Psychosomatics 39:437-445, October 1998
© 1998 The Academy of Psychiatric Medicine
Quality of Life and Pain in Patients With Recurrent Breast and Gynecologic Cancer
Teresa A. Rummans, M.D.,
Marlene Frost, Ph.D.,
Vera J. Suman, Ph.D.,
Michelle Taylor, Ph.D.,
Paul Novotny, M.S.,
Tim Gendron, M.D.,
Ruth Johnson, M.D.,
Lynn Hartmann, M.D.,
Ann Marie Dose, R.N., and
Roger W. Evans, Ph.D.
Received July 22, 1997; revised December 16, 1997; accepted January 8, 1998. From the Department of Psychiatry and Psychology, Department of Oncology, Section of Biostatistics, Department of Internal Medicine, and Department of Health Services Evaluation, Mayo Medical School and Clinic, Rochester, MN. Address reprint requests to Dr. Rummans, Mayo Clinic, 200 First Street, SW, Desk West–11 A, Rochester, MN 55905.
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ABSTRACT
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Pain is a central factor affecting quality of life for the cancer patient. This descriptive study was designed to explore the relationship between pain and several factors affecting quality of life. The factors explored included physical and social functioning, emotional health, and spiritual commitment in women with recurrent breast or gynecologic cancer. Pain frequency, amount, and interference with activities were found to correlate more strongly with objective measures of quality of life (i.e., physical and social functioning) than subjective measures (i.e., psychological or spiritual dimensions).
Key Words: Cancer • Obstetrics • Gynecology • Women • Quality of Life • Pain
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INTRODUCTION
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Quality of life is a difficult concept to define and measure. Often quality-of-life outcomes are confused with their determinants. Evans et al.,1–3 among others, have tried to distinguish between objective and subjective indicators of quality of life. Objective measures of quality often include the assessment of functional status, whereas one's overall sense of well-being represents a patient's subjective impression of his/her life experience. This distinction can be important because one's objective quality of life (e.g., functional limitations) may not correlate with one's subjective experience (e.g., psychological well-being). Efforts to improve one's quality of life may be directed at improving one's objective status such as level of physical functioning or level of social functioning. Efforts can also be focused on adjusting the person's subjective psychological, emotional, and spiritual state to cope more effectively with one's life circumstances. Pain can affect both one's objective and subjective state.4
Many clinicians and researchers have believed that pain is one of the most important factors affecting quality of life in the cancer patient. Kelsen et al.5 found that in patients with newly diagnosed pancreatic cancer, pain adversely affected one's psychological state, level of functioning, and overall quality of life. Arathuzik6 reported that in women with metastatic breast cancer experiencing pain, certain concerns (such as physical limitations and social isolation) contributed greatly to their entire pain experience. Padilla et al.7 evaluated 41 cancer patients with chronic pain and found physical functioning impacted greatly on one's sense of well-being and overall quality of life. Portenoy et al.8 reported that pain adversely affected mood, various aspects of functioning, and overall enjoyment of life in patients with ovarian cancer. Consequently, if one is going to focus on improving quality of life, one must look at pain and the factors affecting pain.
Pain is a multidimensional concept. The American Pain Society9 defines pain as an "unpleasant sensory and emotional experience associated with actual or potential tissue damage." As a result, pain involves cognitive, motivational, behavioral, affective, and physical phenomena. This implies that many of the same elements that affect other dimensions of quality of life may affect a person's experience with pain.
However, the relationship between these variables has not been clearly delineated. Although studies report an interdependence among the various dimensions of quality of life and all its dimensions with pain, there are other studies that do not find this relationship. In a study of 60 individuals with chronic illness, Pollock,10 using the Psychosocial Adjustment Illness Questionnaire, reported physiological and psychological adaptation to be separate domains (r=.21,P<0.05). A study11 of 45 individuals participating in a cardiac rehabilitation program did not find a significant correlation between physiological and psychological dimensions of the Sickness Impact Profile. An assessment of these associations may permit a more focused intervention to alleviate pain and suffering. Consequently, this study explores the relationship between pain and other independent predictors of quality of life (i.e., physical, emotional, and spiritual factors) in women with recurrent breast and gynecologic cancer.
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METHODS
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Subjects
In 1994, a prospective study was conducted of women 18 years or older with breast or gynecologic cancer seeking treatment at a large, tertiary medical center in the Midwest. The purpose of the larger study was to examine the psychosocial needs of these women. All women coming for care were recruited. They were categorized into four groups: 1) newly diagnosed, 2) adjuvant therapy, 3) stable disease, and 4) recurrent disease. This article focuses on the women recruited with recurrent cancer, that is, those who experienced a period of stability and then recurred. Study participants included 64 women with recurrent breast cancer and 53 with recurrent gynecologic cancer. The types of gynecologic cancer included ovarian (53%), endometrial/utero (30%), cervical (8%), and other gynecologic cancers (9%).
Procedure
Following approval by the Institutional Review Board of the protocol, potential subjects with a history of recurrent breast or gynecologic cancer were identified at the time of their appointment in our outpatient oncology clinic during the 3-month study period. All women 18 years or older with one of these conditions were approached. Only inability to speak and read English or severe cognitive impairment excluded patients from this study.
After screening the appointment cards for eligibility, a research assistant approached the patient at the time of a clinic visit, explained the study's purpose, and asked if the woman would participate. Patients were informed that refusal to participate would not affect their ongoing care. During the 3-month study period, 151 recurrent patients were eligible for the study. Thirty-four (23%) declined to participate.
Study participation involved the completion of several questionnaires that contained demographic information, questions about specific concerns of the individual, and intrinsic faith and extrinsic religious practices. The questionnaires were the Brief Symptom Inventory (BSI),12–15 Cancer Rehabilitation Evaluation System–Short Form (CARES-SF),16–17 and the Health Status Questionnaire (HSQ).18–20 The women were asked to complete the questionnaires during their clinic visit. If it was not possible to complete the questionnaires at that time, the women were provided with a self-addressed, stamped envelope to return at their convenience.
Frequency of pain, amount of pain, and interference of pain in one's life were measured by using three specific questions obtained from the CARES-SF and HSQ (Table 1).
Demographic data gathered on these individuals included age, race, marital status, years of education, and household annual income. Specific questions addressed relationships with family, ability to function at home or work, finances, and spiritual/religious beliefs and practices.
Seven questions regarding intrinsic faith and two questions concerning extrinsic participation in a religious community were asked. Responses on each question were rated on a scale of 1–5, with a high score indicating a greater degree of spiritual/religious involvement. A composite score for intrinsic faith was created by adding the ratings from its seven corresponding questions. A composite score for extrinsic participation was constructed in the same manner (Table 2).
The BSI, a 53-item self-report symptom inventory, measures psychological symptom patterns of psychiatric and medical patients.12 The scale is scored to represent nine symptom dimensions and three global indices of distress. The nine symptom dimensions include somatization, obsessive-compulsive behavior, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation, and psychoticism. The three global indices of distress are the Global Severity Index, reflecting the level or depth of the disorder; Positive Symptom Distress Index, representing symptom intensity; and Positive Symptom Total, reflecting the number of patient-reported symptoms. Raw scores were standardized to that of a population of nonmental health patients, with a mean of 50 and a standard deviation (SD) of 10. Low scores reflect fewer problems. The BSI has demonstrated internal consistency, test-retest reliability, and convergent and predictive validity.12–15
The CARES-SF was developed to measure rehabilitative needs, specifically the problems encountered by cancer patients on a daily basis as they live with the disease and its treatment.16–17 This scale consists of 59 items with a global scale and 5 subscales: physical, psychosocial, medical interaction, marital, and sexual. Raw scores were standardized to a population of female cancer patients, with a mean of 50 and a SD of 10. Low scores reflect fewer problems. The CARES-SF has demonstrated internal consistency, test-retest reliability, and convergent validity.16,17
The 39-item HSQ consists of 11 subscales: physical functioning, role physical, role emotional, social functioning, bodily pain, general health, mental health, vitality, major depression, risk of dysthymia, and major depression imposed on dysthymia.18–20 Raw scores were standardized to an age-specific population of females, with a mean of 0 and a SD of 1. High scores reflect fewer problems. The HSQ has demonstrated internal consistency and convergent validity.18–20
Analysis
To explore the relationship between pain and other quality-of-life variables, the frequency, amount, and interference of pain were correlated with the subscales of our spiritual/religious index, the BSI, CARES-SF, and HSQ by using Spearman's rank-correlation coefficients. The subscales of the CARES-SF and HSQ, which included one of the specific pain questions, were not included in the analysis. With the number of comparisons being made, a P-value less than or equal to 0.001 was considered significant. The Wilcoxon rank-sum test was used to assess whether any of the pain subscale scores differed with respect to site of primary disease.
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RESULTS
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The mean age of the recurrent breast cancer patients at the time of survey completion was 58.7 years (SD=13.1) and that of the recurrent gynecologic cancer patients was 60.3 years (SD=12.0). The median time from primary diagnosis was 7.3 years (range: 8 months–25.9 years) for the breast cancer patients and 3.1 years (range: 2.6 months–23.5 years) for the gynecologic patients. Nearly three-quarters (74%) of these patients were married at the time they completed the survey, 86% had at least a high school education, and 53% had an annual household income equal to or above $25,000.
Sixty-three of the breast cancer patients and 51 of the gynecologic cancer patients completed the pain subscales. Seventy percent of the responding breast cancer patients and 63% of the responding gynecologic cancer patients reported that they experience at least a little pain during the preceding month (Figure 1). In the 4 weeks preceding the survey, 51% of those responding stated that they had a mild-to-moderate amount of pain (Figure 2). Sixty-two percent of those responding women, as shown in Figure 3, stated that their pain interfered with their ability to function. There was no evidence to suggest that frequency of pain (P=0.356), amount of pain (P=0.442) or interference of pain (P=0.463) differed by tumor type.
The frequency, amount, and interference of pain correlated moderately with the subscales on the CARES-SF and HSQ that measured physical and social functioning (Table 3). Surprisingly, there were only weak correlations with the emotional, psychosocial, and mental health subscales of the CARES-SF and HSQ (Table 4). No significant correlations were found between the frequency, amount, and interference of pain and depression and anxiety subscales of BSI, role-emotional on HSQ, sexual, marital, or medical interaction subscore of CARES, and the spiritual intrinsic or extrinsic subscales.
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DISCUSSION
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Pain is a prominent part of the lives of patients with recurrent cancer. In this descriptive study of women with recurrent breast and gynecologic cancer who were able to receive care in our outpatient oncology clinic, pain was reported frequently and found to interfere with their quality of life.
The impact of pain on quality of life is substantial but less well defined. It has been assumed that pain affects all of the dimensions of quality of life, which include physical, social, psychological, and spiritual domains. The extent to which dimensions of the quality of life affect, and conversely are affected by, pain is complex and difficult to discern.
In our study, half of the women with recurrent breast or gynecologic cancer experienced mild-to-moderate pain. A mild-to-moderate level of pain correlated with the physical and social dimensions of these individuals' lives. The correlations were not as strong between pain and psychiatric and spiritual dimensions. While it may seem counterintuitive that psychological and spiritual factors do not correlate with pain more significantly, other studies involving different patient populations have found that the objective measures of quality of life (physical function) do not always correlate well with subjective measures of quality of life (psychological state).10,11
Frequency and amount of pain in this sample was correlated with physical and social functioning. Clearly, pain limits one's ability to pursue physical activities and exercise which, in turn, impacts one's sense of physical well-being. At the same time, physical symptoms of fatigue and weakness can impact one's tolerance to pain.
Often patients tolerate a tremendous amount of pain if provided the necessary social support that involves physicians, nurses, other caregivers, family, and friends. When this is absent or minimally present, the patient may feel isolated. Pain levels often increase. As the pain increases, a patient's sense of social well-being deteriorates. During this time, the problem may be further complicated by the patient's inability to work. Social support from colleagues diminishes. Friends withdraw when the person is no longer able to participate in previously shared activities. Physical affection and intimacy from family members is often withheld for fear of inflicting further pain on the person. The loss of external comfort may contribute to further magnification of pain. This study found a significant correlation between social functioning and pain levels.
Psychological symptoms of depression and anxiety were not highly correlated with pain levels in this group of women. This finding may be related to the fact that the majority of these women were experiencing mild-to-moderate pain, with none experiencing severe, incapacitating pain. It may be that as pain increases (i.e., goes from mild to severe), anxiety and depression also increase. When these psychological symptoms develop, pain may intensify, producing a vicious cycle. Indeed other researchers21–24 have shown a clear relationship between physical pain and psychological distress. Researchers24 using similar instruments (i.e., BSI) for cancer patients, have found positive correlations between pain and many of the BSI subscales, including anxiety and depression.
Glover et al.21 tried to determine if there are differences in mood in cancer patients with and without pain. Those investigators discovered that as pain developed, psychological distress increased and total mood disturbance rose. Although a relationship between mood and pain intensity is suggested, the specific nature of their relationship of pain levels to anxiety and depression has not been completely defined. When pain is associated with anxiety and depression, the treatment of either anxiety or depression can decrease the level of pain that is perceived by the individual person.
Spirituality is a relatively undefined concept, but its nature and impact on health and illness has become the focus of increased interest and study among health care providers. Unfortunately, the assessment of spirituality is still in its infancy. Spirituality may include intrinsic spiritual beliefs and value that provide comfort and strength or may produce feelings of shame and guilt. Similarly, extrinsic religious participation displayed by outward manifestations of the individual's beliefs through prayer, meditation, and church or other religious organizational involvement may exert complex effects on an individual. On one hand, these activities can provide an individual with a calming, soothing influence and a warm, caring external support network; on the other hand, these activities can leave a patient feeling abandoned or guilty if they are unable to cure themselves or live up to the expectations of others.25 At this time, our current measures do not truly capture the impact of these beliefs and practices on other areas of our well-being. Thus, it is difficult to know if the findings are due to a true lack of correlation or the inability of the questions posed to capture the essence of spirituality.
We have found that individuals with mild-to-moderate pain are affected significantly by their increasing physical limitations and their diminishing social activities and contacts. Interventions to maintain both of these domains as long as possible may have a positive impact on the individual's overall quality of life. As the pain increases, the level of suffering increases and other dimensions of a person's life may be affected. Both the psychological and spiritual dimension may be more pronounced. Interventions to relieve psychological distress and to support a person's spiritual beliefs and religious activities may improve a patient's quality of life, but further studies of individuals with severe pain are needed to confirm this theory.
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M. van den Beuken-van Everdingen, J. de Rijke, A. Kessels, H. Schouten, M van Kleef, and J Patijn
Prevalence of pain in patients with cancer: a systematic review of the past 40 years
Ann. Onc.,
September 1, 2007;
18(9):
1437 - 1449.
[Abstract]
[Full Text]
[PDF]
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Pain and Quality of Life for Cancer Patients
Journal Watch Women's Health,
November 1, 1998;
1998(1101):
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[Full Text]
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ABSTRACT
INTRODUCTION
