Susan Brandzel

The patient voice in research—evolution of a role

Plain english summaryEngaging patients in research studies is becoming more common because it makes research and its results more relevant for patients. It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to work on a research team but very little has been written about this from the patient’s perspective. As patient partners and researchers on a breast cancer study, we share our experience to develop a patient-centered project and the inclusion of patient collaborators as scientific experts. Over time, the role of the patient partner has developed to include unanticipated roles and responsibilities. We use our experience to share how the patient voice can affect the execution of a research study and to provide a model for meaningfully engaging patients in research.AbstractEngaging patients in research studies is becoming more common because it makes research and its results more relevant for patients. It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to work on a research team but very little has been written about this from the patient’s perspective. As patient partners and researchers on a breast cancer study, we share our experience to develop a patient-centered project and the inclusion of patient collaborators as scientific experts. Over time, the role of the patient partner has developed to include unanticipated roles and responsibilities. We use our experience to share how the patient voice can affect the execution of a research study and to provide a model for meaningfully engaging patients in research.

Latina and Black/African American Women’s Perspectives on Cancer Screening and Cancer Screening Reminders

IntroductionRacial and ethnic disparities continue to exist in cancer screening rates, especially among US Latina and Black/African American populations. We conducted six focus groups among 41 women from these communities in order to better understand their preferences about cancer screening reminders and the motivators and deterrents they face in obtaining recommended breast, cervical, and colon cancer screening.MethodsUsing self-reported patient race/ethnicity from electronic medical records of a large, integrated health care system in Seattle, we recruited women ages 30–60 to participate in one of five 2-hour focus groups. Using verbatim transcripts from these discussions, we conducted a qualitative analysis to identify common themes.ResultsThe focus group participants were primarily strong endorsers and utilizers of recommended breast, cervical, and colon cancer screening services. Insurance and belief in preventive care were the most common motivators that they cited in obtaining cancer screening. However, they still reported multiple barriers to getting recommended cancer screening for themselves and community members, including lack of time, conflicting information about screening intervals, distrust in the health care system, and a lack of understanding of the benefits of preventive care.ConclusionsEfforts to improve understanding about the benefits of cancer screening, clarify cancer screening guideline recommendations, increase cultural competency among health care professionals, and expand the times and locations where cancer screening is available are all options that may improve cancer screening rates among Latinas and Black/African American women.

Women’s experiences and preferences regarding breast imaging after completing breast cancer treatment

Background After treatment for breast cancer, most women receive an annual surveillance mammography to look for subsequent breast cancers. Supplemental breast MRI is sometimes used in addition to mammography despite the lack of clinical evidence for it. Breast imaging after cancer treatment is an emotionally charged experience, an important part of survivorship care, and a topic about which limited patient information exists. We assessed women’s experiences and preferences about breast cancer surveillance imaging with the goal of determining where gaps in care and knowledge could be filled. Participants and methods We conducted six focus groups with a convenience sample of 41 women in California, North Carolina, and New Hampshire (USA). Participants were aged 38–75 years, had experienced stage 0–III breast cancer within the previous 5 years, and had completed initial treatment. We used inductive thematic analysis to identify key themes from verbatim transcripts. Results Women reported various types and frequencies of surveillance imaging and a range of surveillance imaging experiences and preferences. Many women experienced discomfort during breast imaging and anxiety related to the examination, primarily because they feared subsequent cancer detection. Women reported trust in their providers and relied on providers for imaging decision-making. However, women wanted more information about the treatment surveillance transition to improve their care. Conclusion There is significant opportunity in breast cancer survivorship care to improve women’s understanding about breast cancer surveillance imaging and to provide enhanced support to them at the time their initial treatment ends and at the time of surveillance imaging examinations.

A qualitative study exploring patient motivations for screening for lung cancer

Background Low-dose computed tomography (LDCT) of the chest for lung cancer screening of heavy smokers was given a ‘B’ rating by the U.S. Preventive Services Task Force (USPSTF) in 2013, and gained widespread insurance coverage in the U.S. in 2015. Lung cancer screening has since had low uptake. However, for those that do choose to screen, little is known about patient motivations for completing screening in real-world practice. Objective To explore the motivations for screening-eligible patients to screen for lung cancer. Methods Semi-structured qualitative interviews were conducted with 20 LDCT screen-completed men and women who were members of an integrated mixed-model healthcare system in Washington State. From June to September 2015, participants were recruited and individual interviews performed about motivations to screen for lung cancer. Audio-recorded interviews were transcribed and analyzed using inductive content analysis by three investigators. Results Four primary themes emerged as motivations for completing LDCT lung cancer screening: 1) trust in the referring clinician; 2) early-detection benefit; 3) low or limited harm perception; and 4) friends or family with advanced cancer. Conclusion Participants in our study were primarily motivated to screen for lung cancer based on perceived benefit of early-detection, absence of safety concerns, and personal relationships. Our findings provide new insights about patient motivations to screen, and can potentially be used to improve lung cancer screening uptake and shared decision-making processes.