Community-Based Participatory Research

Community-based participatory research (CBPR) utilizes a partnership approach, bringing together researchers and community stakeholders as equal partners throughout the research process to contribute expertise and share in decision making.

CBPR lets power be shared between researcher and the researched, acknowledges legitimacy of experiential knowledge, and focuses on improving practices. CBPR has been identified by the National Institutes of Health as a successful approach in creating interventions and prevention strategies to reduce health disparities.

In 2021, LUNGevity launched its first CBPR program, the Health Equity for Communities Research Award.

Research Funded to Date

2021

Health Equity for Communities Research Award

Kristen E. Riley, PhD

Rutgers, the State University of New Jersey, New Brunswick, NJ

CBPR intervention to decrease lung cancer stigma and health disparities

The use of mindfulness has the potential to address the multiple intersections of stigma in high-risk lung cancer groups inclusive of racial/ethnic and LGBTQ+ communities. A known approach of mindfulness (MOST) that has proven utility in other cancer-related fields has not been examined to a great extent in reducing stigma from lung cancer.

Dr. Riley is testing an innovative community-based participatory research (CBPR) and Multiphase Optimization Strategy (MOST) method to develop a brief virtual mindfulness intervention to decrease intersectional stigma. Dr. Riley will examine the reach, acceptability, and feasibility to underserved intersectional groups, including Black, Latinx, and LGBTQ+ lung cancer patients. This research project has a high likelihood of improving health behaviors and health outcomes for several communities.

Research Summary

Stigma, or feelings of guilt and shame about having lung cancer, including feeling blamed for causing one’s illness, is very common, with 95% of lung cancer patients reporting lung cancer stigma. This has been shown to lead people with lung cancer, a growing, in-need, and underserved group, to not reach out for appropriate screening, hide their diagnosis, not disclose their smoking status, not engage with smoking cessation services if needed, and not follow through on treatment recommendations.

Adding existing and intersectional stigma experienced because of race, ethnicity, and sexual and gender minority status in addition to lung cancer stigma exacerbates these issues at each key stage of interaction with our healthcare system across the care continuum. Disparities in survival rates by race, ethnicity, sexual orientation, and income are stark, and are largely created by stigma. Of course, lack of follow-through on screening and treatment recommendations, including smoking cessation, decreases treatment effectiveness and increases the likelihood of treatment complications, recurrences, and secondary cancers. Lung cancer stigma and intersectional stigma related to minoritized group status therefore leads to increased morbidity and mortality, and health disparities, compromising the five-year survival rate.

Luckily, in addition to multilevel research including healthcare provider training and systems change, which is key and can be slow, mindfulness interventions have been shown to decrease stigma and the negative impacts of stigma, and are easy to use, especially for underserved groups with low treatment access. They are thus extremely promising for driving health equity in lung cancer care across the care continuum by increasing engagement with and follow through on treatment recommendations at each stage of the cancer continuum. However, these interventions have never been tested to decrease lung cancer stigma.

In this study, using an innovative design, we aim to test and identify the key components of a brief, easily disseminable, online mindfulness intervention. We will examine the reach, acceptability, and feasibility to underserved intersectional groups that might face even more stigma, and experience extreme health disparities, including Black, Latinx, LGBTQ+ individuals, and low SES groups. We aim to increase the five-year survival rate of cancer in these groups.

Technical Abstract

Lung cancer patients and survivors are a growing underserved group, with the lowest quality of life of any cancer survivor group. Lung cancer is also the deadliest form of cancer, with the five year survival rate being 18.6%; survival rates are even lower for intersectional underserved groups. Stigma about having lung cancer, or a feeling of blame and shame for having lung cancer, having caused lung cancer through historical or current smoking, or having others assume one caused their own lung cancer, leads to higher rates of depressive symptoms, lower disclosure of smoking, lower likelihood of engaging with smoking cessation services, and decreased likelihood of following through on treatment recommendations. Thus, lung cancer stigma likely significantly contributes to a lower five-year survival rate for cancer. Importantly, stigmatized intersectional groups experience stark health disparities, with Latinx and Black lung cancer survivors reporting lower quality of life, with Black and LGBTQ lung cancer survivors reporting higher rates of smoking, and with all three groups reporting low access to care and righteous medical mistrust. We have no current interventions to treat this intersectional stigma across the cancer continuum. Promisingly, mindfulness interventions have been shown to decrease stigma in other health contexts and are easily disseminable. In this study, we propose an innovative Multiphase Optimization Strategy (MOST) methodology to build and optimize a brief virtual mindfulness intervention to decrease lung cancer stigma. We will measure behavioral outcomes, too, such as likelihood of accepting a referral to smoking cessation services, in order to detect an effect on the five-year survival rate of lung cancer. We will examine the reach, acceptability, and preliminary efficacy of this intervention in these underserved groups in order to decrease health disparities and extend the five-year survival rate.

Matthew Triplette, MD, MPH

University of Washington/Fred Hutchinson Cancer Research Center, Seattle, WA

Tailoring Screening and Smoking Cessation for the LGBTQ community

The lesbian, gay, bisexual, trans, and queer (LGBTQ) community faces several health disparities, including a higher rate of lung cancer due to increased rates of tobacco use in this group. Dr. Triplette will partner with an urban LGBTQ community center to create and evaluate a tailored lung cancer screening and smoking cessation navigation program to specifically address the needs of this community. By directly partnering with stakeholders and community members, he plans to develop a sustainable program that will assist LGBTQ community members with both screening and cessation that can then be disseminated to improve the health of LGBTQ patients across the country.

Research Summary

Lung cancer continues to be the leading cause of cancer death in the United States. Prevention of lung cancer through smoking cessation, and early detection of lung cancer in high-risk patients through CT-based lung cancer screening, are our most important tools to reduce the impact of this deadly disease. The lesbian, gay, bisexual, trans and queer (LGBTQ) community face several health disparities, including a higher rate of lung cancer due to increased rates of tobacco use in this group. In this study, we propose to partner with an urban LGBTQ community center to create and evaluate a tailored lung cancer screening and smoking cessation navigation program to specifically address the needs of this community. By directly partnering with stakeholders and community members, we plan to develop a sustainable program that will assist LGBTQ community members with both screening and cessation which can then be disseminated to improve the health of LGBTQ patients across the country.

Technical Abstract

Lung cancer is the leading cause of cancer death in the United States, and disproportionate risk is faced in the lesbian, gay, bisexual, trans and queer (LGBTQ) community due to higher smoker rates. Lung cancer screening (LCS) with annual low-dose chest CT has been demonstrated to reduce lung cancer mortality by up to 20% in a subset of high-risk smokers, a benefit that is doubled with sustained smoking cessation. Little is known about LCS in LGBTQ patients; however, in general, this population faces healthcare discrimination and other unique barriers to preventive care. This study will bridge this significant knowledge gap through partnership with an urban LGBTQ community center to tailor and evaluate a smoking cessation and LCS program for the LGBTQ community through a robust mixed-methods approach centered in community-based participatory research. In Aims 1 and 2, we will use a qualitative approach to engage the community and build a tailored cessation and screening navigation program, and in Aim 3 we will pilot the program in single-arm study, evaluating both effectiveness and the implementation outcomes of the program. Results from this study will assist with the development of a sustainable local LGBTQ LCS and smoking cessation program and will be used to inform a larger multicenter trial of the intervention.

Community-Based Participatory Research

Research Funded to Date

Health Equity for Communities Research Award

LUNGevity Foundation

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