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© 2001 American Society for Clinical Oncology Psychosocial Characteristics of Individuals With Non–Stage IV MelanomaFrom the Behavioral Medicine Program and Departments of Dermatology, Otolaryngology, Biostatistics, Psychiatry, and Surgery, University of Michigan, Ann Arbor, MI. Address reprint requests to Peter C. Trask, PhD, Behavioral Medicine Program, 475 Market Place, Suite L, Ann Arbor, MI 48108; email: pctrask{at}umich.edu
PURPOSE: Melanoma is the fastest growing solid tumor among men and women and accounts for 79% of skin cancer–related deaths. Research has identified that distress is frequently associated with a diagnosis of cancer and may slow treatment-seeking and recovery, increasing morbidity and even mortality through faster disease course. Given that the 5-year survival rates for individuals with melanoma are determined primarily by the depth and extent of spread, distress that interferes with seeking treatment has the potential to be life-threatening. PATIENTS AND METHODS: The current study was designed to identify levels of distress present in individuals seeking treatment at a large, Midwestern, multidisciplinary melanoma clinic. It also focused on determining the quality of life, level of anxiety, and coping strategies used by individuals with melanoma before treatment. Given that the course of treatment and outcome for patients with stage IV disease is vastly different from that of patients with stages I to III disease, they were excluded from the study. RESULTS: Results indicated that most individuals who are presenting to a melanoma clinic do not report a clinically significant level of distress. However, there is some variability in this, with 29% of patients reporting moderate to high levels of distress. Moreover, analyses suggest that distressed individuals are more likely to use maladaptive coping strategies, such as escape-avoidance coping, and to have poorer quality of life. CONCLUSION: Although most individuals do not present with significant levels of distress, a significant minority are distressed and rely more heavily on coping strategies that do not benefit them. Such individuals would likely benefit most from psychological intervention.
QUALITY OF LIFE (QOL) has been identified as an important outcome in research with cancer patients for the past 15 years. One important component of QOL is the amount of emotional distress an individual is currently experiencing. Until recently, however, a process of formal evaluation and treatment of distress to improve QOL has not been a major consideration associated with the treatment of cancer patients. This continues to remain the case despite the fact that clinical research over the past 25 years has consistently demonstrated that approximately one third of all cancer patients have distress that reaches clinically significant levels.1-4 In addition, although distress is occasionally of sufficient severity to meet criteria for a psychiatric diagnosis, it is often missed by nonpsychiatric physicians who comprise the vast majority of health-care providers for most cancer patients.5-7 As the number of referrals to cancer clinics increases, it will be advantageous for clinicians to have an effective means of identifying and treating distress in their patients to ensure optimal outcomes, including QOL. Having distress as a target for assessment and subsequent intervention within standard treatment protocols is of importance given its potential effects on disease course, service utilization, institution costs, and patient and family QOL. For example, high levels of distress have been found to slow recovery, increase morbidity, and hasten mortality through faster disease course and even suicide.8,9 Specific illnesses have been linked to alterations in mood,10,11 and alterations in mood have been found to be correlated with immune system functioning, with negative mood related to lower immune response.12,13 With regard to the cost of medical service utilization, emotional distress has been associated with increased costs of up to four times those of nondistressed patients.14 Finally, the impact of emotional distress is also recognized by the patients’ children, spouse, and other family members15; as patients become increasingly distressed, their social and personal QOL decreases. Given its deleterious effects on patients’ personal health, family, and institutional systems, an efficient means of identifying and treating distress may also be useful for consideration in improving the quality and decreasing the costs associated with patient care.16 Recently, the National Comprehensive Cancer Network identified the evaluation and management of emotional distress as an important and necessary part of treating individuals with cancer.17 According to its guidelines, treatment for all patients with cancer should include an assessment of distress, with appropriate referrals for follow-up psychosocial and behavioral treatments based on distress severity. Unfortunately, the implementation of such guidelines is frequently difficult within busy medical centers and argues for the need for institution-specific approaches for incorporating these suggestions into daily practice within specific cancer populations. One such population worthy of this approach is melanoma patients. Melanoma is the fastest growing solid tumor in men and women, and despite accounting for only 4% of skin cancer cases, it accounts for more than 79% of skin cancer–related deaths. Current projections indicate that approximately 51,400 Americans are expected to be diagnosed with melanoma in the year 2001.18 The increasing incidence rate for melanoma is of some concern, given that it is a particularly deadly form of cancer if allowed to advance; the 5-year survival rate, although encouraging when melanoma is diagnosed early, decreases significantly with disease stage. In particular, although 5-year survival is more than 96% for stage 0 and 92.5% for stage I, it drops to 74.8% for stage II, 49% for stage III, and 17.9% by stage IV.19 Thus, if distress is present to the degree that it inhibits patients from seeking professional advice and following through with recommendations, it may place this population at elevated risk for morbidity and mortality resulting from advancing disease course. Because of the rapidly increasing incidence and potential for lethality of melanoma, patients with this diagnosis may be considered an appropriate group with whom to apply new methods aimed at evaluating and treating distress. There exist three major points at which distress in melanoma patients may be present and influencing QOL or aspects of treatment (eg, decision making): diagnosis, treatment, and follow-up. First, distress at diagnosis may impair an individual’s ability to listen to treatment options effectively, comply with recommendations, or make informed decisions. There is some evidence that distress impairs decision making in other areas and could therefore function similarly in patients with melanoma.20-22 Second, distress at treatment, whether a consequence or antecedent of treatment, has been associated with its termination. Given that several treatments for melanoma (eg, interferon alfa 2b, chemotherapy) can increase levels of distress (see review in Trask et al23), assessment at this time point is important as it may subsequently lead to interventions that could encourage completion of therapeutic protocols. Finally, distress present at follow-up may interfere with recommendations to follow strict screening (ie, regular skin examinations and appointments with dermatologists) and preventive behaviors (eg, avoiding sunlight, wearing protective clothing, and using sunscreen).24 The literature on psychological factors in melanoma to date has examined (among other things) associations between distress and sex differences, tumor thickness, and onset and recurrence of disease, as well as potential associations between psychosocial variables and factors prognostic of death and recurrence.25-29 Some research has found differences in distress by sex, with women reporting greater distress than men30,31; however, distress has not been found to differ by tumor thickness.30,31 At least one study has reported an association between significant stresses likely to increase distress and disease occurrence in melanoma patients.32 However, this study used a retrospective case-control design and used a small sample (N = 56) of patients in stages I and II only, compromising the interpretability and generalizability of the results. Significant associations between distress, coping, and recurrence have also been reported, but with few exceptions (eg, Fawzy et al33), studies in this area tend to suffer from significant methodological shortcomings. Nevertheless, the research findings thus far suggest that earlier identification and treatment of distress may reduce delays in seeking professional consultation and treatment; encourage completion of therapies and adherence to treatment, prevention, and screening recommendations; and perhaps reduce the risk of recurrence. The current study was designed to provide a prospective account of distress, QOL, and coping strategies used by patients coming to a large, Midwestern, multidisciplinary melanoma clinic for staging and treatment of melanoma. It represents the first part of a continuing study to assess, evaluate, and treat distress in melanoma patients. The present article presents the results of analyses conducted on baseline assessment variables, taken when patients presented to the clinic for their initial consultation appointments. We believe the patients referred to this clinic to be largely representative of the type of patients likely to be referred to other clinics, and therefore we present this data as informative in terms of identifying which patients are likely to be distressed.
Participants Participants for the study were recruited after approval of the study was obtained from the University of Michigan’s institutional review board. Individuals are referred to the Multidisciplinary Melanoma Clinic by primary care physicians, dermatologists, internists, and surgeons either for treatment or for a second opinion/recommendations for treatment. All referrals have biopsy-proven melanoma. Individuals were eligible for participation in the study if they were over the age of 18 years, could read and understand English, had no history of chemical dependency, inpatient psychiatric treatment, or head injury with loss of consciousness, and did not have stage IV melanoma. Individuals with stage IV melanoma were excluded from the study because of the advanced nature of their disease and poor prognosis. During the period of study reported here, 670 of the patients referred to the Multidisciplinary Melanoma Clinic met criteria for the study. Of these, 335 (50%) agreed to hear more about the study, and 287 (43% of those originally referred ) on hearing more agreed to participate. A total of 178 (62%) of the 287 individuals returned data. Average age was 52.2 years (range, 22 to 86 years). Table 1 lists the participants’ demographic characteristics and stage of melanoma.
Measures Brief Symptom Inventory (BSI). The BSI is a 53-item measure of emotional distress that takes between 5 and 10 minutes to complete.34,35 It is the short version of the SCL-90-R and has well-demonstrated reliability and validity.36 Individual items are answered on a 0 (not at all distressed) to 4 (extremely distressed) scale and are summed into one of nine clinical scales and three summary scales. Principal among these is the General Severity Index (GSI), which provides the most sensitive measure of overall distress. The BSI is standardized using area T scores, each with a mean of 50 and an SD of 10. The BSI was chosen for this study because of its general acceptance and use within the cancer population, ability to demonstrate differing levels of distress over time, and relatively short administration time. Medical Outcomes Survey Short Form 36 (SF-36). The SF-36 is a 36-item questionnaire assessing health functioning.37 It is composed of eight scales, including physical functioning, social functioning, bodily pain, and mental health. It has demonstrated reliability and validity. The SF-36 was chosen over several more specific measures of QOL (eg, the Functional Assessment of Cancer Treatment or Functional Living Index–Cancer) because of the desire to obtain a measure of initial health functioning when individuals may be unaware of their diagnosis of cancer. Because the SF-36 does not specifically mention cancer, individuals are not likely to become more distressed by completing the questionnaire. It is used in the current study as a general measure of QOL. Ways of Coping (WOC). The WOC is a 66-item questionnaire that assesses individual coping processes.38 The WOC has eight scales (confrontive coping, distancing, self-control, seeking social support, accepting responsibility, escape-avoidance, planful problem solving, and positive reappraisal) that may be scored using the sums for each scale as raw scores or a relative score of each scale compared with the rest. The relative scores therefore represent respondents’ estimates of their percentage of reliance on each type of coping process, relative to the rest of the processes presented. Both scoring methods are used regularly in research and are considered reliable and valid. Relative scores were used in the current study. The WOC was chosen for this study to determine the various coping processes used by individuals presenting to the melanoma clinic. In addition to a description of general coping processes, the WOC was used to determine whether types of coping are associated with increased distress. State-Trait Anxiety Inventory (STAI). The STAI is a 40-item questionnaire designed to assess transient or situational and stable or dispositional symptoms of anxiety.39,40 The questionnaire consists of two series of 20 statements that have been used to describe individuals (eg, "I feel nervous and restless"). Participants are asked to respond to the first 20 statements (assessing state anxiety) according to how well each describes them at the moment they complete the questionnaires and to the second (assessing trait anxiety) according to how they generally feel. Responses are rated from 1 ("not at all"/"almost never") to 4 ("very much so"/"almost always"). Scores are summed and divided by 20 to provide average state and trait anxiety scores. Test-retest stability coefficients are reasonably high for the trait scale and low for the state scale as expected given the two aspects of anxiety measured.40 The STAI was chosen to provide an additional measure of anxiety and because of its ability to differentiate between situational and more characteristic manifestations of anxiety.
Procedure
Statistical Analyses
Baseline Distress, Anxiety, and QOL The results of the BSI, STAI, and SF-36 scales are presented in Table 2. As a group, individuals with melanoma did not demonstrate significantly high mean levels of distress or anxiety or significantly low mean QOL ratings. There was, however, considerable variability in these responses. In fact, 29% of the sample reported distress scores greater than 60 on the GSI, indicating clinically significant levels of distress.
Baseline Coping Individuals presenting to the melanoma clinic generally reported relying on a variety of strategies to cope with stressors. As a group, melanoma patients reported relying most heavily on seeking social support (19.9%), problem-solving (16.2%), and self-control (15.7%) coping, compared with other strategies available to them. Relatively high reliance on distancing coping (13.7%) and positive reappraisal (13.2%) were also noted. Conversely, participants indicated less reliance on maladaptive coping styles such as accepting responsibility (5.6%), confrontive coping (7.2%), and escape-avoidance coping (8.5%), as a percentage of their total effort.
Baseline Correlations
Individuals Distressed at Baseline To further explore the relationship between distress, QOL, anxiety, and coping, we divided individuals by scores on the GSI, using 60 as the cutoff for determining clinically significant distress. We compared those scoring below 60 (low distress) to those scoring at 60 or above (high distress) on a variety of characteristics. This division resulted in 50 high-distress individuals and 125 low-distress individuals. As such, 29% of individuals presenting to the melanoma clinic exhibited high levels of distress.
Univariate analyses of variance corrected for multiple comparisons revealed differences in mean scores consistent with the previous correlations. In particular, groups differed on physical functioning (F1,173 = 4.85, P = .03), effects on role owing to physical functioning (F1,173 = 5.17, P = .03), bodily pain (F1,173 = 8.71, P = .005), mental health (F1,173 = 80.81, P = .0001), effects on role owing to mental health (F1,173 = 29.97, P = .0001), social functioning (F1,173 = 32.52, P = .0001), vitality (F1,173 = 40.98, P = .0001), and general health (F1,173 = 7.23, P = .01). In all cases, high-distress individuals reported lower levels of QOL and functioning. Groups also differed on two WOC scales, escape-avoidance coping (F1,173 = 26.39, P = .0001) and problem-solving coping (F1,173 = 8.10, P = .005), with high-distress individuals reporting greater reliance on escape-avoidance coping and less problem solving. Finally, groups differed on anxiety as measured by the STAI (state, F1,173 = 56.02, P = .0001; trait, F1,173 = 64.43, P = .0001). Not surprisingly, high-distress individuals reported higher levels of both state and trait anxiety.
The results of this study provide an assessment of distress in patients coming to a multidisciplinary melanoma clinic. Consistent with previous research with cancer patients,1,41 results from the current study indicate that although melanoma patients have average levels of distress that do not differ from a healthy population,35 a sizable proportion (29% in the current sample) exhibit significantly higher levels of distress. These are the patients for whom psychoeducational and support interventions may be most warranted and beneficial. In the present study, increasing distress was associated with impaired functioning in a variety of areas, including physical, social, and psychologic functioning. More specifically, results from this study indicated that individuals with high levels of distress had significantly worse evaluations of current and future personal health, higher ratings of pain intensity and limitations secondary to pain, decreased energy ratings, and greater interference from physical and emotional problems on normal social activities when compared with those with low distress. Not surprisingly, participants’ ratings of both transient and stable anxiety symptoms also were significantly higher in high-distress individuals. Consistent with previous research,30,31 distress groups did not differ by stage of illness. These results speak to the constellation of personal, social, and physical difficulties associated with general distress, irrespective of the stage of melanoma. The significantly higher levels of trait anxiety in individuals with high distress also indicate the importance of identifying those individuals who may be especially at risk for becoming distressed by virtue of their characteristic response tendencies and coping strategies. The results also speak to the validity of the BSI GSI as a measure of general distress for melanoma patients. In interpreting these results, it may be postulated that the increases in distress and corresponding decreases in QOL result, at least in part, from individuals’ reliance on particular coping techniques. Results from the current study indicate that increased distress was associated with heavier reliance on taking personal responsibility for events (accepting responsibility coping), engaging in wishful thinking or attempting to disengage from the issue at hand (escape-avoidance coping), and less reliance on taking an analytic approach in attempts to solve problems (problem-solving coping). Given the associations observed in the current study, it may be that interventions aimed at changing levels of one variable would be associated with changes in another. Thus improving coping strategies may serve to decrease distress and improve QOL (or decreasing distress may lead to increased reliance on more adaptive coping strategies). As the incidence of melanoma continues to increase and the age at which it is diagnosed continues to decrease, more and more patients will be referred to clinicians for consultation regarding prevention, diagnosis, and treatment. With this, the incorporation of high-quality assessments of distress will take on increasing importance. The consistent evidence that psychosocial factors are related to disease onset, recovery after medical intervention, and recurrence, in addition to the role distress may play in decision making and patients’ abilities to follow their physicians’ recommendations, speaks to the need for efficient and effective assessment and treatments for distress. Results from the current study indicate that at the initiation of contact with a large, Midwestern, multidisciplinary melanoma clinic, approximately one third of participants reported levels of distress high enough to warrant clinical attention. This distress was associated with impairments in social, emotional, and physical functioning; it was also associated with a general, characteristic tendency toward being anxious, heavier reliance on accepting personal responsibility for events, attempting to avoid or detach from these events, and less use of analytic, problem-solving strategies. To our knowledge, this represents the earliest prospective study of distress and associated problems with QOL and coping in melanoma patients. Several caveats to the current study should be addressed. First, the study did not include either a control population of healthy subjects or a comparison group of cancer patients. As such, no direct comparisons with such groups can be made within this study. Despite this, however, the results of the current study, in both the average ratings of distress and caseness or proportion of distressed participants, are consistent with those reported for melanoma patients by Zabora et al41 (mean GSI = 51.33, 32.7% high-distress cases). They are also consistent with the percentage of high-distress patients reported in other studies of cancer patients.1-3 In addition, the scores from the SF-36 subscales are consistent with levels of physical functioning, bodily pain, vitality, and general health perceptions reported by minor medical patients.42 Taken together, the results of the current study suggest that melanoma patients are similar to other cancer patients and populations with minor medical problems, but argue for additional studies that include comparison groups. A second caveat is the fact that because the results of the current study are cross-sectional, conclusions regarding the direction of significant relationships can not be made. Longitudinal approaches will allow this limitation to be addressed. Although this article presents results from the initial assessment of melanoma patients, it represents only part of a larger longitudinal project designed to describe the course of distress and, once identified, provide a treatment for individuals who report high levels of distress. The aims of this larger project are to determine whether a significant proportion of patients continue to report clinically significant levels of distress over time, whether the characteristics associated with distress at the time of initial contact with the system are also associated with later distress, and whether the provision of a brief, structured intervention is successful in decreasing reported levels of distress. To manage effectively the future increasing number of referrals to medical and mental health clinicians for patients with melanoma, it will be important to know how to assess and treat distress. The results presented here provide useful information with regard to identifying those patients most likely to experience high levels of distress.
We thank Mitzi Rabe, BSN; Amy Sereno-Young, BSN; Lily Shiah, RN; Ana Meireles, BS; and Cristina Bares, BA, without whom this research could not have been conducted.
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Copyright © 2001 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
2 analyses were conducted to determine whether categorical variables differed by distress group. Univariate analyses of variance were conducted to compare scores on continuous variables between those in the high and low distress groups. All P values reported are two-tailed, and all statistical analyses were performed using the Statistical Package for Social Sciences, version 10 (SPSS, Inc, Chicago, IL). 
