Being told you have cancer can be one of the most traumatic experiences a person can go through. Sophia Smith, PhD, MSW, associate professor at the Duke School of Nursing (DUSON), has heard those words in her lifetime — twice.
As a teen in Poughkeepsie, New York, Smith was diagnosed with Hodgkin lymphoma; as a new mother in her mid-30s, she was told she had breast cancer. Smith has used her personal experience as a patient along with her professional skills as a research scientist and social worker to help develop a tool that helps cancer patients and their caregivers deal with the psychological trauma that can come with the disease.
For years, Smith has been helping develop Cancer Distress Coach, a mobile app that launched in May. Based on a similar app used for veterans of war who suffer from Post-Traumatic Stress Disorder (PTSD), the Cancer Distress Coach app offers stress relief tips and support networks while collecting data to further inform treatment of cancer patients, many of whom suffer psychosocial effects from the disease, Smith said. For example, survivors may have recurring stress symptoms such as flashbacks to the diagnosis or treatment. They might experience avoidance and skip checkups and other doctor visits because they associate provider care with their diagnosis. Constantly checking the body for lumps or irregularities is another symptom.
“Certainly it’s not the majority of patients, but it’s a significant proportion,” Smith said, noting that one in three of the 886 lymphoma patients she studied for her dissertation experienced either persistent or worsening symptoms over a five-year period. About 1 in 10 survivors reported full-blown PTSD. “My dissertation provided me with data to say, ‘Look, it’s a problem.’”
Smith’s journey to DUSON was an unlikely one in many ways. As the daughter of an Army medic, Smith always wanted to be a nurse. She was a good student and athlete. When she was 16 and in the middle of softball season, something seemed off. “I’d come home every day, and I’d be passing out on the couch, and then I started running this low-grade fever.”
Her father was on top of it. Tests were run and a diagnosis: Hodgkin lymphoma. For two years, Smith’s father drove her to Sloan Kettering Cancer Center for treatment that included chemotherapy and radiation with the hopes that the symptoms would disappear. “This was the ’70s. Cancer wasn’t curable.” Strategically making the two-hour trips into the city on Friday — so Smith could recover from the intense nausea and vomiting over the weekend — she managed to graduate on time with honors from high school. “My last treatment was a week before I graduated high school.”
Smith decided to go to college at State University of New York at Albany, close to home and the cancer institute, just in case. “I always wanted to be a nurse,” she said. “But when it came time to go to college, I had trouble walking into a doctor’s office or hospital without wanting to throw up. The smell of alcohol triggered it. I said, ‘I can’t be a nurse. I can’t do this. I can’t be around this.’”
An astute high school counselor suggested Smith pursue business, as she showed high aptitude in math. In her undergraduate studies, Smith’s interest in technology sparked, ultimately leading to a prestigious, high-paying position at IBM — a far cry from nursing. She continued her medical checkups every six months. No more cancer, but at one point an overactive thyroid was discovered — a late effect from treatment — that resulted in removal of most of Smith’s thyroid. But other than that, Smith’s life seemed to be settling into a healthy and normal routine.
Smith married and continued climbing the corporate ladder at IBM. Two months after she learned she was pregnant with twin girls, Smith was offered a position in IBM’s new office opening in Research Triangle Park. Her husband was thrilled to move south, so they took the plunge. But when her daughters were 17 months old, and while she was on maternity leave (at the time, IBM offered three years’ leave), Smith discovered a lump in her breast. She went to see her doctor at the Duke Cancer Center. “It was likely radiation-induced,” she said. “Now they’ve come out with studies: about one in three lymphoma patients who would receive mantle radiation developed breast cancer.”
The surgeon who performed her lumpectomy decided to pursue the lumpectomy despite a benign needle biopsy result. “They didn’t go deep enough,” she said of the biopsy. “So that’s one reason why I love Duke. Dr. George Leight saved my life.”
Even while recovering, Smith still considered herself an IBMer on leave, caring for her small children, but she was feeling socially isolated. Following her treatment, Smith’s husband urged her to volunteer. She decided on the Duke Cancer Patient Support Program (DCPSP), which she had participated in as a patient. “Once a week, I’d come in and hand out cookies and drinks and talk with patients about their families and challenges.”
Her volunteer experience changed everything. The DCPSP director noticed Smith had a knack for dealing with the patients and asked her if she ever thought about going into social work. Smith said it hadn’t even crossed her mind. “What is social work? I didn’t even know.” After some soul-searching and more words of wisdom from her husband, Smith realized her corporate life was over. She left IBM and entered the School of Social Work at the University of North Carolina at Chapel Hill (UNC). While at UNC, Smith was drawn to the research aspect of social work; her business acumen and math and technology skills proved valuable. She went on to earn her PhD in 2007.
“I fell in love with research and realized there was a lot of need out there, especially for long-term cancer survivors like me who are the first cohort that’s surviving cancer,” Smith said. “We’re told to go back to our life. But your life is different now, and what does it all mean?”
Smith said her idea to focus on PTSD in cancer patients came when she was trying to pick a dissertation topic. She had joined an online listserv run by the Association of Cancer Online Resources (ACOR) that helped her chat with other cancer survivors about some of the things they were going through, many of whom were diagnosed with depression and anxiety. But Smith said their symptoms didn’t quite fit the diagnosis. “I started talking with some of my other colleagues and students, and they said, ‘What you’re describing kind of sounds like PTSD.’” Coincidentally, the 4th edition of the Diagnostic and Statistical Manual of Disorders (DSM4) had just been released, adding life-threatening illness to the list of traumas than can have mental effect. “So in addition to war, in addition to sexual assault, now they were including things like cancer as a trigger.”
Smith focused her research on studying non-Hodgkin lymphoma patients — a more serious cancer than the Hodgkin lymphoma she survived. She took a position as a research scientist at the Duke Clinical Research Institute (DCRI), but it was at the week-long NIH Mobile Health Summer Training Institute in 2011 that the light bulb went off. “I know cancer-related PTSD is a problem. I wonder if anyone has developed an app for that.” She immediately found PTSD Coach, the app for veterans, but nothing specific to cancer. Smith contacted the developers of the app, and they agreed to collaborate to modify one for the cancer community. She worked for years on the app at DCRI until her faculty appointment to DUSON in 2014, which allowed her to submit her idea for pilot funding, which was granted.
The original pilot study included 31 cancer survivors using the app for eight weeks. The app has a self-assessment tool, along with suggestions for local and national support groups. But the crux of the app, which is still in the study phase, is the skill-building, Smith said. “We have guided meditations. We have relaxation exercises. We have something called the RID tool, specific to PTSD.” (RID stands for Relax, Identify the Trigger, Decide Your Response.) Some other tools include customizing music or downloading soothing photos to look at. “So if they’re stressed in the clinic, if they’re waiting on results from their mammogram, they can automatically go to the songs that are soothing to them.”
For the current study, a control group will receive the assessment and support tools but not the skill-building. “We’re not giving them the meaty part,” Smith said. “We want to see if that meat — the meditation, the relaxation, the RID tool — makes a difference.”
Recruitment for the app, which is available as a free download from the App Store and Google Play, is national. The hope is that it will not only help cancer survivors and their caregivers find ways to cope with the stresses in their lives but also improve patient care via the amount of information researchers like Smith will come away with.
The long-term goal is to implement the app in clinical care, Smith said. Currently, cancer patients at Duke receive excellent support through the DCPSP that Smith found herself at decades ago. The hope is the app complements these services and taps into critical emotional and mental stress areas that may not be obvious at first but that are a big part of cancer survival. “Awareness among the cancer community is critical as identification of PTSD in our cancer survivors is very difficult. That’s why I want to put it in their hands. It’s going to require them to be proactive, and we are passionate in getting the word out.”