Distress screening in a multidisciplinary lung cancer clinic: Prevalence and predictors of clinically significant distress
Introduction
The consensus-based guidelines set forth by the Distress Management Panel of the National Comprehensive Cancer Network (NCCN) include a recommendation for comprehensive distress screening for all patients at their initial visit and across the disease continuum [1], [2]. Distress has been defined as “a multifactorial, unpleasant experience of an emotional, psychological, social, or spiritual nature that interferes with the ability to cope with cancer, its physical symptoms, and its treatment” [1], [2]. In the oncology context, distress is multifactorial, as numerous areas in a patient's life contribute to his or her experience of distress, including physical symptoms, disease severity, treatment [3], [4]; physical activity level/performance status [5], [6], [7]; social support (for a review see [8]); and psychological factors such as optimism [9], [10], coping style [11], [12], and pre-morbid or current depression [13].
In addition to the above factors, rates of distress often vary depending on age, sex, and site of cancer [11], [14], [15], [16]. Younger patients and women report higher levels of distress [7], [11], [14], [15], and individuals with lung cancer, compared to individuals with other cancer diagnoses, also report higher levels of distress [15], [17]. Approximately 43% of patients with lung cancer report clinically significant levels of distress [15], [18], compared to about 33% of patients with breast cancer and 32% of patients with colon cancer [15].
Just as lung cancer patients are more likely to experience distress than other cancer patients, having a diagnosis of lung cancer was predictive of oncologists’ failure to correctly identify distress [19]. Categorizing distress as mild, moderate, or severe, oncologists inaccurately identified distress in 68% of patients with lung cancer (compared to 52% for other cancers with the exception of head and neck cancer, which was also high at 67% [19]). Distress and other psychosocial symptoms may not be accurately identified by oncology health care professionals for several reasons. Given the medical focus on physical symptoms and treatment, emotional and psychological symptoms may be overlooked or discounted. Physicians cite lack of time and lack of confidence as barriers to detecting certain physical and psychosocial symptoms [20]. Symptoms that practitioners may under- or misidentify include depression, pain, fatigue, and overall quality of life concerns [21], [22], [23], [24], [25], [26]. Patients may be embarrassed or reluctant to report psychological problems, such as depressive symptoms [27]. Less than one in four patients with psychological problems spontaneously disclose those problems to their treatment team because of concerns about bothering the nurses or physicians or fear of being stigmatized for having an emotional problem [28]. As a result of both physician and patient barriers toward the reporting and identification of distress symptoms, such concerns may go untreated.
Left untreated, significant levels of distress may contribute not only to lower quality of life and lower satisfaction with care [29], but also to poorer adherence to treatment recommendations and possibly decreased survival [30], [31], [32]. In recognition of the potential impact of untreated distress, guidelines from the NCCN suggest:
Distress should be recognized, monitored, documented, and treated promptly at all stages of disease. All participants should be screened for distress at their initial visit, at appropriate intervals, and as clinically indicated, especially with changes in disease status (i.e., remission, recurrence, progression) [1].
The Distress Thermometer (DT) is a visual-analog tool developed to efficiently screen for distress in cancer patients [7], [33], [34], [35]. The sensitivity, specificity, and appropriate cut-off score of the DT are established [16], with scores of 4 or above indicative of clinically significant levels of distress. Through receiver operating characteristic (ROC) curve analyses, Jacobsen et al. compared scores on the DT to evidence-based cut-off scores on psychometrically valid measures of distress, the Brief Symptom Inventory and the Hospital Anxiety and Depression Scale [16]. Females and patients with lower self-reported performance status had higher levels of clinically significant distress. No other demographic or clinical variables, including stage of disease or type of treatment, were associated with scoring 4 or higher on the DT. The DT thus represents a brief measure that is both sensitive and specific to detecting distress in individuals with cancer.
The DT has been used to evaluate distress in patients diagnosed with prostate cancer [33], patients undergoing bone marrow transplant [34], and ambulatory cancer patients with mixed cancer diagnoses [7], [16], [35]. Categories of symptoms consistently associated with clinically significant levels of distress on the DT were emotional, family, and physical problems. Inconsistent results were found for the relationship between clinically significant distress and spiritual problems [16], [35]. In addition to clarifying the problem categories that contribute most to distress, researchers have called for future studies to focus on homogeneous diagnostic groups [35] and expansion of the symptom problem list frequently used with the DT to include a format for patients to identify other potential sources of distress and/or the issues for which they would most like help [16]. The present study addresses these issues through our focus on patients evaluated and treated in a lung cancer clinic and through the adaptation of the symptom problem list (see Section 2.3.3).
In prior research on the DT with ambulatory cancer patients, less than 100 lung cancer patients participated across three studies [7], [16], [35]. Given that lung cancer is the leading cause of cancer-related death for women and men [36], additional information on rates and predictors of distress in this population is needed. Recent worldwide estimates indicate that lung cancer remains the most frequently diagnosed cancer (1.35 million in 2002) and the leading cause of cancer deaths worldwide (1.18 million in 2002 [37]). One-year relative survival rates for lung cancer patients have increased from 37% in 1975 to 42% in 2000; however, the 5-year relative survival rate for all stages of lung cancer is only 15.2%, compared to 5-year relative survival rates of 87.7% for breast cancer and 63.4% for colorectal cancer [36].
Even with a conservative estimate of the percentage of patients experiencing distress (e.g., 20% compared with the documented rate of 43% in lung cancer patients [15]), hundreds of thousands of patients with lung cancer likely experience clinically significant distress. Despite the large numbers of lung cancer patients and high rates of distress in this population, specific predictors of distress and its overall prevalence remain understudied in lung cancer patients [13]. In the largest study to date documenting rates of distress across different cancer sites, Zabora et al. highlighted patients with lung cancer as a group at high risk for experiencing distress and emphasized that “special attention in terms of early detection and intervention [of distress in lung cancer patients] is warranted” ([15] p. 26).
Thus, in the present study, we sought to establish the rates and predictors of distress in a sample of patients seeking care in an outpatient multidisciplinary lung cancer clinic. The primary objectives were to (1) document rates of overall and clinically significant distress in an outpatient lung cancer clinic sample and (2) evaluate the demographic, clinical, and symptomatic predictors of overall distress and clinically significant distress. A secondary aim was to evaluate the clinical, demographic, and symptomatic predictors of the desire for clinical services to help with distress.
Section snippets
Participants
Participants were consecutive patients who were seen in the Multidisciplinary Lung Cancer Program (MLCP) at Markey Cancer Center, Lexington, Kentucky. Eligibility criteria were ≥18 years of age, appointment with a MLCP physician (cardiothoracic surgeon, pulmonologist, medical oncologist, or medical radiologist), ability to speak English, and willingness to complete the DT. Patients were seen in the MLCP for evaluation of symptoms, consultation by a MLCP team member, or routine post-operative or
Demographic and clinical characteristics
DTs were collected from 415 patients in the MLCP as part of routine clinical care. Less than 3% of approached patients declined to complete a DT. These patients did not differ from completers on age or sex. Medical data was not collected on decliners and thus we were unable to compare decliners to completers on any medical data. Of the 415 patients completing DTs, 25 (6% of sample) were excluded from analyses due to missing or unavailable medical record data. These participants did not differ
Discussion
More than half of the patients seen in a multidisciplinary outpatient lung cancer clinic reported clinically significant levels of distress. Distress was predicted by problems in the areas of family relationships, emotional concerns, information concerns, physical symptoms, and cognitive functioning. Specific symptoms predictive of distress included depression, anxiety, pain, and fatigue. Consistent with previous research, younger patients were more likely to report higher levels of distress
Conflict of interest statement
None declared.
Acknowledgements
Supported by a Ruth L. Kirschstein National Research Service Award F32CA97760 from the National Cancer Institute (K.D. Graves). We thank Timothy Mullett, MD and Eric Bensadoun, MD, for support of the distress screening process and access to patients. We also thank Susan Revo and Stephen Erena, MS, for assistance with distress screening, and Mike Poynter for assistance with data extraction from the MLCP database.
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