Donna L. Berry, PhD, RN, AOCN, FAAN
Creating more opportunities for patients to report their symptoms and treatment experiences is essential to providing patient-centered care, said Donna L. Berry, PhD, RN, AOCN, FAAN, addressing a packed hall of her colleagues at the Oncology Nursing Society Annual Congress.
“We’ve found that providers don’t always hear what is important to the patient,” said Berry, who described some of the research she and others have conducted to explore new ways to improve patient– provider communication. Berry, this year’s Mara Mogensen Flaherty Lecturer, directs the Phyllis F. Cantor Center for Research in Nursing and Patient Care Services at the Dana-Farber Cancer Institute in Boston, Massachusetts. The Flaherty lecture is an annual presentation at the ONS Congress to spotlight best practices in managing the psychosocial aspects of cancer.
Berry explained that clinicians need to create an environment where cancer patients—as well as patients with other conditions—can feel comfortable expressing their concerns and are empowered to engage in self-care. She said that making sure that patients receive—and comprehend—accurate information about their disease is paramount, but just as important is understanding what personal factors each patient brings to the table when deciding on treatment. Such factors typically include the patient’s age, anxiety level, influence of others in their decision-making process, and worries over quality of life (QoL) following a cancer diagnosis.
A more thorough understanding of these personal factors would help clinicians to target their education to match each patient’s priorities, said Berry. “We can’t mass-produce something that’s customized to each patient on a piece of paper or in a binder,” said Berry.
“We provide informed consent, we provide patient education, we provide reams of material, but do we help patients navigate these decisions? How do we prepare them, and how do we honor the part of their lives that is not with us in the clinic?” asked Berry.
To help meet this challenge, Berry and colleagues developed the “Personal Patient Profile–Prostate” (P3P), drawing on their previous research and interviews with a group of patients diagnosed with localized prostate cancer. P3P was designed to spontaneously generate tailored and customized education and coaching for patients, based on their individual responses to an electronic questionnaire focused on what and who is influencing their treatment decisions.
The intervention also allowed patients to choose the type of tailored education they believed would be most beneficial, including coaching on how to tell their doctor what is most important to them and to discuss such topics as erectile dysfunction and bowel problems. Berry noted that the coaching videos were customized according to both race and age, so that patients could see people like themselves engaging in these discussions with their providers. Other topics for coaching support, which utilized various combinations of text, video, and graphics, included understanding statistics, current symptoms, and informational websites.
Men who received the P3P intervention reported significantly less conflict in making their treatment decisions, Berry said. In addition, men who felt more prepared for their treatment decision visited their physician more often and had read literature provided by the clinic.1
Helping patients to make informed decisions about treatment is an important first step, but challenges remain when treatment begins. “It’s quite an understatement to say that patients need support during treatment,” Berry continued. “The patient’s experience, their symptoms, and their quality-of-life concerns are incredibly important to the safety and deployment of treatment. We can’t safely treat our patients unless we hear what the effect of their treatment is on each one.”
Berry, in her prior role mentoring clinicians and students at the University of Washington, worked with nurses at the UW Medical Center in Seattle to develop another electronic tool, the “Electronic Self-Report Assessment for Cancer (ESRA-C)”.2
“Together, we decided that we needed to improve our ability to capture the patient’s experience, and it had to be timely, it had to be accurate, and it had to be efficient.”
As part of the initial ESRA-C, patients completed a series of symptom questionnaires, generating a color-coded report allowing clinicians to see clearly those areas marked in red where patients were experiencing the most difficulty.
The randomized trial found that patient symptoms and QoL concerns were addressed significantly more often when the ESRA-C summary was available to clinicians. Researchers also looked at which symptoms tended to get more attention, and Berry reported that discussions of nausea and pain were more often initiated by clinicians, whereas discussions of fatigue and sexual concerns more often by the patient.
She and colleagues refined the original ESRA-C to maximize patient self-care strategies and improve symptom outcomes. ESRA-C-II encouraged patients to report their symptoms and other aspects of their treatment experiences via their home computers or clinic computer stations. Those reporting symptoms were coached with three messages: why does this happen, what can I do about this, and what do I tell my clinical team?
Berry reported that the new intervention significantly reduced symptom distress over the course of ambulatory cancer therapy, especially in patients aged 50 and older. This age group, said Berry, “needed this push to make a difference.”
With funding from the ONS Foundation, sponsors of the Flaherty Lecture, Berry is working with colleagues to develop a linguistically and culturally appropriate version of the instrument, which will be tested in another randomized trial for Spanish-speaking patients.
Berry hopes the initiatives described here may serve as exemplars for other healthcare professionals in their practice. She urged her colleagues to pay attention to those influential factors and sometimes confounding interests that their patients have so that “we can truly help them navigate and negotiate the experience of going through cancer therapy.”
Berry DL, Halpenny B, Hong F, et al. The Personal Patient Profile-Prostate decision support for men with localized prostate cancer: a multicenter randomized trial. [published online December 9, 2011] Urol Oncol.
Berry DL, Blumenstein BA, Halpenny B, et al. Enhancing patient-provider communication with the electronic self-report assessment for cancer: a randomized trial. J Clin Oncol. 2011;29(8):1029-1035.