Nurse Scientist Christine Miaskowski: Four Decades Helping Patients in Pain
By Vicky Agnew | cancer.ucsf.edu | November 17, 2020
For 40 years, Christine Miaskowksi, RN, PhD, FAAN, has been investigating the causes of- and solutions for the debilitating side effects of cancer treatment. In recognition of her contributions as a nurse scientist, Miaskowski recently received one of nursing’s pre-eminent awards. Below, Miaskowski talks about her parents’ individual struggles with cancer treatment, advances in symptom management, and the emerging field of symptom science and genomics.
Q. Congratulations on receiving the prestigious Ada Sue Hinshaw Award from the Friends of the National Institute of Nursing Research. You are no stranger to awards and accolades. What does this mean to you?
As a nurse scientist for nearly 40 years, this award is the capstone of my research career. It recognizes my research team’s cumulative efforts to describe the extremely high symptom burden in oncology patients and their family caregivers and to develop and test interventions to decrease symptom severity and improve patients’ and their family caregivers’ quality of life.
Q. You have been working four decades as a nurse scientist with a focus on pain and symptom management. What made you decide to take up research, and why pain management?
My passion for symptom management research and pain in particular comes from very personal experiences. In 1974, when I was working on my Master’s in Nursing, my dad was diagnosed with laryngeal cancer. He underwent radiation therapy, a laryngectomy and radical neck dissection, and additional radiation therapy for recurrent disease. My dad died in intractable pain. In 1975, we knew nothing about post-surgical neuropathic pain in oncology patients. This personal experience led me to pursue a research career in pain and symptom management. More recently, our work has involved an evaluation of multiple co-occurring symptoms, particularly in cancer survivors. This work is motivated by my mom’s experiences as a survivor of uterine cancer. As a result of her treatments, mom experienced multiple gastrointestinal symptoms that severely limited her physical, psychological, and social well-being.
Q. Your vast body of research includes a focus on post-surgical pain and a resistance by surgeons to acknowledge it as a true clinical problem for a significant number of patients versus a psychological issue. Do you find this attitude persists today? How is persistent post-surgical pain treated now, especially amid concerns about opiates?
Our work on persistent post-surgical pain was inspired not only by my dad’s experiences – but by a woman who came to our Pain Center. I was working as the Clinical Nurse Specialist in a multidisciplinary pain team. It was 4 pm on a Friday afternoon. This 60-year old women shared her story with us. This woman’s story and her experiences motivated me to pursue this line of scientific inquiry after I completed my PhD.
She related how five years previously she had undergone a radical mastectomy for breast cancer and had severe incisional pain in her breast scar area and axilla since the surgery. At the time of her visit to the Pain Center, her pain was so severe – she could not move her arm at all. She shared that she had been told by numerous clinicians that her surgical incision was healed and that the pain “was all in her head.” She was hospitalized in a psychiatric institution as a – her words – “post-menopausal crock.” She shared with us her intention to commit suicide if we could not help her decrease her pain.
The process of discovery is a true adventure. The life of a scientist is not an easy one. It is extremely challenging road with numerous ups and downs. Therefore, one needs to be passionate about one's line of scientific inquiry.
The physician that I worked with in the Pain Center had trained at Memorial Sloan Kettering Cancer Center. He recognized this pain problem as “post-mastectomy pain syndrome.” In 1975, the pharmacologic treatment for this type of neuropathic pain was to use amitriptyline. Over the course of several months, her medication was titrated; she received counseling, and when the pain was under control, she participated in physical therapy and regained the use of her arm.
When I moved to San Francisco in 1988 and began my academic career, we were funded to do an epidemiological study of this relatively common post-surgical pain syndrome in oncology patients. I remember calling at least ten breast cancer surgeons to assess their interest in assisting us to recruit patients for this study. The majority were not aware of this pain problem. Those individuals who had heard of the syndrome shared with me that none of their patients experienced this pain problem. Our work demonstrated that this problem occurs in approximately 30% of patients following breast cancer surgery and persists in approximately 20% of patients.
Unfortunately, to this day – patients share with me that they are told their surgical incision is healed and the “pain is all in their heads.” While challenges exist in creating an effective pain management plan, this type of neuropathic pain can be treated with co-analgesic medications including gabapentin, as well as with the injection of a local anesthetic at the surgical incision site. In addition, some patients benefit from stress reduction techniques, physical therapy interventions, acupuncture, and massage.
Q. You’ve also done a great deal of research on the effects of exercise on treatment side effects. To what degree is exercise being incorporated by physicians into standard of care? In what ways is it equal to or better than drugs to manage side effects?
Both oncology clinicians and patients are becoming aware of the overall benefits of regular exercise to maintain health and well-being. In the area of symptom management, exercise is the only evidence-based intervention that is recommended by the National Comprehensive Cancer Network for the management of fatigue associated with cancer and its treatments.
Emerging evidence suggests that exercise is an effective intervention for fatigue in both oncology patients undergoing active treatment as well as in cancer survivors with chronic fatigue. In a descriptive correlational study, my research team provided evidence that oncology patients who did not exercise on a regular basis during chemotherapy reported higher levels of fatigue and sleep disturbance.
In addition, in a sample of cancer survivors with chemotherapy-induced peripheral neuropathy, we recently reported that survivors who did not exercise on a regular basis reported higher levels of interference with walking and general activity and had significantly worse balance test scores. Given that no effective pharmacologic treatments are available for fatigue and chemotherapy-induced peripheral neuropathy, clinicians can recommend regular exercise as a safe nonpharmacologic treatment for these symptoms.
Q. We are in the age of precision medicine for cancer patients. Where is the field of symptom management now in terms of genetics and genomics and side effects of treatment?
I prefer to use the term “precision health” rather than precision medicine. This initiative – which is focused on providing individualized care to patients – has the potential to decrease the burden of chronic illness and improve patients’ overall health status.
To be quite honest, the integration of symptom science and genomics is still in its infancy. That said, I believe this work has huge potential to uncover the fundamental mechanisms that underlie some of the most common unrelieved symptoms in oncology patients (e.g., pain, fatigue, cognitive impairment, nausea, sleep disturbance) and identify new targets for pharmacologic and non-pharmacologic interventions.
I and my colleagues, Drs. Kord Kober at UCSF and Yvette Conley at the University of Pittsburgh, have made this a major focus of our programs of research. For example, while vomiting is well controlled in patients undergoing chemotherapy, over 50% of patients report unrelieved nausea.
Recently, we completed a gene expression study that yielded surprising results. We hypothesized that perturbations in pathways involved in serotonin metabolism, drug transport, and drug metabolism would be identified in patients who reported nausea compared to those who did not report nausea. Quite to our surprise, none of these pathways were identified. What we did find was that pathways involved in gastrointestinal inflammation and the gut-brain axis were associated with chemotherapy-induced nausea.
While these findings warrant confirmation in an independent sample, they open up a new line of scientific inquiry on the potential mechanisms that can be exploited to treat this devastating symptom. Equally important, we completed a pilot study, funded by our Cancer Center, that demonstrated that pathways identified in preclinical studies of chemotherapy-induced peripheral neuropathy (namely, cytoskeleton, axon morphology, neuroinflammation, mitochondrial dysfunction) were perturbed in cancer survivors with this devastating pain condition.
The major impediment to moving this area of scientific inquiry forward is the lack of funding to support it. Less than 0.1% of the National Cancer Institute’s budget is allocated for symptom science and supportive care research.
Q. How has the symptom management curriculum for nursing and medical students changed since you earned your degrees?
It is sad to say – but not much has changed regarding clinicians’ level of education on symptom management. Over the past 45 years of my career as a nurse, most nurses and medical students receive approximately one hour of education on pain management.
Currently, the emphasis is being placed on the opioid crisis and the harmful effects of opioid analgesics – rather than on the management of pain. Even in cancer patients with significant pain problems, some clinicians and patients are worried about the development of addiction. While the opioid crisis warrants careful consideration and management, the risk of undertreatment of pain looms large. To me, it feels like we are going backwards instead of developing a rationale approach to both pain and addiction management in the United States and internationally.
In terms of the other common symptoms associated with cancer and its treatments (e.g., fatigue, cognitive impairment, peripheral neuropathy, nausea), most of the education on the management of these symptoms occurs “on the job.” For the master’s students who are enrolled in our Adult Gerontology Clinical Nurse Specialist Program, they take a 20-hour course that focuses on symptom management in patients with chronic conditions including cancer.
The real challenge for the effective management of common symptoms in oncology patients is that evidence-based treatments do not exist. The hope among symptom scientists is that a deeper understanding of the mechanisms that underlie these common symptoms will identify new therapeutic targets.
Q. Talk about the percentage of nurses who choose to conduct research in addition to patient care? Is it standard? What are nurses uniquely able to contribute to our understanding of treatment and care?
It is sad to say that fewer than one percent of nurses in this country have a PhD. It is interesting to note that this percentage has not changed since I started my nursing career in 1974. Most of the nurses who have a PhD are employed in academic settings. Compared to our physician colleagues, these faculty members often have extremely large teaching assignments and maintain active programs of research. Given their academic workloads, these individuals engage in a variety of clinical practice activities. Most of them do not maintain a large clinical practice.
Given the changing nature of oncology research and research in general – toward embracing a more transdisciplinary approach – nurses are uniquely suited to participate in these transdisciplinary research teams. Since the days of Florence Nightingale, whose 200th birthday we celebrate this year, nursing education is focused on the care of the whole person. Therefore, in the era of precision health, we are poised to make outstanding contributions to any project that is aimed at the identification of phenotypic characteristics that may contribute to better or worse disease and treatment outcomes.
For example, in our own work on the identification of the risk factors associated with a higher symptom burden in oncology patients undergoing active treatment and in survivors, the most common characteristics are not the type of cancer or type of treatments the individual received. The most common phenotypic characteristics associated with poorer outcomes include: younger age, being female, having child care responsibilities, having a relatively low annual income, being non-White, having high levels of stress, and experiencing loneliness. I would like to suggest that it is time to evaluate the whole person, not just the characteristics of the cancer, when we judge the efficacy of cancer treatments.
Q. What advice do you have for early-career nurses and people considering a career in nursing? Why should they consider research?
I must admit, that not every nurse is suited for or wants to pursue a research career. However, for those nurses who are considering this career option, I can honestly share with them that the process of discovery is a true adventure. The life of a scientist is not an easy one. It is extremely challenging road with numerous ups and downs. Therefore, one needs to be passionate about one’s line of scientific inquiry. One needs to develop timelines and achievable goals. In the end, what keeps me motivated every day is to improve the quality of care that oncology patients and their family caregivers receive – particularly through effective symptom management interventions that are evidenced-based.