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.
Keywords: Adult oncology; Public health; Respiratory tract tumours.
© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.