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Health-Related Quality of Life in Female Long-Term Colorectal Cancer Survivors

^a University of Wisconsin Comprehensive Cancer Center, Madison, Wisconsin, USA; ^b Department of Population Health Sciences, University of Wisconsin, Madison, Wisconsin, USA; ^c Fred Hutchinson Cancer Research Center, Seattle, Washington, USA

Correspondence: A. Trentham-Dietz, Ph.D., 610 Walnut Street, WARF Room 701, Madison, Wisconsin 53726, USA. Telephone: 608-265-4175; Fax: 608-265-5330; e-mail: trentham{at}wisc.edu

	LEARNING OBJECTIVES

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After completing this course, the reader will be able to:

1. Appreciate that female long-term colorectal cancer survivors commonly achieve quality of life comparable with that of similarly aged women without a personal history of cancer.
   
2. Identify age and comorbid conditions, particularly greater body mass, as two strong factors related to quality of life in female long-term colorectal cancer survivors.
   
3. Recognize that colorectal cancer can be associated with long-term levels of both physical and mental health.
   

	ABSTRACT

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Although the number of women who survive treatment for colorectal cancer is growing, little is known about the quality of life of long-term survivors. The purpose of analyses presented in this paper is to describe the overall health-related quality of life of female long-term colorectal cancer survivors and the factors that may modify their levels of quality of life. A population-based sample of 726 Wisconsin women diagnosed with colorectal cancer from 1990–1991 was recontacted. Of the 443 women alive in 1999, 307 (69%) completed a follow-up questionnaire including the Medical Outcomes Study Short-Form 36 Health Status Survey, which is comprised of 36 items that generate nine domain scale scores and two summary scores: the Physical Component Summary score and the Mental Component Summary score. The mean follow-up was 9 years (range 7–11), and the mean age at follow-up was 72 years (range 43–85). The mean Physical Component Summary score was lower for participants with greater ages, greater numbers of comorbidities, and greater body masses at the time of follow-up. The mean Mental Component Summary score also was lower for participants with greater numbers of comorbidities. Differences associated with degree of comorbidity were observed for all eight domain scales. Female long-term survivors of colorectal cancer appear to report health-related quality of life comparable with that of similarly aged women in the general population. These data suggest that, over the long term, factors attributable to aging, body weight, and chronic medical conditions play more dominant roles in determining physical and mental health than factors related to the initial colorectal cancer diagnosis.

Key Words. Quality of life • Colorectal neoplasms • Survivorship • Comorbidity • Body mass

	INTRODUCTION

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The population of colorectal cancer survivors is a growing one. For females diagnosed between 1973 and 1999 in the U.S., the mortality rate of colorectal cancer decreased by 29% and the 5-year relative survival rate increased by 22% [1]. The substantial decrease in mortality is most likely due to earlier detection of tumors through preventive screening [2, 3] and to improvements in therapy [4]. When diagnosed in an early, localized stage, colorectal cancer has a 5-year relative survival rate of 90% [1].

As more patients are surviving longer after a diagnosis of colorectal cancer—and many other cancers—health-related quality of life issues are becoming more important [5–9]. Much research on quality of life in cancer patients has focused on individuals receiving treatment [10–12], such as those enrolled in clinical trials [13–20] or those receiving end-of-life palliative care [21, 22]. But since selected patient groups may not reflect the general experiences of most cancer survivors, population-based studies are needed. Evidence that the needs of long-term cancer survivors are different from the needs of individuals who have recently been diagnosed [23, 24] and that generalizations across different types of cancer may not be appropriate [25] further speak to the need for population-based studies. To address these gaps in knowledge, we conducted a population-based study, which contributes to the literature on quality of life among older adults with chronic disease and addresses the lack of knowledge about quality of life among female long-term colorectal cancer survivors.

	METHODS

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Case Identification and Contact
From 1990–1991, all women in Wisconsin diagnosed with invasive cancer of the colon or rectum were reported to the statewide tumor registry, the source from which our participants were recruited [26]. Information was available from the tumor registry on cancer site, histology, extent of disease, and follow-up physician. According to an institutionally approved protocol, the physician of record for each eligible case was contacted by mail to obtain permission to contact the patient. Eligibility was limited to cases with listed telephone numbers. Of the 1,061 identified cases, physicians refused contact for 108 cases, 185 were deceased, 40 refused to participate, and two were unable to be located. Thus, the case group (n = 726, response rate = 68%) included 502 women with diagnoses of colon cancer and 224 women with diagnoses of rectal cancer. Of these, 98% had histological confirmation of invasive large bowel cancer.

Participants completed a 25-minute structured telephone interview at baseline, approximately 1 year after their cancer diagnosis. The interview elicited information on known or suspected risk factors for large bowel cancer. Participants also completed a mailed self-administered modified food frequency questionnaire [27]. Quality of life was not assessed in the baseline measure since the study at that time aimed to evaluate risk factors for incidence of disease [26].

At follow-up, names, dates of birth, and social security numbers of cases were linked with Wisconsin state death certificates and the Social Security Death Index [28]. Of the 726 cases who participated in the baseline interview, 283 (39%) were deceased by December 1999. Among the 443 survivors, 66 (15%) did not participate and 70 (16%) could not be located. A total of 307 (69%) completed our follow-up questionnaire between April and December 1999, 273 by mail and 34 by telephone.

Follow-Up Questionnaire
The follow-up questionnaire consisted of the Medical Outcomes Study Short-Form 36 Health Status Survey (SF-36) [29, 30], questions regarding known and suspected colorectal cancer risk factors, and questions pertaining to the original colorectal cancer diagnosis and treatment. Questions regarding colorectal cancer risk factors included: family history of colorectal cancer; personal history of medical and cancer screening; reproductive experiences; age-specific use of tobacco, alcohol, and exogenous hormones; and current selected dietary intake, additional medical conditions, height, and weight. Questions pertaining to participants’ colorectal cancer included type of treatment and cancer recurrence. Demographics, including race/ethnicity and education, were obtained from the baseline questionnaire. Participants returning mailed surveys were asked all items, whereas those interviewed by telephone were asked all questions except items 3–36 from the SF-36; due to concerns regarding the length of the interview, only the first two items from the SF-36 instrument were queried over the telephone.

The SF-36 assesses health-related quality of life in nine domain scales through 36 items, with each item used in scoring only one scale. Eight multiple-item domain scales are scored separately from 0 (lowest level of functioning) to 100 (highest level); the scales evaluate: A) limitations in physical activities due to health problems (physical functioning); B) limitations in social activities due to physical or emotional problems (social functioning); C) limitations in usual role activities because of physical health problems (role-physical); D) bodily pain; E) general mental health; F) limitations in usual role activities due to emotional problems (role-emotional); G) vitality, and H) general health perceptions. These eight domain scales are combined to form two summary scores, the Mental Component Summary (MCS) scale and the Physical Component Summary (PCS) scale [30]. The MCS and PCS scores are standardized such that, for example, scores above 50 reflect better emotional and physical functioning than those reported by members of the general population. A difference of one point for the standardized scores is one-tenth of a standard deviation (SD). One five-level item assesses perceived change in health during the past year [29]. The SF-36 instrument has been normed in the general U.S. population [29, 30], and multiple indicators of validity have been demonstrated [29–32]; acceptable internal consistency [31, 33, 34] and high test-retest reliability [34] have also been documented.

Analysis
Calculations of SF-36 scale scores were performed using the scale scoring exercise (second edition) in SAS (SAS Institute Inc.; Cary, NC) provided by the Medical Outcomes Trust. Least squares means for SF-36 scale scores and p values from F-tests were calculated using multivariate analysis of variance including covariates for age and education. The analysis was limited to the 259 out of 307 participants (84%) with scores for the SF-36 MCS and PCS scales. Due to time limitations, the 34 participants interviewed by telephone were not asked all SF-36 items, and items were incomplete for 14 others. Body mass index was calculated as current weight (kg)/current height (m)².

	RESULTS

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Follow-up occurred an average of 9 years (range 7–11) after participants’ initial colorectal cancer diagnoses. The mean age of participants at follow-up was 72 years (range 43–85). Participants were well educated; only 19% did not report a high school degree. The majority of participants were Caucasian (98%), reflecting the underlying racial homogeneity of all female colorectal cancer cases in Wisconsin.

Mean values for all SF-36 scales were comparable with published age-specific norms for the general population (Table 1). As expected, a substantial proportion of participants reported the highest possible ("ceiling") value for the role-physical (46%), social functioning (47%), and role-emotional (60%) scales. When asked to rate their health in general now compared with 1 year ago (change in health scale), 6.7% of participants answered that it was much better, 11.8% reported that it was somewhat better, 70.1% said that it was about the same, 9.8% rated it as somewhat worse, and 1.6% said their general health was much worse.

View larger version (21K): [in this window] [in a new window]   Figure 1. Mean values of SF-36 domain scales by number of comorbidities for 259 female long-term colorectal cancer survivors, Wisconsin 1990–1999. Means adjusted for age and education.

View larger version (21K): [in this window] [in a new window]   Figure 2. Mean values of SF-36 domain scales by body mass index for 259 female long-term colorectal cancer survivors, Wisconsin 1990–1999. Means adjusted for age and education.

	DISCUSSION

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In this study of female long-term colorectal cancer survivors, the presence of health problems other than cancer was strongly associated with all measured domains of both mental and physical health-related quality of life. Age and body mass were also associated with the degree to which cancer survivors were able to participate in physical activities—such as walking, carrying groceries, routine self-care—and the extent to which they limited activities or time involved in their "roles" (e.g., employee, spouse). Disease-specific factors, such as stage of cancer at diagnosis and surgical treatment with colostomy, were not strongly associated with current health status.

Little quality of life research has focused on female long-term survivors of colorectal cancer. A study of 27 long-term, 33 intermediate-term, and 57 short-term survivors of colon cancer (34% female) concluded that quality of life, and particularly its psychosocial domain, tended to improve as length of survival increased [35]. A second study of 110 cases, an average 45 months after diagnosis (41% female), found that few survivors (<5%) were dissatisfied with their emotional well-being, partnership, family, and appearance; more survivors (10%-26%) were dissatisfied with their physical performance, intellectual function, financial situation, and sexual function [36]. Ramsey and colleagues reported that the negative impact of colorectal cancer was greatest within the first 3 years of diagnosis [37]. Also in agreement with our study, Ramsey et al. reported that quality of life did not vary significantly according to initial stage at diagnosis, but that noncancer comorbidity was associated with quality of life in long-term colorectal cancer survivors [7, 37].

The largest study to date of quality of life in long-term colorectal cancer survivors was conducted in Italy [38]. Colorectal cancer survivors (82% female) who participated in two randomized clinical trials were randomly selected to receive mailed questionnaires including either the SF-36 (n = 197) or the European Organization for the Research and Treatment of Cancer QLQ-C30 questionnaire (n = 199) [39]. Results concurred with our findings that quality of life scores were similar to published population norms, but suggested that scores for females were generally lower than for males. Other studies of female colorectal cancer patients did not include long-term survivors [11, 40, 41] or assessed too few cases to analyze female colorectal cases separately from males or from survivors of other types of cancer [42].

Although stage at diagnosis and subsequent treatment are strongly related to the length of survival after a colorectal cancer diagnosis [1], these factors did not have a strong association with quality of life among the long-term survivors in this study. Treatment for localized disease is generally minimal; only about 15% of all colorectal cancer patients require a permanent ostomy [9]. In this study, 17% of participants reported ostomy. Most study participants, who were diagnosed at an early stage, probably resumed their regular lifestyle once treatment was completed. Participants diagnosed with more advanced disease, however, probably had to adapt to long-term stomal management. Previous research has shown that quality of life among colostomy recipients may be decreased due to feelings of stigma, decreased sexual activity, bowel dysfunction, fears of odor and leakage, and limitations in social activities [15, 43]. Many of these impairments are also reported by colorectal cancer survivors without a stoma, although less often [43]. Female survivors, perhaps more so than male survivors, may suffer psychological insecurities regarding body image [35, 43].

A strength of this study is that the participants were drawn from the general population of women diagnosed with colorectal cancer in Wisconsin. The response rate was high for follow-up studies of this type (69%). It is possible, though, that the 16% of survivors who were not located had a different quality of life than those who participated in this study. However, a proportion of those women were most likely recently deceased and not yet included in death certificate databases. While we were unable to evaluate the quality of life of women lost to follow-up and women who refused to participate, in general, the nonparticipants were similar to the participants in terms of stage of disease at diagnosis, site of disease, and other risk factors; nonrespondents were, however, on average, older than respondents. The concern is that individuals missing from a database are absent due to health-related reasons, resulting in an upward bias in the quality of life of those surveyed.

Another possible limitation of this analysis is the minimal SF-36 data for survivors providing responses by telephone interviews. However, the distribution of responses to a global health question was reassuringly similar for the 48 women with incomplete SF-36 information, 38% of whom described their current health as excellent or very good, as for the 259 women included in the complete analysis, 46% of whom gave those responses (p = 0.3). A global health score, however, reflects only general subjective well-being and does not capture differences in the various dimensions of subjective well-being among different subgroups of participants [40].

Several potentially important aspects of cancer survivorship were not assessed. We did not specifically evaluate late effects of cancer treatment. Little is known regarding the long-term effects of radiotherapy and chemotherapy and their impacts on quality of life among long-term survivors [44]. Other factors such as sexual functioning, problems with employment, and changes in insurance coverage were not evaluated in this study. Difficulties with these factors are experienced by many cancer survivors [44–46]. Among our study participants, these difficulties may be indirectly reflected in reports of anxiety or depression, measured as a single item in the comorbidity measure and as multiple items in the SF-36 domain scales and reported by 19% of the individuals in our study. Had we collected longitudinal data with the SF-36, we might have detected meaningful changes in scores. For example, Ware et al. [29] reported that a decrease over time of three points in the general mental health scale of the SF-36 has been shown to be roughly equivalent to the psychological distress caused by losing one’s job. Furthermore, baseline quality of life measures may have predicted long-term quality of life. Maisey et al. [20] demonstrated that baseline quality of life strongly predicted survival one year after diagnosis of advanced colorectal cancer; further research into the relationships among quality of life at the time of diagnosis, long-term survival, and long-term health status would be valuable.

In summary, female survivors of colorectal cancer appear to have health-related quality of life comparable with that of similarly aged women in the general population. However, colorectal cancer survivors with ostomies or who experience recurrences may report a decrement in the physical domain of quality of life. Our study demonstrates that, in general, the factor most strongly associated with quality of life in female, long-term colorectal cancer survivors is not the original diagnosis with colorectal cancer, but other medical conditions that exist along with colorectal cancer. These findings should be of interest to women, physicians, and others concerned about quality of life among the growing population of female long-term colorectal cancer survivors. Female patients dealing with a new diagnosis of colorectal cancer may be encouraged to hear evidence that their long-term quality of life may be comparable with similarly aged women who have not experienced a cancer diagnosis. Physicians may also want to emphasize to their patients that prevention and management of other major chronic conditions, such as obesity, hypertension, depression, and osteoporosis, are important. Finally, researchers conducting studies—especially population-based, non-randomized studies—of issues related to cancer survivorship need to account for the impact of health conditions other than cancer when evaluating quality of life in this population.

	ADDITIONAL READING

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Practitioners seeking more background information may wish to review selected works by Ramsey et al. [7, 37] and Mosconi et al. [38], for studies of long-term colorectal cancer survivors, or works by Gotay et al. [46], for a more general discussion of quality of life issues in oncology populations.

	ACKNOWLEDGMENT

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We wish to thank Drs. John Niederhuber, Barry Storer, and Scott Ramsey for their advice and support of this project. We also appreciate the contributions of Janel Heine, Linda Haskins, Betty Granda, Lisa Sieczkowski, Elizabeth Mannering, Emogene Dodsworth, Jerry Phipps, and Mary Pankratz.

This work was supported by Public Health Service grant CA78977 from the National Cancer Institute, National Institutes of Health, Department of Health and Human Services.

	REFERENCES

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This Article Abstract Full Text (PDF) eLetters: Submit a response to this article Purchase Article View Shopping Cart Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Citation Map Services E-mail this article link to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Reprints/Permissions Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Trentham-Dietz, A. Articles by Newcomb, P.A. Search for Related Content PubMed PubMed Citation Articles by Trentham-Dietz, A. Articles by Newcomb, P.A.