News and Opportunities

Patient-Centered Research and News

CMS and PFEN advocate for research that improves health and healthcare research that is patient-driven and focused. Each month, we highlight recent research from all over the world that utilizes patient, family, and provider perspectives, experiences, and engagement to improve health outcomes for diverse communities of all genders, sexualities, geographies, races, ethnicities, and languages.

The Changing Face of Lung Cancer: Survivor Perspectives on Patient Engagement

Asia-Pacific Journal of Oncology Nursing

Advances in the diagnosis and treatment of lung cancer have resulted in an increasing number of individuals living longer following their diagnosis. No longer is lung cancer the “death sentence” it once was. Researcher Margaret Fitch’s initiative was designed to document the current experiences of lung cancer patients and explore the potential for patient engagement. Three avenues of investigation were undertaken: a literature review regarding lung cancer and patient engagement, an environmental scan of lung organizations and cancer societies regarding their approaches to lung cancer patient and family engagement, and in-depth interviews with lung cancer survivors and family members about their experiences and perspectives about patient engagement. Information was collated and major themes identified. Evidence about the experience of lung cancer patients illustrates their needs are complex and dynamic. It also presents a clear picture of unmet physical, psychosocial, and spiritual needs. In particular, stigma is a significant issue for those diagnosed with lung cancer. Information, support, and communication play important roles in helping patients cope but access to resources remains challenging. Patients and family members expressed interest in becoming engaged in advocacy to improve care. The changing face of lung cancer creates the potential for lung cancer survivors to become engaged not only in participating in their own care but also become more involved in peer support and advocacy than lung cancer patients have been able to do in the past.

Information Needs During Cancer Care: Qualitative Research with Advanced Cervical Cancer Patients in Brazil, China, Germany, and the United States

Drug and Alcohol Dependence Reports

Information needs for advanced cervical cancer patients have not been well studied. Elizabeth A. Szamreta et al’s aim was to understand key drivers and barriers to seeking information, the best means of information delivery, and how this information affects the patient’s treatment experience. They conducted a qualitative study among international cohorts to assess the information needs of adult patients diagnosed with persistent, recurrent, or metastatic cervical cancer. Semi-structured interviews were held with patients of diverse demographic and socioeconomic backgrounds within two years of obtaining their cancer diagnosis. NVivo qualitative analysis software was used to identify themes that emerged from the data. In 2021, Szamreta et al. interviewed 98 patients from Brazil (n = 25), China (n = 25), Germany (n = 20), and the United States (US) (n = 28) with a mean age ranging from 38.6 to 54.2 years. Becoming aware of treatment options and understanding prognosis were key motivators for seeking cervical cancer information. This information made patients feel more informed and confident in their care. Physicians were the preferred distributor of information due to their credibility and ability to only share information pertinent to the patient’s specific stage and type of cancer. The primary challenges for seeking information were finding trustworthy resources, feeling overwhelmed with negative information, and understanding the content and relevance to their diagnosis. Szamreta et al. found that there is an unmet need for readily found information on advanced cervical cancer that is credible, easy to understand, individualized, and stage-specific. Providing patients with this information could help them achieve a more satisfying treatment experience.

Group-based Medical Mistrust and Care Expectations Among Black Patients Seeking Addiction Treatment

Drug and Alcohol Dependence Reports

Black patients seeking addiction care experience poorer treatment access, retention, and outcomes when compared to White counterparts. Black patients may have elevated group-based medical mistrust, which has been associated with poorer health outcomes and increased experiences of racism across multiple healthcare contexts. The relationship between group-based medical mistrust and expectations for addiction treatment among Black individuals remains untested. Trent Hall et al. recruited 143 Black participants from two addiction treatment centers in Columbus, Ohio to determine if group-based medical mistrust relates to poorer expectations of addiction treatment, particularly with regard to delays in care-seeking due to concern for racial discrimination, projected non-adherence, and fears of discrimination-precipitated relapse. Hall et al. assessed participants for relationships between group-based medical mistrust and expectations of care. Group-based medical mistrust in Black patients was associated with self-reported delay in accessing addiction treatment, anticipation of racism during addiction treatment, non-adherence and discrimination-precipitated relapse. However, non-adherence to treatment was least strongly correlated with group-based medical mistrust demonstrating an opportunity for engagement. Group-based medical mistrust is associated with Black patients’ care expectations when seeking addiction treatment. Use of the GBMMS within addiction medicine to address themes of mistrust in patients, and potential biases in providers, may improve treatment access and outcomes.