Compass Oncology’s Survivorship Group Support Program

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Jun 15, 2015

Dr. Maggie Solti explains the breadth of survivorship and support resources available at Compass. 

Serious diagnoses and men: a growing emphasis on mental health
By Cliff Collins
For The Scribe
June 15, 2015

As psychosocial support for patients with serious or chronic illnesses becomes more prevalent, programs that treat such patients find that men sometimes have specific needs. 

Mental health specialists say these can include needs as a patient or as a caregiver to a partner, either role of which can manifest in high stress. They add that men also are generally less receptive to participating in traditional support groups, an exception being if a group is devoted to education about particular aspects of a disease or on a specific disease itself.

For example, Compass Oncology’s group support is built on six different modules related to common symptoms, said Magdolna Solti, MD, a medical oncologist who directs the Compass Survivorship Program. These topics include fatigue and sleep, chemotherapy and
neuropathy, sexuality, emotional issues such as anxiety, nutrition and exercise. Program staff includes three social workers and a palliative care oncologist. “Support starts at the diagnosis,” not after treatment, she explained. The goal is to screen each patient to determine what that individual will be facing, whether it is physical symptoms, emotional symptoms such as fear, or financial concerns related to treatment. 

Group visits last 90 minutes and are moderated by the survivorship team, which tackles different topics each month. Each visit includes a presentation, group discussion and a question-and-answer session. Compass also offers 45-minute one-on-one visits with a physician assistant to help patients with the transition after treatment. 

An example of a support group for men focused on a single type of cancer is a prostate cancer group at Oregon Health & Science University’s Knight Cancer Institute. The group, co-facilitated by Peter Bennett, MSW, brings in expert speakers to explain subjects that are closely connected to the patients’ disease. A recent topic was sexuality and intimacy after treatment. “Sexuality is a huge issue for prostate cancer survivorship,” said Bennett. The speaker in that session focused on “redefining intimacy” and creating new ways to interact with a partner, he said. The format of having experts speak helps men be more open to discussion, whereas the sharing of experiences tends to be easier in, say, a support group for women with breast cancer, he said. A comparison could be made that women prefer “face to face,” while men are inclined to “shoulder to shoulder, working on an activity together,” he said. 

Ken Wizer, ND, a naturopath with Providence Health & Service’s Integrative Medicine Program, said he has found that male patients with serious illnesses tend to respond well “to working with a physician in a gentle, connected way” one on one. Integrative medicine plays a significant role in support services. The emphasis now is on wellness programs such as yoga, nutrition, exercise, massage therapy, acupuncture, mindfulness-based stress reduction, and retreats for people with cancer, according to Susan Hedlund, MSW,
LCSW, manager of Patient and Family Support Services at the Knight Cancer Institute. 

“In terms of integrative medicine, it’s absolutely a national movement,” she said. “What we have known for a number of years is that cancer patients were using integrative medicine, but not necessarily telling their doctors.”

That can cause problems for both physicians and patients, because self-directed alternative and complementary remedies may be contraindicated and conflict with standard treatment, noted Wizer. He said the original catalyst for the Providence program, now 12 years old, was that breast cancer patients asked for integrative medicine to be incorporated into their treatment. But “physicians wanted it, too,” because they wanted that type of care administered by practitioners they know and trust, he added. The program now has broadened to taking care of not just patients with cancer, but also heart disease and other illnesses, as well as for preventive medicine.

Mental health support services have received greater attention after the American College of Surgeons stipulated two years ago that cancer centers accredited as centers of excellence must offer survivorship and wellness services, Solti and Hedlund pointed out. This must involve not just a paper handout given to a patient, Hedlund said; instead, it must include services related to quality of life and “lifestyle change. We have more cancer survivors than we used to.” And, as a result, the issues they deal with such as pain and fatigue need to be addressed.

A problem is that such services often aren’t covered by insurance, including Medicare and Medicaid, Hedlund noted. For the program she directs, nine social workers—each subspecializing in different types of cancer— have their salaries covered through OHSU Hospital, she said. But all other support services are funded through Knight Cancer Institute’s foundation, which fills in the funding gap that often plagues cancer centers’ efforts to include support services, she said. The Affordable Care Act’s emphasis on promoting less expensive care may bode well for these services to be covered in the future, she added.

A recent study by the British Psychological Society identified key markers for vulnerability to psychological problems in men experiencing cancer. The findings indicated that participants who were separated or divorced had lower social support and greater depression.
Younger age was related to higher anxiety and distress, and living in an area of higher economic deprivation was associated with greater depression and anxiety. Social support in general was a key indicator of psychological health.

Noting that psychological problems in male cancer patients are an “area that has been historically neglected in the literature,” the authors wrote that “it is important to target those at greatest risk of psychological problems following a diagnosis of cancer for psychosocial
support. ...Men typically have smaller networks than women and often rely on their wives for support. Some men who are separated or divorced lack such support, which can leave them more vulnerable to depression.”

OHSU’s Bennett said, referring to his prostate cancer support group: “One thing I’ve observed is that some guys who are single participate more and put themselves out there more than those in a supportive relationship. It’s a great place for them to process their experience.” 

Men are often more reluctant than women to describe their symptoms and concerns, said Solti, a reason why Compass Oncology uses “biosocial screening” before, during and after treatment to gauge patients’ stressors and support system. Solti also helped develop support services for caregivers of patients. When men are the caregiver to their partner, “it’s a great stressor on their lives,” she said. If the female spouse or partner has cancer, communication can become a major issue, because some men will reduce treatment decisions to just, “Go and fix it,” rather than recognizing that the woman may feel anxiety about challenges such as how to tell their children about the diagnosis and how to care for the couples’ own parents. 

A Compass support group that meets primarily outside the office is for patients with testicular cancer, who generally are between the ages of 15 and 35. Being able to mingle with people in their own age range helps young men “to connect and realize they are not fighting this on their own,” Solti said, as well as helping them achieve a life balance to cope with the “novel anxiety that goes with partnership and dating after a cancer diagnosis.”

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