Patients with malignant pleural mesothelioma (MPM) may need different psychological care than patients with advanced lung cancer, according to a recent study published in the European Journal of Oncology Nursing.
The study, “A Systematic Literature Review Comparing The Psychological Care Needs Of Patients With Mesothelioma And Advanced Lung Cancer,” shows that although both patient populations have similar factors causing psychological distress, each disease has unique factors associated with psychological symptoms.
MPM is a rare and severe form of cancer affecting an increasing number of people and is associated with poor outcomes. Beyond the clinical manifestations of MPM, patients frequently experience high levels of stress, including anxiety, depression, anger, fear, isolation, and hopelessness.
Historically, psychological stress in mesothelioma patients has been treated using the existing infrastructure for lung cancer, assuming both populations have similar care needs. But healthcare professionals and advocacy groups have been arguing in favor of distinct services for mesothelioma patients, recognizing that their needs might be different from those of lung cancer patients.
“Given the palliative nature of treatment for pleural mesothelioma and the inherent need to optimize quality of life for individuals with the disease, an understanding of the factors that may impact on psychological well-being and the introduction of appropriate interventions to ameliorate them are crucial,” the researchers wrote.
To understand whether the psychological needs of mesothelioma patients are different from patients living with advanced lung cancer, researchers reviewed 17 studies addressing this matter. They found that, across the studies, 10 key concepts were particularly relevant among patients (see below). Researchers then compared the similarities and differences between MPM and lung cancer patients.
- Uncertainty: This is related to prognosis and concerns about how the disease will progress. Patients reported they did not know what to expect from the future or where they would be a few months from that point.
- Normality: Refers to the idea of living normally or maintaining normality. Threats to “normality” can be perceived by patients as something to avoid. “We’ve got to live a normal life because if we don’t it’s going to be horrendous,“ one patient said in one of the studies.
- Hope/hopelessness: This may be a factor that causes significantly more psychological distress in MPM patients than in lung cancer patients. Although both diseases have similarly poor prognoses, lung cancer patients believe they have more treatment options, which promotes feelings of hope and a sense of control.
- Stigma/blame/guilt: Some MPM patients reported feelings of anger and betrayal toward former employers for having exposed them to asbestos (a triggering factor for mesothelioma). One MPM study referred to stigmatization associated with the apprehension of other people toward cancer. Lung cancer patients reported feelings of stigmatization due to their disease’s association with smoking.
- Family/career concern: Patients from both diseases expressed concern about their family members or caregivers. “I worry for the family, more than their feelings, more than my own,” one patient said in a study.
- Physical symptoms: Patients also reported physical symptoms as a form of distress due to the impact on patients’ social roles, independence, their intensity and progression, and their significance as a sign of imminent death.
- Experience of diagnosis: Delays in diagnosis, timing, and perceived negative messages from doctors while communicating diagnosis were also reported as distressful factors for both lung cancer and MPM patients.
- Iatrogenic distress: This factor is related to the distress caused by contact with the healthcare system. MPM patients reported poor communication regarding responsibility for care and treatment decisions, fragmented and uncoordinated care, and a lack of supportive care provision. Lung cancer patients complained about poor communication skills and attitudes from healthcare professionals.
- Financial/legal: This factor was particularly distressful among MPM patients. Filling out forms, meeting with lawyers, and taking care of paperwork for compensation claims were often seen as a burden for these patients. But for some patients, all this work provided a sense of financial security for their family.
- Death and dying: This refers to patients’ fears about death, such as how and when they will die and the need to ensure everything is taken care of to ease the burden on their families when they pass away. Both populations reported distress related to this factor.
“A clear finding from the review is that the experience of psychological distress in individuals with mesothelioma and lung cancer are complex and multifaceted,” the researchers wrote. “There are similarities between the two populations in terms of factors that may cause psychological distress. However, there are other factors that seem particularly distinct for individuals affected by mesothelioma.”
“It is imperative, therefore, that separate assessment and care pathways are developed to address some of the specific experiences that may lead to psychological distress for people living with mesothelioma,” they concluded.