Oct 26, 2016
By Shira Klapper, Senior Writer/Editor
Over the past few decades, there has been a growing awareness that a patient’s cancer journey is not only a matter of quantitative metrics such as overall survival and time to progression; equally important are the emotional challenges patients may face in navigating an unfamiliar, complex health system—scheduling multiple appointments, accessing information on symptoms and side effects, and identifying the specific support staff who can help in emergency situations. Research shows that challenges in navigating this system can have a profound effect on patients’ quality of life.
A new study in the Journal of Oncology Practice (JOP) sought to find out more about the specific challenges patients face in trying to make sense of this system, focusing specifically on survivors of ovarian cancer. The study, “’Little Big Things’: A Qualitative Study of Ovarian Cancer Survivors and Their Experiences With the Health Care System,” published online ahead of print, September 6th, carried out focus groups with 16 survivors of ovarian cancer at Johns Hopkins Hospital.
The study found that several factors contributed to patients’ positive experience: Treatment with a consistent provider, personal touch, and patient advocacy. The survivors emphasized that systems-based challenges, and not patient-provider interactions, were the greatest source of dissatisfaction. These challenges—described by one survivor as the “little big things”— included scheduling, wait times, pharmacy, transportation, parking, financial issues, insurance, and discharge.
Positive interactions with providers foster trust, optimism, and hope
The women who participated in the focus groups said that having a consistent provider with a strong knowledge of their medical history was an invaluable aspect of care. The participants also said that positive relationships with providers can be defined as intimate and collaborative, and inspire feelings of trust, optimism, and hope. Patients also spoke positively about instances when providers connected them to needed resources and other providers. A major negative theme that arose among participants was the feeling of not being able to get complete information about their medical situation or available resources, whether medical, psychological, or financial; this feeling reinforced patients’ belief that they were left on their own to access the care and resources they needed.
The study’s corresponding and senior author, Ana I. Tergas, MD, MPH, of Columbia Medical School, said the study reinforces findings from previous research.
“In a recent qualitative study, published by Frey, et al., addressing the goals of care of survivors of ovarian cancer, communication between patient and provider was consistently reported as an essential aspect of a patient’s experience. The findings of our study emphasize and expand on this concept by identifying the importance of communication beyond that of the doctor-patient relationship—communication must occur on multiple levels throughout the patient’s health care experience.”
Timing is everything
When it came to long wait-times and scheduling difficulties, participants agreed that these were some of the most challenging issues they encountered. While patients understood that providers had to reschedule at times, patients felt they should have been foretold about these contingencies from the start, so as to be better prepared psychologically.
Patients’ solutions: provide more written resources and assign care teams
To improve the patient experience, participants suggested that every patient should have a care team, comprised of nurses, financial and insurance personnel, social workers, and other staff. This staff—who would be familiar with the available physical, psychological, and logistical resources that patients need—could coordinate the various components of care, thus lessening patients’ burden. Participants also suggested that information about resources, as well as the names and phone numbers of the appropriate staff to call in different situations, could be compiled in a written list and distributed to patients.
Dr. Tergas said that while these solutions seem to be “common sense,” systems-based burdens on patients are commonly overlooked. However, she said, this study “provides a feasible road-map for addressing these burdens and improving patient satisfaction. The study was carried out with patients with advanced ovarian cancer, but presumably these issues would be similarly faced with any advanced cancer patient requiring multi-disciplinary care. The issues identified are not insurmountable and can begin to be addressed without undue burden on clinical practices.”
Ana I.Tergas, MD, MPH, is a clinical instructor in gynecologic oncology at Columbia Medical School.
Abstract of the original JOP article.
PDF of the original JOP article.
Roche KL, Angarita AM, Cristello A, et al. “Little big things”: A qualitative study of ovarian cancer survivors and their experiences with the health care system. J Oncol Pract. Epub Sep 6, 2016.
The Exclusive Coverage series on ASCOconnection.org highlights selected research from JCO, JGO, and JOP, with additional perspective provided by the lead or corresponding author.
@ 2016 American Society of Clinical Oncology