Advances in lung cancer care have made significant strides for people living with late-stage lung cancer. These include continuous discovery and evolution of both experimental therapies and clinically approved treatments. Patient centered care, another important advance, includes the person with lung cancer in the discussions surrounding their treatment trajectory. Finding the right balance between clinical outcomes and quality of life is key, and requires clinical providers to be well informed about treatment options, including clinical trials. For the patients themselves, previous studies have emphasized the importance of a good relationship with a trustworthy patient-care provider, open communication, and being valued as an individual. In order to better understand how to improve patient centered care for the lung cancer community, Dr. Morhaf Al Achkar, from the University of Washington, along with Casey Walsh, PhD, MSW, a member of the Biobehavioral Team as part of Fred Hutch’s Clinical Research Division, and colleagues from the LUNGevity Foundation and Morehouse School of Medicine, sought to evaluate patient experiences with their lung cancer oncologists and second opinion encounters. Dr. Al Achkar designed and led a qualitative interview-based study, recently published in Supportive Care in Cancer, to gather the lived experiences of patients living with advanced lung cancer. Explaining the main findings from their study, Dr. Walsh said “it has been invaluable to learn directly from patients with advanced lung cancer about their experiences with their oncologists. Our key takeaways include the importance of 1) communication skill training for oncologists to provide goal concordant care that respects and values patients’ preferences and fosters connectedness, 2) training in interprofessional collaboration in cancer care, and 3) ensuring second opinions are made available in an equitable way so the disparity gap can be closed.”
The tumors of the patient cohort surveyed had at least one oncogenic driver mutation, which may indicate eligibility for a clinical trial. The study participants, 25 in total, who were interviewed expressed varied opinions on their experiences with their oncology providers throughout their lung cancer journey. From a positive experience standpoint, participants described how having an oncologist who enabled patient autonomy in decision making, listened to their views, and with whom they felt a meaningful connection, greatly impacted their overall experience in a beneficial way. The participants also noted the advantages of having an oncologist who was actively involved in research or up to date on ongoing clinical trials who helped keep them informed on the spectrum of potential alternative treatments available. Conversely, participants highlighted how, in some instances, their oncologists responded to their opinions dismissively and did not wish to engage in discussions around emerging or alternative treatments, highlighting an ongoing need for better patient-provider communication.
Dr. Al Achkar next posed a series of questions to study participants to understand how this population navigated the task of requesting a second opinion. Often, participants requested a second opinion to ensure that their primary provider had prescribed the best treatment course, or to find out about alternate options such as enrolling in a clinical trial with experimental therapies. For those who sought specialist care, such as that of clinicians working in an academic or research center, interaction experience with specialists were mixed. Some participants reported feeling supported and encouraged by their treating specialist, especially with respect to managing their own treatment plan, while others felt that specialist care was lacking the personal feel of smaller community clinics. Lastly, the importance of collaboration between two care providers was noted as an essential part in ensuring a positive treatment dynamic, and that conflict between different clinical teams could cause undue difficulties for the patient.
The patient experience of those with advanced lung cancer is multi-faceted and the authors note that the patient group interviewed in their study primarily had access to private health insurance which greatly aided their ability to direct their own care, an option not available to all people with lung cancer. As Dr. Eugene Manley, Jr., PhD described “this study shows that we are just at the tip of the iceberg in incorporating the patients’ voice in care decisions. This also raised questions for further research about how patients who are not as educated or not as wealthy engage in treatment decisions for lung cancer.”
Engaging multiple voices in studies like these is essential to generate a holistic overview of experiences felt by patients. The Fred Hutch/University of Washington/Seattle Children's Cancer Consortium contributed to this goal by enabling the inclusion of additional opinions from stakeholders in the present study. Specifically, “this consortium was important because we were able to work with stakeholders that approach the Hutch cancer care continuum from different perspectives. This allowed us to comprehensively integrate the patient responses, caregivers, researchers, and those doing patient advocacy,” explained Dr. Manley Jr.
This work was supported by funding from the National Institutes of Health/National Cancer Institute.
Fred Hutch/University of Washington/Seattle Children's Cancer Consortium members Dr. Christina Baik and Dr. Casey Walsh contributed to this research.
Al Achkar M, Basu Roy U, Manley E Jr, Standifer M, Baik C, Walsh CA. 2022. A qualitative study of interactions with oncologists among patients with advanced lung cancer. Support Care Cancer. 1–7. Online version available ahead of print.