.

Talk with your health care team if you believe you are experiencing depression and/or anxiety to learn about treatment options. Treating emotional distress is just as important as treating your physical body. Do not neglect this important part of your care.

How Much Emotional Distress is Normal?

Some signs or symptoms that might indicate professional help is required to manage feelings of depression and anxiety are:

  • Sadness or worry so severe that you miss or postpone your treatment appointments
  • Fear that leads to panic or an overwhelming sense of dread
  • An inability to make decisions or difficulty concentrating
  • Extreme irritability or anger
  • Feeling despair or hopelessness
  • Constant thoughts about cancer or death
  • Feeling worthless
  • Lack of interest in activities that previously provided pleasure
  • Sleeping less than 4 hours per night or having difficulty getting out of bed
  • Having no appetite for a period of weeks

Coping Tips

  • Talk to friends, family or spiritual advisors about your feelings and fears.
  • Make an appointment with a counselor, therapist or psychiatrist to help deal with your thoughts and feelings.
  • Join a support group.
  • Ask your doctor about medications that can help.
  • Focus on living in the moment.
  • Use relaxation techniques to reduce stress.
  • Engage in physical activity you enjoy several times a week.

Value of Support

Cancer and its treatment may pose profound challenges to any individual or family. Yet, the idea of knowing you are not alone can be meaningful and significant in learning to cope with a cancer diagnosis. It is helpful to find people with whom you can share and express your feelings.

People cope with their emotions in different ways. Whether it is talking with a family member or friend, through individual therapy, or in the context of a support group, expressing emotions with others can:

  • Decrease anger
  • Improve self-confidence and assertiveness
  • Improve an individual’s expression of support, empathy, interest and humor
  • Improve physical functioning
  • Improve your overall quality of life
  • Decrease feelings of isolation

Cancer Support Helpline

The Cancer Support Helpline is staffed by mental health professionals who have over 170 years of combined experience helping people affected by cancer. They are available to provide emotional support as well as information and referral to local, regional and national resources to anyone impacted by a cancer diagnosis. CSC counselors and resource specialists can be reached by phone or live chat from Monday through Friday, 9:00 a.m. – 9:00 p.m. Eastern Time. All of our services are provided to you in English and Spanish.

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.

 

Multiple Sclerosis: Overcoming Pain

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

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

Living with MS and Pain

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

Dawn Ehde, PhD, University of Washington School of Medicine

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

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

Integrated Care Approach

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

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

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

Opportunities in MS Pain Research

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

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

Challenges for MS Clinicians

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

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

Pain Management Therapies

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

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

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

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

Partnering with Patients

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

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

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

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