Self-Management Tool Empowers Patients to Be Full Partners in Their Treatment

Dena Schulman-Green, PhD, a research scientist at the Yale School of Nursing

Dena Schulman-Green, PhD

When patients learn they have cancer or that their disease has progressed, it is an emotional, overwhelming time. A group of researchers looking to better equip patients to be self-managers of their cancer have developed a new tool to help patients understand their treatment options, steer the many transitions that come with a cancer diagnosis, and communicate their treatment goals with their healthcare practitioners and family members more effectively.

The intervention, Managing Cancer Care: A Personal Guide (MCC-PT) is a set of seven magazine-style modules that are concise, user-friendly, and can stand alone so that patients can choose whichever one(s) meet their particular needs at the time:

• Managing Your Symptoms
• Managing Your Care and Setting Goals
• Care Options
• Talking with Your Healthcare Providers
• Talking with Your Family and Friends
• Managing Transitions
• Managing Confidently During Uncertainty

Presenting the research team’s findings at the inaugural ASCO Palliative Care Symposium held October 24-25, 2014, Jessica Goldberg, MSN, said the impetus for the study came from the strong belief that “women should be involved in their care, and the evidence shows that breast cancer patients want to be involved.” Goldberg is an adult gerontology nurse practitioner and fellow in palliative medicine at Memorial Sloan Kettering Cancer Center.

For lead study author Dena Schulman-Green, PhD, a research scientist at the Yale School of Nursing, improving the decision-making process for patients had been a priority of hers since she was in graduate school 20 years ago and serving as a family caregiver for her aunt who had metastatic breast cancer. The experience showed her all of the difficulties that her family—including her uncle, himself a physician—were having in managing her aunt’s care:

“I remember thinking at the time, there just has to be a better way to do this.” Although there were training programs for healthcare professionals to deal with these issues, she thought, “what about a program for patients?”

The goals of the MCC intervention include helping patients understand what self-management is so that they can have a voice in their care along with their healthcare providers and family caregivers. The intervention also, through its Care Options module, articulates the differences between curative, palliative, and hospice care.

“When patients don’t know the difference between those types of care, Schulman-Green said, “It can be very difficult for them to make a care plan that reflects their goals.”

Another aim of the modules is to improve communication skills, so the patient feels more confident both to ask their providers questions about their care and to have those often difficult conversations with family members.

Managing the many—and often “tumultuous”—transitions that come with a serious illness was another objective of the MCC intervention, said Schulman-Green. “Though a lot of pieces in the patient’s life are shifting, these transitions also offer the patient the opportunity to sit down and revisit what their goals are and how the plan up until then might need to change to enable them to meet those goals.”

The multiyear study leading up to creation of the modules began with a needs assessment, which included a literature review and interviews with women who had breast or ovarian cancer to give the researchers a clearer idea of what their self-management needs were, Goldberg explained. The modules were then tested in a focus group of six patients to get their feedback before piloting the modules in a cohort of 23 patients with stage IV breast cancer and in a population study of 110 patients with stage I-III breast cancer.

Goldberg said that for the stage IV patients, the most popular and frequently used module was Care Options, adding that women across all the cancer stages expressed a desire to have had this information earlier. Patients with stage I-III breast cancer also found the Care Options beneficial, and for this group, Managing Transitions proved especially valuable.

Notably, said Schulman-Green, the MCC is “truly self-guided.” There is no coach, she explained, which “is a little unusual as far as self-management interventions go. We wanted something that required very few resources to implement. It is designed to be used with the other self-management partners.”

Goldberg added that the modules are purposefully small and include places for notes and checklists, so that patients could integrate the resource into their daily lives. “Among the positive feedback that we received from our patients is that they liked that they could take the information home. It wasn’t this overwhelming huge book.”

The next step is to study the intervention in a randomized controlled trial. The 2-year trial was launched in February, with funding from the National Institute of Nursing Research.

“Self-management is a partnership between the patient, the provider, and the family caregivers,” Schulman-Green stressed. “You need to educate all of the parties to be able to be on the same page and come together, each knowing what their role is.”

With that in mind, Schulman-Green said that she and colleagues have also received funding from the National Palliative Care Research Center to create a MCC intervention for family caregivers to be known as the MCC-CG.