Psychological Aspects of Carcinoid Disease:

A Study of Carcinoid Patients and Caregivers

Elizabeth Soliday, Ph.D. and Suzanne Smith, Ph.D.

INTRODUCTION

Study Purpose

Clinicians, patients, and patient families generally acknowledge the tremendous impact that carcinoid disease and its treatment can have on quality of life. Yet, only nine articles have been published on the psychological aspects of carcinoid disease, compared to the nearly 9,000 articles published in the past ten years on psychological aspects of other cancer diagnoses. To provide clinicians and patients systematic information on the psychological consequences of this under-researched illness, the goals of this pilot study were to:

• identify the levels of general psychological distress – including depression and anxiety -- in patients diagnosed with carcinoid disease and in caregivers;

• examine how optimism and coping may buffer the distress reported by carcinoid patients and caregivers;

• explore quality-of-life issues unique to carcinoid patients that are not measured in surveys of depression and anxiety, including how the illness affects individual and family functioning.

Background

The stress of living with and managing chronic illness can be challenging even for the most well adjusted and well supported individuals and their families, and the diagnosis of cancer seriously impacts most patients’ lives as they adjust to the responsibilities associated with disease management and the prospect of a shortened life span. As well, this illness would understandably impact the family. As medical advances improve patients' medical prognoses, understanding cancer's long-term effects on patients’ and caregivers’ quality of life becomes increasingly important to clinicians and families.

For this reason, a great deal of research has been conducted in the past 20 years on the psychological adjustment of patients who have cancer diagnoses such as breast cancer, colon cancer, and cervical cancer. This body of research indicates that cancer patients and caregivers have slightly elevated psychological distress off and on during the course of illness; this pattern appears relatively normal and is to be expected given the stress of illness and its management. Prolonged or severe distress can result from the presence of multiple stressors, a lack of adequate social support, or from ineffective or maladaptive coping strategies. Prolonged and/or severe psychological distress has been found to affect cancer patients' social functioning, treatment adherence, treatment effectiveness, and quality of life for patients and their families.

The intensity and course of depressive and anxious symptoms are of great interest to the medical and psychological community because they are among the most frequently overlooked medical difficulties in chronically ill patients. Overlooking potential cases of elevated depression and anxiety is unfortunate because once properly diagnosed, depressive and anxiety symptoms can respond very well to appropriate medical and psychological treatment. It is also important to detect potential anxiety and depressive symptoms because these symptoms have been found to influence the course of illness and quality of life in cancer patients.

Although much research has been conducted identifying cancer-related distress and its buffers in several oncology subgroups, the nature and intensity of psychological distress experienced by carcinoid patients remain to be assessed. Of the nine articles published on psychological aspects of carcinoid disease, eight only peripherally relate to patients' psychological functioning. The lack of research on carcinoid patients' psychological functioning stands in contrast to the nearly 9,000 articles published in the past ten years on psychological aspects of other forms of cancer.

Because of the potential quality of life implications, we measured depressive and anxious symptoms with the goal of informing the medical community of the prevalence of these conditions in carcinoid patients and caregivers, which has until this study been virtually overlooked. We also aimed to initiate inquiry into the potential buffers of anxious and depressive symptoms in patients and caregivers. Information gained from this study will be used to educate medical and patient communities on the ways in which the illness affects patients psychologically and on potential buffers of distress. This study will also contribute to the knowledge of cancer's psychological effects so that interventions to improve quality of life can be advanced.

RESEARCH METHODS

To address the first two study objectives -- identifying levels of depression and anxiety, and to examine how buffers (optimism and coping) influence distress reported by carcinoid patients and caregivers -- a cross section of patients with carcinoid disease and caregivers was recruited to complete questionnaires. An announcement describing the study (with a link to the survey) was posted on several on-line carcinoid support groups. Patients and caregivers were invited to participate. Participation required completing the on-line questionnaire at individuals’ convenience. An interactive consent form also required completion. The questionnaire contained scales for anxiety, depression, optimism, and coping skills. Responses were completely anonymous.

Because measures of depression, anxiety, and coping skills provide only general information on functioning, a third study objective was developed to capture aspects of psychological functioning unique to those affected by carcinoid disease using a ten question on-line written interview. Questions related primarily to the way in which the illness affected individual and family life. Participants were given the option of completing the same interview over the telephone rather than providing responses in written form.

RESULTS

Sample Description

The sample consisted of 300 respondents; 216 were carcinoid patients and 74 were caregivers. In only two cases were caregivers and patients related – in other words, the majority of caregivers reported on people they cared for who did not participate in this study themselves. Most caregivers were carcinoid patients’ spouses (65.8%), their sons or daughters (20.5%), their parents (8.2%) or other (4.1% -- for example, siblings).

The majority of respondents in both groups were Caucasian, with approximately 5% of respondents in each group of ethnic minority status. In the carcinoid patient group, 71.7% were female, and in the caregiver group, 79.5% were female. Carcinoid patients ranged in age from 30 to 80 years, with an average of 52.3 years. Age range in the caregiver group was similar, from 22 to 79 years, with an average age of 48.4. Carcinoid patients had been living with their diagnosis for an average of 6 years, ranging from 0-29 years; caregivers of carcinoid patients reported duration of diagnosis to be an average of 5.6 years, ranging from 0-20. Table 1 below presents information on education and marital status. Table 2 presents information on duration of symptoms before receiving diagnosis and location of primary tumor.

Table 1: Characteristics of the Sample

Table 2: Carcinoid Information

Notes: *The majority of patients diagnosed 0-11 months had no symptoms and were diagnosed during surgery for other concerns such as appendicitis, gall bladder surgery, or hysterectomy. ** Other location includes: thymus, ovary, heart.

Rates of Depression and Anxiety

To assess depressive and anxious symptoms, we included widely used measures, including the Center for Epidemiological Studies Depression Scale (CES-D), the State Anxiety Inventory (STAI), and the Hospital Anxiety and Depression Scales. These were selected because they are relatively brief, and they have a long history of use with chronic illness populations. In addition, their utility as screening measures for elevated anxious and depressive symptoms has been well established.

The CES-D scale has twenty items that assess the physical and cognitive symptoms associated with depression. The item, “I had trouble keeping my mind on what I was doing” is an example of a cognitive symptom, and “My sleep was restless” is an example of a physical symptom of depression. Because several of the CES-D items tap physical symptoms, it is important to keep in mind that responses may relate to disease symptoms and/or medication effects. For that reason, we also included the Hospital Depression Scale, which taps primarily cognitive symptoms. The STAI also taps cognitive and physical symptoms, whereas the Hospital Anxiety scale taps primarily cognitive symptoms.

In this report, we are providing results on the CES-D and the Hospital Anxiety and Depression Scales. (The scoring program we had for the STAI provided inaccurate information, which we are currently in the process of correcting.) For the CES-D, scores are divided into an “average” or “normal” range, meaning those individuals’ scores do not indicate serious concern, and an “elevated” range, meaning that further assessment should be pursued to determine whether treatment would be beneficial. The Hospital Anxiety and Depression Scales are divided into “normal,” “at-risk,” and “elevated” ranges. Normal and Elevated are defined the same way as with the CES-D. At-risk refers to individuals whose scores are higher than average, but lower than those in the “elevated” group. These individuals may be at risk for developing difficulties, and should continue monitoring symptoms should they become problematic. Below scores for each group are graphed by the specific measure.

As you can see, the percentages of individuals scoring in the “elevated” range differ greatly between the CES-D and the Hospital Depression Scale. We suspect that the main reason for this difference is that the two scales actually measure different things. The CES-D items tap cognitive and physical symptoms, some of which may reflect disease and/or medication related effects. The CES-D items also reflect general mood symptoms, such as “I feel blue.” The Hospital Depression scale items appear to tap issues related to loss of interest in daily activities, which is somewhat different from what the CES-D measures. In any case, each of these measures has an established history of usefulness in screening for depressive symptoms in chronic illness patients, and information from both these scales provides insight into functioning in the carcinoid population.

How Other Factors Relate to Depression and Anxiety

A number of factors have both been found to relate to depression and anxiety. For example, age is a factor, with higher risk occurring in early and late adulthood; another factor is sex, with females at higher risk; and marital status, with non married males at higher risk. However, demographic variables are only part of the picture: how individuals cope with daily stressors is also highly important in their overall psychological well-being.

Using a statistical technique called multiple regression, we tested how demographic variables – sex, age, and education, and psychological variables – optimism and coping -- related to anxiety and depression. We selected coping strategies that are widely used and have been previously found to relate to adjustment in other cancer patient populations. Those strategies included: active problem-solving coping style, use of social support for practical and emotional reasons, use of distraction (such as turning to work or other activities to avoid a stressor), use of religion, and use of denial.

The multiple regression technique allows us to examine not only which of these factors relate to adjustment, but we can also evaluate the relative importance of each factor. The information we are providing here is meant to give you a general overview of these results; detail on the statistical procedures we used and results from the analyses will be available in the formal reports we prepare for publication. Below, Table 3 summarizes factors, numbered in order of importance, that had statistically significant relationships with depression and anxiety.

Table 3: Factors Associated with Depression and Anxiety

Notes: * The number in parentheses indicate the relative importance of each variable in its relationship to depressive or anxious symptoms.

The results above may or may not reflect your individual experience. Said another way, how you respond individually – for example, by using your social support network as a way of coping – may help you feel less anxious and less depressed, even though our results do not indicate that for the group as a whole. These results reflect what appears to be happening for a large number of patients in general, and in the process of summarizing results for an entire group, there is the risk that important individual experiences may get subsumed by the majority. In interpreting our data for the sample as a whole, the analyses indicate that younger patients appear to be at higher risk for depression, and that higher levels of education appear to serve as a buffer against anxious and depressed feelings, although these results were more consistent for patients than for caregivers.

Because age and education are not factors most adults can readily change, we are more interested in the factors that adults can more easily modify, such as the attitude we adopt and the specific ways we cope. Within that context, our results indicate that low use of denial was the strongest factor relating to lower anxiety and depression for both patients and caregivers. The “denial” coping strategy includes the act of self-blame and self-criticism (e.g., “I’ve been blaming myself for things that happened”) as well as an avoidance component (e.g., “I’ve been saying to myself, ‘this isn’t real’”). The next strongest factor associated with anxiety and depression was optimism: both patients and caregivers who reported high levels of positive feelings and expectations that more good than bad things would happen to them also had the lowest levels of anxiety and depression. Low use of distraction, for example, turning to work or other activities to avoid stressful things, related to lower anxiety for both patients and caregivers, and lower depression in caregivers only. Higher active, problem-solving coping related to lower anxiety in caregivers.

We found it curious that neither social support nor religion was significantly associated with depression or anxiety for either group. However, in previous research with other cancer patient samples, these factors do not always relate to anxiety and depression. In looking closer at our data, it appeared that most individuals reported a high level of social support, so low variability on this factor may have accounted for the lack of effect. We will continue exploring the data for greater understanding on why active problem-solving and religion did not more consistently relate to depression and anxiety.

CONCLUSIONS

We view this report as our first step in the process of analyzing and giving voice to these data. Patients and caregivers provided us a wealth of information that we expect will be valued by patient and professional communities. At present, we view the most important implications for patients to be the following.

1. A significant proportion of individuals in both patient and caregiver groups reported elevated depressive and anxious symptoms.

As patients and caregivers are acutely aware, chronic illness is more than a disease; it affects a whole person and a family. Risk for increased distress logically follows, which is certainly reflected in our results. Although the surveys we used can be influenced by disease related symptoms such as fatigue, disturbed sleep patterns, and medication effects, they are useful as screening tools in indicating who may be at risk for elevated, prolonged distress.

Because this study was conducted anonymously and we have no way of tracking from whom specific data originated, we do urge you to talk with your health care provider about appropriate treatment if you feel your mood symptoms impair your occupational, social, or family life OR if the feelings persist for more than a month.

2. Individuals who report engaging in less denial (self-blame, avoidance) and who have higher optimism have lower levels of depression and anxiety.

The most consistent factor in depression and anxiety were two variables reflecting how individuals view their situation and the distress they experience. Low self blame and self-criticism in particular appear to be critical in warding off depression and anxiety. Similarly, high optimism appears to be very useful in buffering anxious and depressive symptoms. If you feel you suffer from elevated and/or prolonged anxious or depressive symptoms, we again urge you to discuss your feelings with your health care provider or a mental health professional. A number of highly effective treatments for depression help individuals learn more positive ways of viewing their situations, including helping them reduce their own self-criticism.

Conclusion

As mentioned above, your participation in this study provided a wealth of information that we hope will be valuable for you and for the medical community. Because research is a process of gradual discovery, we will continue examining these data over the next few months, with a specific focus on:

1) Preparing this information formally for publication in medical and psychological journals;

2) Examining the effect of diagnosis (including number of years diagnosed and the amount of time elapsed before diagnosis) on depression and anxiety;

3) Formally examining differences in functioning between carcinoid patients and caregivers;

4) Reviewing qualitative data for important themes.

Regarding the last issue (reviewing qualitative data), we were overwhelmed at the amount of written information provided to us by both patients and caregivers. In fact, when printed, the writing totals over 400 pages! We are certain that these responses contain a great deal of information not evident in the above information, and we look forward to keeping you informed as this process unfolds.

Please feel free to contact us (Dr. Soliday, Dr. Smith) if you have questions or comments on the above. Thank you again for your participation.

ACKNOWLEDGEMENTS: The authors gratefully acknowledge the Carcinoid Cancer Foundation, who provided funding for study, and we also thank the participants.