Screening for psychological and physical distress in a cancer inpatient treatment setting: a pilot study
Objective: Although several large distress studies have been conducted in outpatient oncology treatment settings, there are few, if any, studies that describe the incidence of psychological and physical distress in the inpatient oncology treatment setting. This pilot study hypothesized that inpatients experience levels of psychological distress that are equivalent to or greater than those reported in large outpatient studies. The study also sought to contribute to physical and psychological symptom distress incidence data.
Methods: Using two measures designed to screen for psychological and physical distress, the Brief Symptom Inventory—18 and the M.D. Anderson Symptom Inventory, 52 oncology patients were screened within 24 h of admission to a hospital oncology unit.
Results: Nearly two-thirds of the inpatient respondents reported levels of psychological distress that were not only within the clinically significant range but also at a rate that was nearly double that found in the outpatient distress screening studies that have been conducted to date. The physical symptoms most often rated at the severe level included fatigue (34.6%), pain (27.4%), and dry mouth (25.5%).
Conclusions: Failure to screen for psychological and physical symptom distress has lead to under recognition of a population that may have higher levels of distress than their outpatient counterparts and could potentially lead to uneven access to biopsychosocial support. Results support the notion that routinely screening for psychological and physical distress should become a first step in the assessment of the biopsychosocial needs of people receiving inpatient treatment for cancer. Copyright © 2011 John Wiley & Sons, Ltd.
Symptoms of psychological and physical distress can emerge and become burdensome at any point along the continuum of care for cancer. While several large-scale screenings for distress have taken place in outpatient treatment settings 1, 2, there is an absence of focused research on the incidence of psychological or physical symptom distress in inpatient cancer treatment settings. Furthermore, much of the extant literature regarding inpatient psychological distress reviewed in preparation for the current study through large databases (CINAHL, ProQuest, PsychInfo, and PubMed) reflected data gathered from studies that addressed a specific type or stage of cancer, intervention studies, or instrument validation studies that included inpatients within a larger sample of outpatients.
Given the oftentimes-reciprocal nature of psychological and physical symptom distress, the hypothesis for the present pilot study was that inpatient levels of distress exceed those found in large-scale outpatient studies. The goals of this study were to identify previously unrecognized levels of distress, provide incidence data regarding levels of psychological and physical symptom distress, and examine barriers to routine screening in the inpatient setting.
Psychological distress in outpatient settings
The National Comprehensive Cancer Network (NCCN) 3 has defined distress as ‘...a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment’ (DIS-2). Large scale outpatient studies indicate that feelings of worry, stress and depression that accompany a cancer diagnosis can vary in terms of severity, and in some instances, can reach clinically significant levels in people living with cancer. In two of the largest outpatient studies conducted in Canada (N=2776) 1 and in the United States (N=4496) 2, one in three patients screened reported levels of distress that were within the range of clinical significance.
Although psychological distress has been documented in outpatient settings; screening for symptoms of distress does not occur routinely 4. Barriers to routine screening for distress in outpatient settings have been located within health-care providers, health-care institutions, and patients. Significant barriers involve the reliance of health-care providers upon clinical observation rather than use of standardized instruments in screening for distress 5 and a lack of familiarity with screening instruments regarding the length, interpretation, or ways in which to respond to results 6. In addition to knowledge deficits, screening may not occur when time constraints, lack of staffing or an institutional focus on providing only biomedical intervention exist 7, 8. Identification of patients experiencing psychological distress can be further complicated by patients who may deny, minimize, or avoid exploration of emotions altogether in order to escape the reality of the disease and diminish fears 8.
Physical symptom distress
In the oncology literature, there is a strong body of evidence to support that physically distressing symptoms, frequently occur in combination with cancer symptoms as well as cancer treatment 9–11. For the purposes of this study, physical distress is defined as any physical symptom that creates discomfort, is bothersome, and/or interferes with daily activities. In 1993, one of the first studies exploring the relationship between fatigue, pain, and insomnia in women with lung cancer was published 12. Since then, incidence studies have indicated that, while people living with cancer can experience a variety of distressing physical symptoms, the most frequently reported symptoms include pain, fatigue, and insomnia 13–15. As with symptoms of psychological distress, physical symptom distress may be overlooked by clinicians and underreported by patients 15, 16.
Patients with a cancer diagnosis and admitted for acute inpatient care were initially screened for inclusion in the study within the first 24 h following admission. Prior to meeting with potential participants, demographic and clinical data from the medical record were assessed by the researchers. To be considered for inclusion, potential participants were required to have: reached a minimum age of 18 years, awareness of their cancer diagnosis, sufficient mental and physical functional status for completing screening instruments, and an ability to understand written English. Patients meeting these criteria were subsequently approached by a member of the research team and, following an explanation of the study and providing written informed consent, were invited to take part in the study and given the study instruments. Demographic and health data were gathered from the medical records of patients who chose not to respond to study instruments for later comparison with study responders. The study was conducted following approval by the Institutional Review Board for the hospital system in which the research was conducted.
While both of the distress inventories selected for this study include dimensions of psychological and physical symptom distress, neither inventory comprehensively screens for both types of distress. The Brief Symptom Inventory—18 (BSI-18) is a measure of psychological distress that contains 18 symptom-based items. The BSI-18 measures psychological distress by means of a single global scale and three symptom-based subscales for somatization, depression, and anxiety. With 0.91 sensitivity and 0.93 specificity, the BSI-18 has been found to have good internal reliability (Cronbach's alpha = 0.89), was written to be understood at a sixth grade reading level, and takes approximately 4 min to complete 17.
The M. D. Anderson Symptom Inventory (MDASI) is a measure of subjective physical symptom distress. Respondents are asked to rate the severity of 13 core physical and emotional symptoms on a scale of 0 (Not Present) to 10 (As Bad As You Can Imagine). The core items are used to predict symptom distress and include a range of symptoms from pain, nausea, and fatigue to numbness or tingling 10. Items 14–19 identify general areas of functioning and ask respondents to indicate the degree to which the core symptoms have interfered with functioning on a scale from 0 (Did Not Interfere) to 10 (Interfered Completely). The MDASI can be easily self-administered, takes less than 5 min to complete, and the 13 core items have achieved reliability values from 0.82 to 0.92 10.
Patient Demographic and Health History Questionnaire: An 18-item questionnaire in checklist format was created by the researchers for the purpose of collecting data regarding participants' personal, social, and health characteristics.
Demographic and clinical characteristics
In all, 80 potential participants were approached during the course of the study. Nearly two-thirds of those approached (65%; n = 52) agreed to participate in the screening process. Of the 52 who elected to complete the screening instruments, 29 were women (55.8%) and 23 were men (44.2%) with a median age of 55.6 years. More than two-thirds of participants identified themselves as Euro-American or white (n = 36; 69.2%) followed by African-American (n = 2; 3.8%), Native American (n = 4; 7.7%), and Asian-Pacific Islander (n = 4; 7.7%). Nearly 64% of the sample were married (n = 33) and two (3.8%) self-identified as partnered. The most frequently diagnosed cancers among the sample were leukemias (n = 12; 23.1%), non-Hodgkin lymphoma (n = 9; 17.3%), and colorectal (n = 7; 13.5%). These were followed by lung (n = 6; 11.5%) and breast (n = 4; 7.7%) cancers. More than half the sample had been living with a cancer diagnosis from 1 to 12 months (n = 33; 63.5%).
Using a Mann–Whitney test, demographic and clinical characteristics were compared between the responder and non-responder groups. There were no significant differences between the groups on any of the variables with the exception of recent and past treatment with chemotherapy at p = 0.049 and 0.020, respectively, indicating that the responder group reported more experiences with chemotherapy.
The presentation of psychological distress differs between men and women and normative BSI-18 global severity index scores for caseness have been established at 10 for men and 13 for women 2. Of the 52 patients completing the BSI-18, 33 (63.5%) scored within the range of psychological distress for their sex (Table 1). Fifteen of the twenty-three male responders (65.22%) reported symptoms of distress within the clinical range while 18 of the 29 female responders (62.1%) had scores within this range.
Table 1. Psychological distress—BSI-18 Global Severity Index (n = 52)
Physical distress incidence, severity and interference
Symptom incidence was determined by the number of MDASI core symptoms endorsed at ⩾1. There were no asymptomatic participants and the number of symptoms reported by each participant ranged from 2 (n = 1) to 13 (n = 5) with an average of 8.60 symptoms experienced simultaneously. The symptoms most frequently reported by participants included feeling drowsy (92.2%), fatigue (84.0%), and insomnia (78.8%). These symptoms were followed by lack of appetite and feeling sad with 75% of the sample reporting these symptoms. The symptoms that were the least frequently endorsed included shortness of breath (51.0%), nausea (49.0%), and vomiting (29.4%).
Symptom severity was examined using mean symptom severity scores as well as levels of severity for individual symptoms. The most severe symptoms, by mean symptom score, for responders were fatigue ( = 4.90; SD = 3.45), feeling drowsy ( = 4.06; SD = 2.71), insomnia ( = 3.46; SD = 3.01) and pain ( = 3.45; SD = 3.58). The symptoms with the lowest mean scores were numbness and tingling, ( = 2.41; SD = 3.13), nausea, ( = 2.20; SD = 3.07), and vomiting, ( = 1.88; SD = 3.38).
Based upon other symptom severity studies 10, 18, 19 individual symptom severity was provisionally established by the researchers as moderate at 5–6 and severe at 7 or higher. The symptoms most often rated at the severe level included fatigue (34.6%), pain (27.4%), and dry mouth (25.5%). Drowsiness and insomnia were rated at the severe level in 25% of respondents. The symptoms that were most often rated at the moderate level included distress in 15.6% of responders as well as fatigue and feeling drowsy, with both occurring in 15.4% of responders. Feeling sad, remembering things, and shortness of breath were each endorsed at the moderate level of severity in 11.5% of responders. Mean MDASI symptom scores for each of the 13 core items of the MDASI and individual symptom severity are reported in Table 2. Symptom interference with functioning (Table 2) was highest for daily functions related to work ( = 5.54; SD = 4.00) and general activity ( = 5.42; SD = 3.92), while mood ( = 3.56; SD = 3.28) and relations with other people ( = 3.04; SD = 3.48) were the functions least affected by symptoms.
Table 2. Physical symptom distress—MDASI Core Items–Item Scores and Severity (n = 52)
|Lack of appetite||170||3.27||3.18||75.0||7.7||19.2|
|Shortness of breath||127||2.45||3.13||51.0||11.5||13.4|
|MDASI Interference Items (n = 52)|
|Item||Score||Mean||SD|| || || |
|Work||288||5.54||3.92|| || || |
|General activity||282||5.42||3.84|| || || |
|Enjoyment of life||272||5.24||3.73|| || || |
|Walking||253||4.86||3.75|| || || |
|Mood||185||3.56||3.22|| || || |
|Relations with other people||58||3.04||3.41|| || || |
Barriers to conducting distress screening in the inpatient setting
The third focus of the study was to examine barriers to routine screening in the inpatient setting. Two institutional barriers and one patient-related barrier were identified. Until this study, distress screenings had not been routinely conducted in the study setting and distress screenings had to be presented to potential participants as research requiring signed consent. A related institutional barrier was having timely access to patients. Because access to patients was not possible until after admissions processes had concluded, it was not uncommon for the commencement of diagnostic and treatment procedures to eliminate opportunities for completing the screenings. The solitary patient barrier involved many potential participants opting not to participate citing a lack of ease or sense of suspiciousness about participating in screenings that were presented as research.
A primary goal of the study was to present incidence data regarding levels of psychological and physical symptom distress among people receiving inpatient cancer treatment. Study findings indicate that nearly two-thirds of the inpatient respondents reported levels of psychological distress; a rate that is nearly double that found in the outpatient distress screening studies conducted to date. In addition to reporting on the incidence of psychological distress, this study found that all respondents in the sample reported experiencing at least one disease-related physical symptom on the MDASI and many experienced several symptoms simultaneously. This supports the notion that physical symptom distress in people with cancer can be composed of a combination of symptoms 20.
In addition to the previously discussed institutional barriers, this study has several limitations including low response rate and limited generalizability. Nonetheless, failure to screen for psychological and physical symptom distress in the inpatient oncology treatment setting can lead to under recognition of a population that may have higher levels of distress than their outpatient counterparts and could potentially lead to uneven access to psychological support. This study demonstrated that screening can be accomplished through the routine use of brief screening instruments. Results support the notion that routinely screening for psychological and physical distress should become a first step in the assessment of the biopsychosocial needs of people receiving inpatient treatment for cancer.