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Exploring the Psychosocial Needs of Patients with Myeloma

Value-Based Care in Myeloma - Multiple Myeloma
Caroline Helwick

VBCM: What do you see as the key psychosocial issues for patients with multiple myeloma?

Ms Varner: For patients and their caregivers, a big challenge is keeping up with the rapidly changing landscape of myeloma treatment. Many exciting new drugs are coming to the market, and there is a real push to get the latest information about them. Patients with myeloma often feel that the onus is on them to ensure that their providers have the most recent data. There is no one like a myeloma survivor to be really dedicated to getting this information. Patients who are not being cared for at academic cancer centers often worry that they may be shortchanged or miss out on the best treatments.

 

VBCM: At the time of diagnosis, what hits the patient the hardest?

Ms Varner: When diagnosed, most patients with cancer experience an existential crisis with fears about dying, and certainly patients with myeloma are no exception. With myeloma, the diagnosis may not easily be reached and during this interval—when lots of testing is done—the patient feels anxiety. This anxiety can come in addition to physical symptoms, such as bone pain and fractures. The diagnostic process is often associated with the unwanted “aloneness” and distress that comes with any cancer diagnosis. Fortunately, in myeloma we are seeing more and more support groups in which patients can share their feelings and get support from professionals as well.

 

VBCM: Specifically, what concerns do you see related to myeloma treatment?

Ms Varner: Especially for patients undergoing transplant, the psychosocial concerns are huge. Patients do not feel good, but the patient also has to identify a dedicated caregiver. Frankly, no patient should undergo a transplant without a full-time caregiver, and that caregiver must devote an enormous amount of time to caring for this person. Frequently, they must give up employment to do this. This means both the patient and the caregiver are out of work, which creates an overwhelming financial need. When things go well, full recovery may take 6 months to 1 year. And if there are complications from the transplant, the caregiver may be needed for the rest of the patient’s life. Certainly, the economic issues related to this create tremendous stress.

 

VBCM: Can you tell us more about the support that is available for patients with multiple myeloma?

Ms Varner: Many communities now have support groups that meet regularly for persons living with myeloma. Many of these can be found through the International Myeloma Foundation and Multiple Myeloma Research Foundation websites. There are also online support groups.

I run an online discussion group for hematologic cancers through the Cancer Support Community (www.cancersupportcommunity.org). The discussion groups are 90-minute text-based chat rooms facilitated by a mental health professional. My own group usually has 6 to 10 participants in a session, so everyone has time to share. Patients share their concerns, talk about how treatment is going, talk about personal issues, and generally support each other. In addition to the weekly meetings, each online group has its own discussion group available only to the members of that group to enable continuous dialogue 24 hours daily, 7 days weekly.

 

VBCM: Are there similar support groups for caregivers, and what are their concerns?

Ms Varner: Yes, we have caregiver support groups, and they are very powerful, because caregivers often have nowhere to go with their own problems. They do not want to trouble the patient. They are often balancing many things, because they have to pick up the slack where the patient left off. Caregivers have a real psychosocial burden, and they are often forced into the caregiving role by surprise. In addition to providing actual hands-on care to the patient, providing transportation and meals, and dealing with health insurance issues, they feel they must make decisions for the patient and provide encouragement and compassion. Caregivers need to take care of 2 people: the patient and themselves. They need self-care strategies for “the new normal.” Support and education groups can help.

 

VBCM: What is the Association of Oncology Social Workers and can it be a resource?

Ms Varner: Our organization (www.aosw.org) has approximately 1000 members around the world. We work in hospitals, academia, hospice, nonprofit advocacy agents, and in private practice. We currently offer a program specifically for caregivers called “Caring for the Caregiver: It Is a Marathon Not a Sprint” at more than 30 locations across the country. We are committed to advancing excellence in the psychosocial care of patients with cancer, their families, and their caregivers, and we champion interventions that enhance quality of life and survivorship. We can assist groups, communities, and individuals through counseling, stress and symptom management, care planning, case management, navigation, education, and advocacy. Through our speakers’ bureau we can bring this information anywhere it is needed.

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Last modified: May 20, 2015
  • Rheumatology Practice Management
  • American Health & Drug Benefits
  • Value-Based Cancer Care
  • Value-Based Care in Myeloma
  • Value-Based Care in Neurology