Factors leading to disparity in lung cancer diagnosis among black/African American communities in the USA: a qualitative study.

OBJECTIVE: This study has two objectives: first, to explore the diagnostic experiences of black/African American (BAA) patients with lung cancer to pinpoint pitfalls, suboptimal experiences and instances of discrimination leading to disparities in outcomes compared with patients of other ethnic backgrounds, especially white patients. The second objective is to identify the underlying causes contributing to health disparities in the diagnosis of lung cancer among BAA patients. METHODS: We employed a phenomenological research approach, guiding in-depth interviews with patients self-identifying as BAA diagnosed with lung cancer, as well as caregivers, healthcare professionals and community advocates knowledgeable about BAA experiences with lung cancer. We performed thematic analysis to identify experiences at patient, primary care and specialist levels. Contributing factors were identified using the National Institute of Minority Health and Health Disparities (NIMHD) health disparity model. RESULTS: From March to November 2021, we conducted individual interviews with 19 participants, including 9 patients/caregivers and 10 providers/advocates. Participants reported recurring and increased pain before seeking treatment, treatment for non-cancer illnesses, delays in diagnostic tests and referrals, poor communication and bias when dealing with specialists and primary care providers. Factors contributing to suboptimal experiences included reluctance by insurers to cover costs, provider unwillingness to conduct comprehensive testing, provider bias in recommending treatment, high healthcare costs, and lack of healthcare facilities and qualified staff to provide necessary support. However, some participants reported positive experiences due to their insurance, availability of services and having an empowered support structure. CONCLUSIONS: BAA patients and caregivers encountered suboptimal experiences during their care. The NIMHD model is a useful framework to organise factors contributing to these experiences that may be leading to health disparities. Additional research is needed to fully capture the extent of these experiences and identify ways to improve BAA patient experiences in the lung cancer diagnosis pathway.

A qualitative study of interactions with oncologists among patients with advanced lung cancer.

INTRODUCTION: To support the care of lung cancer patients, oncologists have needed to stay current on treatment advancements and build relationships with a new group of survivors in an era where lung cancer survivorship has been re-defined. The objectives of the study were to (1) understand the perspectives of advanced lung cancer patients whose tumors have oncogenic alterations about their care experiences with their oncologist(s) and (2) describe the perceptions of advanced lung cancer patients about seeking second opinions and navigating care decisions. METHODS: In this qualitative study, patients with advanced lung cancer (n = 25) on targeted therapies were interviewed to discuss their ongoing experience with their oncologists. We used deductive and inductive qualitative approaches in the coding of the data. We organized the data using the self-determination framework. RESULTS: Patients described both positive and negative aspects of their care as related to autonomy, provider competency, and connectedness. Patients sought second opinions for three primary reasons: expertise, authoritative advice, and access to clinical trial opportunities. When there is disagreement in the treatment plan between the primary oncologist and the specialist, there can be confusion and tension, and patients have to make difficult choices about their path forward. CONCLUSIONS: Patients value interactions that support their autonomy, demonstrate the competency of their providers, and foster connectedness. To ensure that patients receive quality and goal-concordant care, developing decision aids and education materials that help patients negotiate recommendations from two providers is an area that deserves further attention.

Using Electronic Data Collection Platforms to Assess Complementary and Integrative Health Patient-Reported Outcomes: Feasibility Project.

BACKGROUND: The Veteran Administration (VA) Office of Patient-Centered Care and Cultural Transformation is invested in improving veteran health through a whole-person approach while taking advantage of the electronic resources suite available through the VA. Currently, there is no standardized process to collect and integrate electronic patient-reported outcomes (ePROs) of complementary and integrative health (CIH) into clinical care using a web-based survey platform. This quality improvement project enrolled veterans attending CIH appointments within a VA facility and used web-based technologies to collect ePROs. OBJECTIVE: This study aimed to (1) determine a practical process for collecting ePROs using patient email services and a web-based survey platform and (2) conduct analyses of survey data using repeated measures to estimate the effects of CIH on patient outcomes. METHODS: In total, 100 veterans from one VA facility, comprising 11 cohorts, agreed to participate. The VA patient email services (Secure Messaging) were used to manually send links to a 16-item web-based survey stored on a secure web-based survey storage platform (Qualtrics). Each survey included questions about patient outcomes from CIH programs. Each cohort was sent survey links via Secure Messaging (SM) at 6 time points: weeks 1 through 4, week 8, and week 12. Process evaluation interviews were conducted with five primary care providers to assess barriers and facilitators to using the patient-reported outcome survey in usual care. RESULTS: This quality improvement project demonstrated the usability of SM and Qualtrics for ePRO collection. However, SM for ePROs was labor intensive for providers. Descriptive statistics on health competence (2-item Perceived Health Competence Scale), physical and mental health (Patient-Reported Outcomes Measurement Information System Global-10), and stress (4-item Perceived Stress Scale) indicated that scores did not significantly change over time. Survey response rates varied (18/100, 18.0%-42/100, 42.0%) across each of the 12 weekly survey periods. In total, 74 of 100 participants provided ≥1 survey, and 90% (66/74) were female. The majority, 62% (33/53) of participants, who reported the use of any CIH modality, reported the use of two or more unique modalities. Primary care providers highlighted specific challenges with SM and offered solutions regarding staff involvement in survey implementation. CONCLUSIONS: This quality improvement project informs our understanding of the processes currently available for using SM and web-based data platforms to collect ePROs. The study results indicate that although it is possible to use SM and web-based survey platforms for ePROs, automating scheduled administration will be necessary to reduce provider burden. The lack of significant change in ePROs may be due to standard measures taking a biomedical approach to wellness. Future work should focus on identifying ideal ePRO processes that would include standardized, whole-person measures of wellness.

A Mobile and Web-Based Self-Directed Complementary and Integrative Health Program for Veterans and Their Partners (Mission Reconnect): Protocol for a Mixed-Methods Randomized Controlled Trial.

BACKGROUND: Complementary and integrative health (CIH) is a viable solution to PTSD and chronic pain. Many veterans believe CIH can be performed only by licensed professionals in a health care setting. Health information technology can bring effective CIH to veterans and their partners. OBJECTIVE: This paper describes the rationale, design, and methods of the Mission Reconnect protocol to deliver mobile and Web-based complementary and integrative health programs to veterans and their partners (eg, spouse, significant other, caregiver, or family member). METHODS: This three-site, 4-year mixed-methods randomized controlled trial uses a wait-list control to determine the effects of mobile and Web-based CIH programs for veterans and their partners, or dyads. The study will use two arms (ie, treatment intervention arm and wait-list control arm) in a clinical sample of veterans with comorbid pain and posttraumatic stress disorder, and their partners. The study will evaluate the effectiveness and perceived value of the Mission Reconnect program in relation to physical and psychological symptoms, global health, and social outcomes. RESULTS: Funding for the study began in November 2018, and we are currently in the process of recruitment screening and data randomization for the study. Primary data collection will begin in May 2019 and continue through May 2021. Projected participants per site will be 76 partners/dyads, for a total of 456 study participants. Anticipated study results will be published in November 2022. CONCLUSIONS: This work highlights innovative delivery of CIH to veterans and their partners for treatment of posttraumatic stress disorder and chronic pain. TRIAL REGISTRATION: ClinicalTrials.gov NCT03593772; https://clinicaltrials.gov/ct2/show/NCT03593772 (Archived by WebCite at http://www.webcitation.org/77Q2giwtw). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/13666.

Photonovels: an innovative approach to address health disparities and sustainability.

Medically underserved and underrepresented communities have high rates of health disparities. In the greater Tampa Bay area, communities of color are disproportionately affected by chronic diseases such as cancer. In response to these concerns and as part of a lay health advisory program being implemented by the Center for Equal Health, a University of South Florida/H. Lee Moffitt Cancer Center & Research Institute partnership, our group created a photonovel, an educational tool which explains topics using a graphic novel style. The photonovel was designed to educate community members about prostate cancer and was compared to standard cancer educational materials currently used for cancer outreach. We found that our photonovel served as an effective health education tool to address cancer health disparities in medically underserved and underrepresented populations in Tampa Bay.

Designing a community-based lay health advisor training curriculum to address cancer health disparities.

INTRODUCTION: Racial and ethnic minorities have disproportionately higher cancer incidence and mortality than their White counterparts. In response to this inequity in cancer prevention and care, community-based lay health advisors (LHAs) may be suited to deliver effective, culturally relevant, quality cancer education, prevention/screening, and early detection services for underserved populations. APPROACH AND STRATEGIES: Consistent with key tenets of community-based participatory research (CBPR), this project engaged community partners to develop and implement a unique LHA training curriculum to address cancer health disparities among medically underserved communities in a tricounty area. Seven phases of curriculum development went into designing a final seven-module LHA curriculum. In keeping with principles of CBPR and community engagement, academic-community partners and LHAs themselves were involved at all phases to ensure the needs of academic and community partners were mutually addressed in development and implementation of the LHA program. DISCUSSION AND CONCLUSIONS: Community-based LHA programs for outreach, education, and promotion of cancer screening and early detection, are ideal for addressing cancer health disparities in access and quality care. When community-based LHAs are appropriately recruited, trained, and located in communities, they provide unique opportunities to link, bridge, and facilitate quality cancer education, services, and research.