For patients and their families, the physical challenges of fighting cancer are difficult enough, but what often gets overlooked are the accompanying psychological and social problems. According to Hester Hill Schnipper, LICSW, chief of oncology social work at Beth Israel Deaconess Medical Center in Boston, Massachusetts, among the many emotions cancer patients experience are:
Fear, anxiety, and sadness concerning a range of issues, including what will happen to them during and after treatment, whether they will be able to work through treatment and beyond, and what will be the financial implications of their illness.
Concerns about self-image, sexuality, and friendships. Similarly, researchers at the H. Lee Moffitt Cancer Center and Research Institute in Tampa, Florida, who were studying African American patients with prostate cancer and their families found that patients had unmet needs in terms of dealing with fears of disease recurrence, while their spouses reported fears of not having enough information. The study called for culturally appropriate interventions that provide more effective communication with couples regarding symptom management and other key issues.1
Schnipper knows firsthand about these issues because she has worked solely with cancer patients for more than 30 years and is herself a breast cancer survivor. In addition, she runs an online breast cancer support group on the hospital's Web site.
However, not everybody seeks out the assistance of a social worker or a support group. Many barriers limit a patient's ability to join support groups, including the challenges of geography, scheduling, and overall fatigue. That is why increasing numbers of hospitals are exploring other options to provide cancer patients with vital support.
One such effort is a program called Pillars4Life, which grew out of a research program started at the Duke Comprehensive Cancer Center (now the Duke Cancer Institute) in Durham, North Carolina, in 2008.
Duke researchers brought the program to a group of 44 patients with advanced breast cancer as a pilot study to determine whether participation would reduce distress and despair and increase quality of life. The program is based on providing positive coping skills, spirituality, and meaning through the “7 pillars of personal recovery”: hope, balance, inner strength, self-care, support, spirit, and life review. “One of the reasons I liked it [was] because it was very structured,” says Amy Abernethy, MD, director of the Duke Center for Learning Health Care and the Duke Cancer Care Research Program, who led the research effort evaluating the program, noting that many other such programs are not as structured.
In a report summarizing the study, Dr. Abernethy and her colleagues concluded that improvements in coping skills, social support, self-efficacy, spirituality, and optimism were correlated with reductions in despair and distress.2 “One of the most important parts was routine screening and assessment,” says Dr. Abernethy. “There are so many things we can do if we ask patients the right questions and develop appropriate responses.”
Although the original effort was a success, researchers realized it would be difficult to implement in the real world because of its cost. That led to the development of Pillars4Life, a comprehensive, 10-week program that takes many of the same principles but delivers them through a group, telephone-based/video setting. Twenty sites nationwide, including Duke University, received funding through a 1-year LIVESTRONG grant to implement the program. Each site hopes to enroll approximately 100 patients drawn from all stages and all types of cancer. Caregivers also will be invited to participate. The goal of the telephone/video effort is to reduce costs as well as to reach more patients, particularly the underserved. Through the study, patients will be followed for approximately 1 year, and the first group is slated to start at Duke University in December 2012.
There are so many things we can do if we ask patients the right questions and develop appropriate responses.—Amy Abernethy, MD
At the same time, Duke is launching a pilot study to determine the effectiveness of the program. “As oncology social workers, we don't have a lot of programs that are based on manuals and require credentialing,” says Sophia Smith, PhD, a Duke research scientist and principal investigator for the study, which will evaluate the feasibility of implementing Pillars4Life by examining specific outcomes evaluating the effectiveness of the program based on 5 criteria: reach, effectiveness, adoption, implementation, and maintenance.
“[The program] is very personalized for the patient depending on where they are on the trajectory, and there are booklets and homework,” she says. “We're still building the evidence, though. It's still preliminary.”
Meanwhile, H. Lee Moffitt Cancer Center researcher Brian Rivers, PhD, who led the study on the experience of African American men with prostate cancer and their spouses, is busy designing better ways to improve communication and support among this group. Although more African American men are now screened for the disease, sociocultural barriers still exist with regard to education about side effects and other issues once patients have been diagnosed, Dr. Rivers says.
Their research revealed a lack of the following:
Communication between the patient and spouse, as well as with the health care provider;
Culturally appropriate information about available resources;
Knowledge of how to effectively manage side effects;
Ability to function sexually and its impact on patients' psychological and emotional well-being; and
Willingness to socialize.
“We need to further develop interventions for diverse populations,” Dr. Rivers says, adding that the majority of prostate cancer patients are treated in communitybased settings that generally do not provide follow-up care after treatment. “A lot of spouses didn't understand what prostate cancer was, and patients were unwilling to discuss the disease with their spouses.”
He and his colleagues are examining resources such as DVDs, survivorship care plans, navigational assistance, spiritual interventions, and mobile technology to educate patients and their spouses. They will be studying these efforts throughout Florida, primarily in community oncology practices.
How to Move Forward
At Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City, a large team of psychiatrists, psychologists, and social workers address patients' psychosocial needs. “The biggest psychological differences I see in treating cancer patients are the acute existential questions that come with a cancer diagnosis,” says R. Garrett Key, MD, an MSKCC psychiatrist and instructor. “They have to figure out how to move forward with this new level of uncertainty in their lives.”
The psychiatric team often prescribes medications to help patients cope and feel better, including antidepressants and antianxiety medications as well as those that help with nausea and insomnia. In addition to patient treatment, MSKCC also offers a family clinic that counsels family members. Among some of the studies that Dr. Key and his colleagues are involved in are:
An Internet-based, telephone support group for patients with mesothelioma. The majority of patients are older men who have been diagnosed after a long latency period after asbestos exposure. The objective of the group is to help patients feel less isolated and to learn about symptom control and other issues.
The Communications Skills Research and Training study, which examines ways that physicians communicate with patients regarding difficult topics, ranging from delivering bad news to dealing with anxiety. Physicians are videotaped with individuals playing the role of patients and then undergo training on how to communicate more effectively.
A clinical trial assessing psychotherapy for patients with advanced stage cancer that examines efforts to help patients approach the end of their lives with dignity and integrity and to help them find joy and meaning in their lives.