The Lived Experience of Persons With Malignant Pleural Mesothelioma in the United States.

Background: Malignant pleural mesothelioma (MPM) is a rare but deadly cancer. Although there is an emerging picture of the individual MPM experience, the United States is underrepresented in this literature. With the United States contributing more deaths from MPM than any other country, findings from this study will enhance a global body of literature on the lived experience of this devastating cancer.

Objective: The aims of this descriptive phenomenological research study were to explore the lived experience of MPM in the United States and identify unmet patient needs.

Interventions/methods: This was a descriptive phenomenology study employing semi-structured individual interviews with persons with MPM.

Results: A total of 7 persons with MPM from a large northeastern US medical center participated. Three major themes about the MPM lived experience emerged: (1) uncertainty/worry about the future, (2) value in relationships, and (3) adapting to a new norm.

Conclusions: Findings from this study are consistent with other MPM research, noting a high symptom burden, lifestyle changes, and feelings of uncertainty about the future. However, participants also expressed feelings of hope and optimism. Particularly salient to the MPM experience was the role of communication with the healthcare team as well as other persons with MPM.

Implications For Practice: Timely, coordinated, and personalized care as well as skilled communication should be the cornerstone of care for persons with MPM. Supportive care strategies that address uncertainty, the high symptom burden, feelings of isolation, and existential concerns are also integral to quality care.