Introduction
Malignant pleural mesothelioma (MPM) is a progressive, debilitating, and almost universally fatal disease usually caused by asbestos inhalation occurring typically more than 30 years before diagnosis (Delgermaa et al. Reference Delgermaa, Takahashi and Park2011; Guglielmucci et al. Reference Guglielmucci, Bonafede and Franzoi2018; Hajok et al. Reference Hajok, Marchwińska and Dziubanek2014; Kuschner et al. Reference Kuschner, Varma and Flores2012; Moore and Darlison Reference Moore and Darlison2011). Asbestos has an extremely long industrial lifespan, and there are repeated opportunities for contamination during production, maintenance, and abatement (Park et al. Reference Park, Takahashi and Hoshuyama2011). Available information regarding prevalence is biased toward developed regions that have known historical uses of asbestos and the resources to diagnose asbestos-related diseases (Park et al. Reference Park, Takahashi and Hoshuyama2011). Estimates suggest that as many as 43,000 patients die of mesothelioma each year worldwide (Driscoll et al. Reference Driscoll, Nelson and Steenland2005). However, it is also estimated that one unreported mesothelioma case exists for every 4 to 5 reported cases (Park et al. Reference Park, Takahashi and Hoshuyama2011). The incidence of mesothelioma was expected to peak between 2010 and 2015 (Arber and Spencer Reference Arber and Spencer2013); however, the enduring presence of asbestos within the built environment is likely to result in continuing cases of mesothelioma for decades to come (Brims et al. Reference Brims, Meniawy and Duffus2016).
The long latency period of MPM results in peak incidence during late middle age, with the average age of diagnosis at age 72 (American Cancer Society 2019; Arber and Spencer Reference Arber and Spencer2013). Prognosis remains poor despite multimodal interventions with heavy treatment burden in which quality of life (QOL) may be sacrificed for short-term survival gains. Most treatments involve chemotherapy, radiation, and/or surgery (National Comprehensive Cancer Network 2016). Median survival for patients with this disease is less than 1 year (Brims et al. Reference Brims, Meniawy and Duffus2016), with most patients dying within 18 months of diagnosis (Moore et al. Reference Moore, Darlison and Tod2010). Patients often experience pronounced, intractable physical symptoms, particularly pain and breathlessness, persistent cough, decreased appetite and weight loss, fatigue, sleep disturbance, and sweating (Arber and Spencer Reference Arber and Spencer2013; Chapman et al. Reference Chapman, Hughes and Landy2005; Mollberg et al. Reference Mollberg, Vigneswaran and Kindler2012). Psychosocial distress is a serious issue for patients with MPM (Arber and Spencer Reference Arber and Spencer2013). Psychological distress can be more pronounced than physical distress for some patients (Ribi et al. Reference Ribi, Bernhard and Schuller2008). As the disease advances, patients may feel a loss of control over their lives, disease, and treatment as well as a loss of self-esteem (Arber and Spencer Reference Arber and Spencer2013). Complicated medicolegal and financial concerns contribute to a reduced QOL in some patients (Arber and Spencer Reference Arber and Spencer2013).
Considering that an occupational exposure potentially caused the disease often leads to resentment directed toward the responsible organization (Kozlowski et al. Reference Kozlowski, Campbell and Tucker2014). Stress and effort involved in seeking compensation can be a further complicating factor for mesothelioma patients (Kozlowski et al. Reference Kozlowski, Campbell and Tucker2014). However, the compensation is helpful to many families since those exposed are often industrial workers. An awareness of the occupational origin of the disease and potential human responsibility involved in the exposure can worsen patients’ conditions (Di Cesare et al. Reference Di Cesare, Crivellari and Gallizzi2016) and patients may be confronted with depressive symptoms, fears, anxieties, guilt, shame, and rage for an “unfair” diagnosis (Guglielmucci et al. Reference Guglielmucci, Bonafede and Franzoi2018). Denial is a predominant coping strategy early on among mesothelioma patients once informed of the increased risk of the disease after asbestos exposure (Guglielmucci et al. Reference Guglielmucci, Bonafede and Franzoi2018; Lebovits et al. Reference Lebovits, Chahinian and Gorzynski1981, Reference Lebovits, Chahinian and Holland1983). One study of mesothelioma patients found that 65% of patients who had direct or indirect asbestos exposure denied any anger toward the asbestos industry. Several patients even expressed gratitude toward the industry for providing them with a good job even after being informed about the link between asbestos exposure and mesothelioma (Lebovits et al. Reference Lebovits, Chahinian and Holland1983). After receiving information about this link regarding exposure, the patients flatly denied its relevance to them (Lebovits et al. Reference Lebovits, Chahinian and Holland1983).
The most common symptoms reported by patients with MPM are shortness of breath (37%), tiredness (32%), general pain (29%), worry (22%), chest pain (21%), cough (20%), sweating (20%), and constipation (19%) (Muers et al. Reference Muers, Stephens and Fisher2008). Despite the heavy symptom burden and poor prognosis, there has been little psychosocial research on mesothelioma and little is known about the QOL after diagnosis (Moore et al. Reference Moore, Darlison and Tod2010). The available evidence suggests that patients feel isolated, poorly informed about treatment options, and highly distressed by the illness and its cause (Moore et al. Reference Moore, Darlison and Tod2010). Individuals with mesothelioma experience psychosocial distress from the first months of receiving the diagnosis (Arber and Spencer Reference Arber and Spencer2013; Kozlowski et al. Reference Kozlowski, Campbell and Tucker2014). Few studies examine how patients cope with an MPM diagnosis, what special problems exist for MPM patients, their QOL, and specific psychosocial needs. A recent scoping review revealed only 17 studies that focused on psychological functioning in patients with MPM (Sherborne et al. Reference Sherborne, Seymour and Taylor2020). The reviewers identified 3 major themes based on these studies including “The Passing of Time,” “Dealing with Difficult Feelings,” and “Craving Good Communication.” They concluded that additional research is needed to understand the nuances of the MPM patient experience. Thus, there is a need to understand the primary psychosocial concerns for patients with MPM so that mental health interventions can be appropriately tailored to their needs.
This study sought to identify the prevalence of MPM patient-reported symptoms and coping strategies with a battery of self-report measures of QOL, depression, and social support. A secondary aim was to assess MPM patient needs for assistance in managing the disease. Relationships between depression and coping strategies were explored in order to identify opportunities for future targeted intervention. This research builds a foundation for developing a more in-depth intervention to identify topics important to this population and to provide support to patients with mesothelioma.
Method
Participants and procedure
This cross-sectional study was approved by the Memorial Sloan Kettering Cancer Center (MSK) Institutional Review Board/Privacy Board (IRB#11-066). Patients with MPM were screened and recruited at MSK between 2011 and 2013. To be eligible for participation, patients had to be 18 years or older, fluent in English, receiving care at MSK, and have a diagnosis of MPM. Potential participants were identified by research personnel and then approved for approach by the patient’s treating physician. Participants were recruited from the Thoracic Oncology, Radiation Oncology, and Surgery services at any phase of illness. Research personnel approached eligible patients in the outpatient clinic and/or contacted them by mail. Eligible patients were informed of study procedures, risks, and benefits and offered participation. In total, 79 of 94 eligible patients agreed and provided informed consent to participate in the study; 69 patients completed the questionnaires. Ten patients dropped prior to completion of questionnaire due to anxiety associated with the disease (n = 4), feeling too ill to complete the questionnaire (n = 3), death (n = 2), and passive refuser (n = 1).
Participants completed a questionnaire-based assessment of coping strategies, social support, depression, and overall QOL during a single time point. Medical information was accessed and recorded through the medical records system. All study data were collected by trained research personnel.
Measures and data analysis
Medical and demographic information
Participants self-reported key demographic variables as well as medical history such as disease stage and treatment.
Quality of life
The Functional Assessment of Cancer Therapy – Lung (FACT-L; Cella et al. Reference Cella, Bonomi and Lloyd1995) is a measure of QOL with physical, emotional, social, and functional subscales and an additional concerns subscale constructed with lung cancer–specific questions. Total scores range from 0 to 144, with higher scores indicating better functioning.
Depression
The Zung Self-Rating Depression Scale (Zung Reference Zung1965) measured depressive symptoms as reported by the participant. For this analysis, participants’ scores were categorized into 2 levels: depressed (50–80) and not depressed (20–49). Scores indicate levels of depressive symptoms that may be of clinical significance.
Coping
Participants were asked to complete the Coping Orientation to Problems Experienced Inventory (Brief COPE) (Carver Reference Carver1997), which measured self-distraction, active coping, denial, substance use, use of emotional support, use of instrumental support, behavioral disengagement, venting, positive reframing, planning, humor, acceptance, religion, and self-blame. Each of the 14 subscales consist of 2 items, with subscale scores ranging from 2 to 8.
Social support
The Social Support Questionnaire – Short Form (Sarason et al. Reference Sarason, Sarason and Shearin1987) measured perceived emotional support and conceptualized social support into 2 basic elements: the number of individuals perceived as available (quantity of support) and overall satisfaction with it.
Data analysis
Patient characteristics are described both overall and by Zung depression status. Categorical variables (e.g., gender and cancer treatment indicators) are compared between depressed and not depressed participants using Chi-square test. Continuous measures (e.g., COPE and FACT-L) are compared using independent samples t-tests, with Cohen’s d for effect sizes also reported. We used pairwise deletion, so that if a single variable (e.g., education) was missing for a participant, that participant was only excluded from analyses including the missing variable. This strategy maximizes the analytic sample size by utilizing all available data. Analyses were conducted in SAS version 9.4.
Results
Participants were predominately male (70%; n = 47) and ranged in age from 35 to 83 years old (M = 65.61, SD = 9.71; see Table 1). Most participants were white (88%; n = 59), and 10% (n = 7) identified as Hispanic. The majority were married or living with a partner (93%; n = 62) and had some college or more education (64%; n = 43). Forty-two percent of participants (n = 28) were retired, while 25% (n = 17) reported current employment. Nearly one-third of participants described their disease as locally advanced (22%, n = 15) or metastatic (10%, n = 7). The majority of participants were undergoing chemotherapy treatment at the time of study participation (67%; n = 45). Fourteen percent of participants (n = 11) endorsed significantly elevated depression symptoms. No significant demographic or clinical differences in depressed compared to nondepressed participants were observed, with a trend toward those identifying as Hispanic and those who were divorced as being more likely to be depressed (Table 1).
Participant characteristics overall and by depression criteria
Note: All percents represent valid percents.
For the total sample, the most frequently endorsed coping strategies were active coping, emotional support, and acceptance (Table 2). Potentially harmful coping strategies such as substance use, disengagement, and self-blame were the least frequently reported. Participants reported uniformly satisfactory QOL across domains on the FACT-L, with the highest ratings for social and family well-being (M = 23.12, SD = 3.97). When examining differences between depressed and nondepressed participants, the majority of subscales on the COPE and FACT-L were not significantly different between groups. However, there were significant differences with small to large effects on the positive reframing (M = 3.32, SD = 0.75 vs. M = 2.35, SD = 0.79, d = 1.24), humor (M = 2.36, SD = 1.00 vs. M = 1.63, SD = 0.73, d = 0.95), and acceptance subscales (M = 3.77, SD = 0.47 vs. M = 3.27, SD = 0.71, d = 0.75), such that those in the depressed subgroup reported more frequent use of these strategies.
Patient-reported symptoms and coping mechanisms
Note: p-Values for continuous variables are based on independent samples t-test. FACT-L = Functional Assessment of Cancer Therapy – Lung; SSQ = Social Support Questionnaire, Short Form.
Discussion
The present study did not identify any clear correlates of depression or QOL among patients with MPM. However, trends suggested that Hispanic and divorced participants were potentially more likely to be depressed than others. These findings are consistent with past psycho-oncology research, which found that Hispanic individuals with cancer endorsed significantly worse depression and QOL than Whites (Luckett et al. Reference Luckett, Goldstein and Butow2011). Thus, these observations suggest that when evaluating and identifying patients with MPM who may be at increased risk for distress during their cancer treatment, clinicians should be sensitive to ethnicity and marital status. Future psychosocial intervention development should also include ethnically diverse stakeholders to ensure that interventions are culturally sensitive. Similarly, as marital status has previously been utilized as an indicator of overall social support (DiMatteo Reference DiMatteo2004), MPM patients may benefit from interventions that increase social connectedness, either to peers or other individuals (e.g., group psychotherapy and peer support programs).
Contrary to expectations, the use of positive reframing and acceptance coping strategies were higher among those who were depressed, with no difference between depressive subgroups on any other coping subscales. Each of these coping strategies can be particularly helpful for those coping with an advanced cancer diagnosis and are often the target of evidence-based psychotherapy interventions in oncology (Antoni et al. Reference Antoni, Lechner and Diaz2009; Breitbart et al. Reference Breitbart, Pessin and Rosenfeld2018; González-Fernández and Fernández-Rodríguez Reference González-Fernández and Fernández-Rodríguez2019). It is possible that depressed participants experience depressive realism (Keller et al. Reference Keller, Lipkus and Rimer2002) in which they find greater acceptance of their disease/prognosis relative to nondepressed patients, who may be less prognostically aware (Saracino et al. Reference Saracino, Polacek and Applebaum2021). Similarly, they may engage in more positive reframing with a greater awareness of the severity of their disease. Conclusions about this potential relationship cannot be drawn based on the current data, but future inquiry should evaluate this possibility more systematically.
The use of humor as a coping strategy was also more prevalent in the depressed subsample. The use of humor has previously been associated with worse QOL in patients with head and neck cancer (Aarstad et al. Reference Aarstad, Aarstad and Olofsson2008). It is possible that the use of humor in the present depressed subsample may reflect a superficial, deflective coping strategy rather than the type of humor reported elsewhere that can help patients meaningfully cope with a cancer diagnosis. Humor has the potential to be a useful clinical tool with patients and can also be a component of the focus of intervention. For example, MPM patients might be guided to appreciate humor as an experiential source of meaning in Meaning-Centered Psychotherapy (Breitbart et al. Reference Breitbart, Pessin and Rosenfeld2018) or as an opportunity for cognitive restructuring or relaxation in Cognitive Behavioral Therapy (Antoni et al. Reference Antoni, Lechner and Diaz2009).
Past literature suggests that women are more likely to endorse depressive symptoms than men (Kelly et al. Reference Kelly, Tyrka and Price2008). Similarly, older adults are less likely to endorse any mental health symptoms, even among those with cancer (Saracino et al. Reference Saracino, Cham and Rosenfeld2020). Given that the present sample was primarily male (70%) with a mean age of nearly 66 years, our results may underestimate the prevalence of these symptoms due to underreporting or a genuine discrepancy in distress experience between sexes. Similarly, participants did not report time since diagnosis, so inferences about how emotional well-being and coping might change over time could not be evaluated. The study was also limited by its somewhat homogeneous sample and its cross-sectional design. Future studies should evaluate larger samples from across diverse cancer centers and other community-based settings, where patients with a potentially wider range of concerns can be evaluated across the disease trajectory. The predominately White, married sample included in the present study may not generalize to other settings and populations. Therefore, this study should be expanded to engage patients from more diverse racial, ethnic, and socioeconomic backgrounds.
Study findings related to self-reported depression, QOL, and coping strategies represent a relatively large sample of patients for this uncommon disease. This research contributes to the small literature on psychosocial functioning in patients with MPM and provides putative directions for future larger studies and the development of interventions to provide appropriate support to diverse patients with MPM.
Conflicts of interest
The authors of this manuscript have no conflicts of interest to disclose.
