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

Our plain-English summary of The Lived Experience of Persons With Malignant Pleural Mesothelioma in the United States, by S.L. Walker, J.D. Crist, K. Shea, et al (Cancer Nursing, 2021).

The study

• Authors: S.L. Walker, J.D. Crist, K. Shea, S. Holland, P.Z. Cacchione
• Journal: Cancer Nursing
• Published: 2021;44(2):E90-E98
• Cited by: 14 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

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.

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.

In plain English

This study described what living with malignant pleural mesothelioma (MPM) is like in the United States and looked for unmet patient needs. Using a qualitative interview method called descriptive phenomenology, the authors interviewed seven people with MPM (4 men and 3 women, mean age 72) at a large northeastern US university medical center between August 2017 and October 2017. Time since diagnosis ranged from 3 months to 7 years. Asbestos exposure was not examined. Three themes emerged: uncertainty and worry about the future, adapting to a new norm, and value in relationships. Shortness of breath and pain were the most commonly reported symptoms, and hope and optimism often existed alongside worry. Communication problems were felt to be worst around the time of diagnosis. Unmet needs included peer support, a point of contact on the care team, services that removed travel barriers, and more MPM research. The authors concluded that their findings reflected other MPM studies but also included unique findings. They noted that the study took place at one institution and that no participant was terminally ill.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Qualitative descriptive phenomenology study using semi-structured individual interviews (one interview of up to 60 minutes per participant)
• Who was studied: 7 adults with malignant pleural mesothelioma (4 men, 3 women; mean age 72 years, range 58 to 79), recruited from a large northeastern US university medical center with a dedicated MPM program, interviewed August 2017 to October 2017; time from diagnosis 3 months to 7 years. Subtypes: epithelioid 4, biphasic 2, sarcomatoid 1.
• Exposure: Not studied. The article did not assess asbestos or any other exposure. It studied the experience of living with MPM. Treatments participants had received: chemotherapy 6, surgery 5, immunotherapy 3, radiation 3; some had more than one.
• Main results:
  • Three themes emerged from the interviews of the 7 participants: uncertainty/worry about the future, adapting to a new norm, and value in relationships
  • Participants worried about how the disease and treatment would unfold, but feelings of hope and optimism often existed alongside that worry
  • Shortness of breath and pain were the symptoms participants reported most commonly
  • Participants universally reported developing new strategies to adapt to loss of physical functioning
  • Relationships with healthcare providers became central for participants
  • Inadequate communication from the healthcare team was felt to be most problematic around the time of diagnosis
  • Support from other people with MPM was seen as offering potential benefits, but participants also identified risks, such as comparing notes with peers who had poor outcomes
  • Unmet need: participants wanted peer support, particularly at the time of diagnosis
  • Unmet need: participants supported having a point of contact on the care team to help with communication and care coordination
  • Unmet need: participants felt services that remove geographic barriers (for example, local affordable lodging) should be a priority, because MPM care often requires significant travel
  • Unmet need: more research on MPM
• The authors' conclusion: The authors concluded that their findings reflected those of MPM experience studies in other countries but also uncovered unique findings, including hope and optimism and the central role of the patient-healthcare provider relationship. They stated that supportive care should have a key role in caring for people with MPM.
• Limitations the authors state:
  • The study was conducted at a single institution with an established interprofessional MPM program
  • None of the participants were terminally ill (life expectancy of 6 months or less), so findings may not transfer to other samples and settings
  • Only one interview per participant was possible, because of geographic constraints and a high symptom burden

Topics

The National Library of Medicine indexes this study under subjects our site covers: Mesothelioma.

Medical terms in this study, explained in our Lexicon: Pleural Mesothelioma.

Related studies

• Mortality experience of insulation workers in the United States and Canada, 1943--1976 — I.J. Selikoff, E.C. Hammond, et al. (1979)
• Risk of cancer from occupational exposure to ionising radiation: retrospective cohort study of workers in France, the United Kingdom, and the United States (INWORKS) — D.B. Richardson, E. Cardis, et al. (2015)
• Time trend of mesothelioma incidence in the United States and projection of future cases: an update based on SEER data for 1973 through 2005 — B. Price, A. Ware (2009)
• Projection of asbestos related diseases in the United States, 1985-2009. I. Cancer — D.E. Lilienfeld, J.S. Mandel, et al. (1988)
• The lived experience of patients with pleural mesothelioma — N. Hughes, A. Arber (2008)
• Experiences of a state-sponsored notification and screening program for asbestos workers — A.P. Bender, A.N. Williams, et al. (1993)

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