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Using the Cancer Rehabilitation Questionnaire in Patients with Colorectal Cancer
This article describes the development and testing of the Cancer Rehabilitation Questionnaire (CRQ) in patients with colorectal cancer. A descriptive, correlational survey was conducted in a sample of patients with colon or rectal cancer who received care at an outpatient cancer clinic at a large, northeastern U.S. academic medical center. Patients were identified from the Tumor Registry (N = 327) and received a mailed questionnaire. One hundred and three patients with colorectal cancer completed the demographic questionnaire, the CRQ developed by the investigators, and the Quality of Life Index (QLI). Significant differences were found between individuals with colon cancer and individuals with rectal cancer on the total CRQ (p < .005) and the physical, future orientation, and role-relationship subscales. For the QLI, significantly lower scores were reported on the family subscale for patients with rectal cancer in comparison with those with colon cancer. More attention to rehabilitation issues and quality of life is required across the trajectory of the cancer experience. With the increasing incidence of colorectal cancer, nurses in rehabilitation practice must address the issues affecting patients with this disease as they progress from diagnosis to treatment and rehabilitation.
Colorectal cancer is currently a leading cause of mortality throughout the world. Based on data from the World Health Organization (2004), colon and rectal cancer is responsible for more than 600,000 deaths worldwide, thus representing a major public health burden. Currently, the National Cancer Institute (NCI) in the United States indicates that the overall 5-year survival rate for colorectal cancer is 63.4% (NCI, 2006a). Despite improved screening measures and treatment available in many countries, colorectal cancer is a leading cause of morbidity and mortality (NCI, 2006b). Because more people may survive colorectal cancer with increased screening in the 21st century, the emphasis on cancer rehabilitation (a process) and quality of life (QoL) (both a process and an outcome) is important. Surviving colorectal cancer requires an understanding of rehabilitation and QoL issues because research on the burden of colorectal cancer is limited. The present study adds to the literature on QoL and specific rehabilitation issues that affect patients living with colon cancer and those living with rectal cancer. These two types of cancer are different in terms of QoL and may provide unique rehabilitation issues, particularly because those with rectal cancer may have the added burden of living with a colostomy. Low rectal carcinomas may also be associated with additional symptoms (e.g., diarrhea and stool incontinence) related to bowel functioning.
Issues of rehabilitation and QoL have taken on greater significance for those affected by colorectal cancer. Recently, the National Cancer Policy Board and the Institute of Medicine commissioned a report on quality care for cancer survivors. Cancer rehabilitation and QoL were among the issues identified in this report. Population trends in aging and improved cancer survival are likely to result in increased cancer prevalence, but few studies on the burden of illness among cancer survivors are available (Yabroff et al., 2004). Because of the importance of rehabilitation and QoL for individuals living with cancer, this study examines these issues in patients with colorectal cancers.
Cancer rehabilitation is an emerging area of research. Cancer rehabilitation is defined as “a dynamic process directed toward the goal of enabling persons to function at their maximum level within the limitations of their disease or disability in terms of their physical, mental, emotional, social, and economic potential” (Dudas, 1984, p. 6). Early work in cancer rehabilitation focused primarily on acutely hospitalized patients who underwent physically disabling surgical procedures (Ganz, 1999). Dietz (1969) focused on adaptive cancer rehabilitation and formulated four related categories: preventive, restorative, supportive, and palliative. In later research, Ganz developed the concept of cancer rehabilitation further to encompass broad areas of human functioning (e.g. physical, psychological, social, and vocational activities). In a classic review, Watson (1992) suggested that cancer rehabilitation involves maximizing independence and dignity while reducing the extent to which cancer interferes with physical, psychosocial, and economic functioning.
Sabers and colleagues (1999) investigated the utility of a cancer adaptation team to recognize and address rehabilitative needs of hospitalized oncology patients. The cancer adaptation team was comprised of a psychiatrist, registered nurse, physical therapist, occupational therapist, social worker, and chaplain. The study demonstrated significant functional gains for cancer inpatients who received interdisciplinary rehabilitation services. A second study by Petersson et al. (2002) focused on rehabilitation efforts in newly diagnosed breast, gastrointestinal, and prostate cancer. In this study, the authors examined two coping styles, “monitoring” or cognitive scanning and “blunting” or cognitive avoidance. They found that the monitoring concept was useful in predicting successful cancer rehabilitation.
Despite the lack of consensus about the meaning and measurement of rehabilitation in the cancer experience, the concept will continue to evolve as cancer survival rates increase in the 21st Century. The present study explores rehabilitation issues further, as well as QoL, in the colorectal cancer population and extends the measurement of the cancer rehabilitation in this understudied population.
Although QoL measurement is a frequent outcome measure in cancer clinical trials, numerous conceptual and operational definitions exist. Ferrans (1990) defines QoL as an individual’s perception of well-being that stems from satisfaction or dissatisfaction with dimensions of life that are important to the individual. The dimensions that affect QoL are further categorized as health and functioning, socioeconomic, psychological-spiritual, and family. Building on this definition, Grant et al. (1990) includes the following broad set of attributes or dimensions of QoL from their meta-analysis of this concept: psychological well-being, physical well-being, sequelae of disease and treatment, social and interpersonal well-being, and financial and material well-being.
Few studies have examined QoL in individuals with colorectal cancer. A Canadian study on QoL in colorectal cancer (Esplen et al., 2004) indicated poorer QoL in those with colon cancer and familial adenomatous polyposis. In addition, uncertainty and lack of information from healthcare providers, isolation, and family communication were the main challenges described by the study participants. Adachi et al. (2003) found that QoL was not significantly different between two groups of patients with colorectal cancer, those who had laparoscopic resection or those who had open colonic resections. A study in Germany (Gunther et al., 2003) found that better continence and bowel function was associated with improved QoL in patients with colorectal cancer or familial adenomatous polyposis. Takahashi et al. (2002) found that the majority of patients in a Mexican sample reported high scores in all evaluated QoL scales. There was a correlation between lower scores of QoL and a higher number of bowel movements. In this study, mean number of bowel movements was four in the daytime and one at night.
In two studies of long-term survivers of breast and colon cancer in Italy (Mosconi et al., 2001) and colon cancer survivors in the United States (Ramsey et al., 2002), a relatively high QoL was found in most individuals. In Ramsey et al.’s study, physical symptoms such as diarrhea and depressive symptoms remained a problem. One study in the United Kingdom (O’Leary et al., 2001) indicated that QoL, particularly in the dimension of physical functioning, was more impaired in those with rectal cancer who underwent low anterior surgical resection than in those individuals who had high anterior resection. These studies on colorectal cancer and QoL employed a variety of instruments for measurement of QoL, and no consensus was found on the most appropriate QoL tool.
Previous studies in the patients with colorectal cancer have indicated that patients with colon cancer and those patients with rectal cancer may report differences in QoL. In their study of QoL and independence in activities of daily living of patients with colorectal cancer undergoing surgery, Ulander, Jeppsson, and Grahn (1997) found a significant improvement in emotional functioning, appetite, and global QoL at follow-up. Patients with colon cancer had less pain and less constipation postoperatively than did those with rectal cancer. Sailer et al. (2002) later investigated health-related QoL for two reconstructive methods following low anterior resection of the rectum. The findings indicated that patients who underwent coloanal J-pouch reconstruction had better functional results and improved QoL in the early months after surgery compared to those who received straight coloanal colostomies. In another study, Esnaola et al. (2002) investigated QoL in patients with locally recurrent rectal cancer treated with resection or nonsurgical palliation. The study findings indicated that symptom management, including more aggressive pain management, may help improve post-treatment QoL. Finally, because those with rectal cancer may be more likely to have colostomies and/or increased frequency of bowel movements, rehabilitation and QoL may be affected more than in the colon cancer population.
Conceptual Model: Rehabilitation Issues and QoL
Rehabilitation issues and QoL are key components of the cancer experience. Cancer rehabilitation is viewed along a continuum from diagnosis, through treatment, and rehabilitation. Although cancer rehabilitation is viewed as an important aspect of cancer as a chronic illness, few studies have explored the concept, particularly in patients with colorectal cancer. In addition, instruments measuring cancer rehabilitation are lacking. Figure 1 displays the dimensions of cancer rehabilitation and QoL. Both cancer rehabilitation and QoL are influenced by the cancer experience and should be evaluated across the trajectory of illness. Some key dimensions are overlapping, and other dimensions are unique. For example, both cancer rehabilitation and QoL share dimensions related to the physical, psychological, and role/relationship or family areas. Cancer rehabilitation also addresses future orientation, and QoL addresses distinct spiritual and socioeconomic aspects. The theoretical framework addressed the unique and overlapping nature of the concepts of cancer rehabilitation and QoL.
The development of the CRQ was based on an extensive review of the cancer rehabilitation literature and subsequent development of the theoretical framework with specific dimensions of cancer rehabilitation—physical, psychological, future orientation, and role-relationship. Conceptual definitions for each of the four dimensions were based on the literature. The physical dimension is defined as the individual’s assessment of their physical recovery from cancer. The psychological dimension includes the individual’s concerns regarding adaptation to the cancer rehabilitation experience. Future orientation is the individual’s self-appraisal of a healthy recovery from cancer. The role-relationship dimension is the individual’s ability to experience meaningful interpersonal relationships across the cancer trajectory.
This study examines the development and testing of the CRQ in patients with colorectal cancer. Specific aims were to develop the CRQ and to determine its reliability and validity; to examine the relationship between cancer rehabilitation and QoL in patients with colorectal cancer; and to compare patients with colon cancer and rectal cancer in relation to rehabilitation and QoL. This study examines the rehabilitation issues and QoL of the colorectal cancer population, but also investigates differences in the study variables for participants with colon cancer and those with rectal cancer. Because those with rectal cancer may be more likely to have colostomies and/or increased frequency of bowel movements, rehabilitation and QoL may be affected more than in the colon cancer population.
Patients with colorectal cancer were identified from the Tumor Registry (N = 327) maintained at the cancer center of a large northeastern U.S. academic medical center. The inclusion criteria ensured that participants had a diagnosis of colorectal cancer; could read and write English; and had been treated with surgery, radiation, and/or chemotherapy for colorectal cancer. The completed questionnaires were returned by mail (33% response rate by 103 participants).
After institutional review board approval, the researchers mailed an explanatory letter along with the study questionnaires to individuals who met the inclusion criteria. Additional data were collected from the medical records of all study participants, including information regarding past medical history, primary cancer site, evidence of metastasis at diagnosis, type of cancer, staging at diagnosis, treatment received, presence or absence of colostomy, treatment goal (i.e., cure, control, palliative), and carcinoembryonic antigen (CEA) levels—increasing CEA levels may be associated with advancing colorectal cancer (Duffy, 2001).
A descriptive, correlational, cross-sectional design was used to examine key survivorship issues including QoL and rehabilitation in patients with colorectal cancer receiving care at an outpatient cancer clinic at a large, northeastern U.S. academic medical center.
The data for the analyses were obtained via a demographic questionnaire and the CRQ, both developed by the investigators, and the Ferrans and Powers Quality of Life Index (QLI) (Ferrans 1990; Ferrans & Powers 1985). Ferrans developed the Quality of Life Index (QLI) for use in oncology populations. Although not specifically used in previous studies in the colorectal cancer population, the instrument has yielded high reliability and validity in other oncology populations and in the present study.
The demographic questionnaire included questions about age, gender, and marital status as well as optional questions regarding ethnicity and total annual family income.
Despite the importance of cancer rehabilitation, the oncology literature is limited in its description of instruments measuring the concept. The CRQ was developed by the investigators as a measure of cancer rehabilitation. After a review of the literature, a model of cancer rehabilitation was developed with four domains: physical, psychological, role-relationship, and future orientation. Initially, 34 items were developed on a 5-point Likert-type scale ranging from “strongly disagree” to “strongly agree.” Three cancer rehabilitation experts, who rated each of the original items, determined content validity. The instrument was subsequently revised resulting in a 26-item version of the CRQ with subscales measuring the following domains: physical, psychological, future orientation, and role-relationship.
CRQ scores were summed for each of the 26 items for a total CRQ score and for physical, psychological, future orientation, and role-relationship subscales. Negatively worded items were reversed for scoring procedures. Higher scores indicated greater satisfaction with cancer rehabilitation issues. Specific rehabilitation issues examined were fatigue, appetite, pain, weight issues, anxiety, spirituality, health insurance, financial issues, and job-related issues. In early psychometric testing of the 34-item version, internal consistency reliabilities for the CRQ (alpha coefficients) were .88 for the total CRQ, .82 for the physical subscale, .72 for the future orientation subscale, .61 for the role-relationship subscale, and .43 for the psychological subscale. After initial psychometric testing, the original 34-item version was revised to a 26-item final version of the CRQ.
In this study of patients with colorectal cancer, Cronbach’s alpha was high. The 26-item CRQ had a standardized alpha coefficient of .88. Alpha coefficients for the subscales in this sample of patients with colorectal cancer were .82 for the physical subscale, .77 for the future orientation subscale, .81 for the role-relationship subscale, and .85 for the psychological subscale. Preliminary test-retest reliability was done for 19 subjects after a 2-week interval with a correlation coefficient of .83.
A principal components factor analysis (PCA) was performed to assess construct validity of the CRQ. There was a subject-to-item ratio of 4:1 for the factor analysis procedure. PCA was accomplished with an orthogonal solution, which yielded the four original factors with eigenvalues greater than 1.0. Results from the psychometric analysis of the 26-item CRQ indicated a profile of the four key domains of cancer rehabilitation with all items retained in this version. All four subscales matched the conceptually derived components—physical, psychological, future orientation, and role-relationship—that were the foundation for the CRQ.
Ferrans and Powers QLI
The measurement instrument for the concept of QoL was the Ferrans and Powers QLI. The total QLI measures specific QoL domains including psychological-spiritual, socioeconomic, health and functioning, and family. The instrument has two sections, one of which measures satisfaction with the items and the other of which measures importance of the items. Respondents rate each item on a 6-point Likert-type scale. QoL scores were calculated by adjusting satisfaction scores for importance scores, producing the highest score for items that have both high-satisfaction and high-importance responses.
Satisfaction was measured through responses to 34 items on the 6-point Likert scale, ranging from very satisfied to very dissatisfied. The importance of each of these 34 items to the individual was rated on a 6-point Likert-type scale ranging from very important to very unimportant. The scores were calculated by weighing each satisfaction response with its corresponding importance response. Individual item scores belonging to a given domain were summed for a domain score. The domain scores were then summed for an overall QoL score ranging from 0 to 30. The highest scores were produced by high satisfaction/high importance responses and the lowest were produced by high dissatisfaction/high importance responses.
In early psychometric testing, criterion-related (concurrent) validity was supported in two different samples with correlations of .76 and .65 between scores on the QLI and an overall satisfaction with life question (Ferrans & Powers, 1985). Cronbach’s alphas of 0.93 and 0.90 provided support for internal consistency reliability in studies conducted by Ferrans and Powers (1985). Test-retest correlations of .87 in one sample with a 2-week interval and .81 in another sample with a 1-month interval supported stability and reliability (Ferrans & Powers, 1985).
In the present study, Cronbach’s alpha was .87 for the total QLI, .80 for the psychological-spiritual subscale, .60 for the socioeconomic subscale, .82 for the health and functioning subscale, and .81 for the family subscale. Only the Social Functioning subscale yielded Cronbach’s alpha less than .70. Previous studies have yielded Cronbach’s alpha reliabilities for the total QLI ranging from .90 to .95 and subscale alphas ranging from .66 to .90 (Ferrans, 1990; Ferrans & Powers, 1985).
Data analysis was accomplished using descriptive statistics, including frequency distributions, mean values and standard deviations to summarize data. Analyses of variance and t tests were used to identify differences among groups of different age, gender, level of education, type of cancer (colon or rectum), and treatment-related data.These t tests were computed to analyze the mean differences on the CRQ and the QLI between patients with colon cancer and patients with rectal cancer. Pearson correlation coefficients were computed to examine the relationships among the major study variables (cancer rehabilitation and QoL) and demographic and treatment-related measures (Duffy, 2001).
Demographic and treatment-related data are displayed in Table 1. The participants in the study consisted of 103 persons, the majority of whom were male (63.1%), married (65%), and Caucasian (63.1%). Participant ages ranged from 41 to 93 years with a mean age of 66 years (SD = 10.50). The sample was evenly divided among those with a diagnosis of cancer of the colon (48.5%) and cancer of the rectum (48.5%); for 3% of the sample, tumor site (colon or rectum) was not reported by the participants. The majority of cancers were classified with a Duke’s Staging of A or B (58.3%) with 33.9% classified with a staging of C or with distant metastases, indicating that almost 60% had tumor confined to the colon or rectum. This is supported by the fact that the vast majority of the sample (85.4%) had no evidence of metastatic disease at the time of diagnosis. In this sample, 97.1% received surgery, 90.3% were given intraoperative radiation, and a smaller, but sizable percentage were treated with radiation (55.3%) and/or chemotherapy (41.7%).
The results of this study indicate that patients with colon and rectal cancer reported significant differences on the physical, future orientation, and role-relationship subscales and the total CRQ. For the QLI, significantly lower scores were reported on the family subscale for patients with rectal cancer in comparison with those with colon cancer. A Pearson correlation coefficient of 0.71 demonstrated a strong intercorrelation between the QLI and CRQ. This finding is not surprising because of the conceptual overlaps of QOL with rehabilitation issues and lends support for the construct validity of the CRQ. Scores on the total CRQ ranged from 33 to 127 (M = 92.48, SD = 18.15). For the QLI, scores ranged from 7 to 30 (M = 23.20, SD = 4.73).
To compare scores for patients with colon cancer and patients with rectal cancer, t tests were performed. Significant differences existed on the CRQ scores for the physical subscale, the future orientation subscale, the role-relationship subscale, and the total CRQ (see Table 2). Scores were not significantly different on the psychological subscale of the CRQ, nor did CEA scores or presence/absence of metastatic sites differ significantly for patients with colon versus rectal cancer.
Patients with rectal cancer had significantly lower scores on the family subscale for the QLI than did patients with colon cancer. However, scores were not significantly different for the total QLI or the health and functioning, social functioning, and psychological-spiritual subscales. These findings support the importance of the QLI as a measure of QoL, however specific rehabilitation issues (physical, future orientation, role-relationship) may be more accurately distinguished by the CRQ. The psychological subscale of the CRQ did not demonstrate significant differences for patients with rectal and colon cancer. Table 3 displays the items and domains of the CRQ.
The results of this study suggest that patients with rectal cancer have lower scores on cancer rehabilitation and QoL than patients with colon cancer. These findings may be related to the fact that most of the patients with rectal cancer (n = 48) had colostomies performed and the patients with colon cancer did not. The CRQ measures aspects of rehabilitation including physical issues, role-relationship issues, and future orientation that may not be measured by the QLI. Thus the CRQ may be an important measure of the rehabilitation experience for the population of patients with colorectal cancer. In addition, distinguishing the specific aspects of the cancer rehabilitation experience may be more accurately measured by the CRQ in certain cancer populations.
The CRQ was found to be a reliable and valid measure of rehabilitation issues for this sample of patients living with colorectal cancer. The instrument also indicated greater sensitivity in yielding significant differences on rehabilitation for patients with rectal and colon cancer. Further study and psychometric analysis of the CRQ is necessary to evaluate its usefulness in research and clinical practice.
These study findings contribute important implications for rehabilitation nursing practice. As the numbers of patients living with colorectal cancer increases, offering cancer survivors support is central to patient care and family support (Ferrell et al., 2003). Oncology nursing practice, education, and research are increasingly focused on evaluating QoL and rehabilitation issues during cancer treatment and across the survivorship trajectory. Thus, nursing assessment may be enhanced with both clinician and patient-based assessments of QoL and rehabilitation issues. In this study, both the QLI and the CRQ have demonstrated utility in measuring the impact of cancer in this population. Limitations of this study include its cross-sectional design and the limited type of cancer examined. Studies with longitudinal analysis will contribute to the body of research in this population and contribute to the understanding of QoL and rehabilitation across the disease trajectory. This study was the initial use of the CRQ, thus further administration of the tool to examine the reliability and validity in other populations is necessary.
Participants were patients with colorectal cancer who could read and write English and complete a mailed questionnaire. It should also be noted that only 33% of participants returned the completed questionnaire, and those who participated may differ from patients who did not participate in the study. The response rate may have been limited by the use of a mailed questionnaire, rather than providing the survey during patient appointments at the outpatient clinic.
The study was conducted in one large cancer center in the northeast United States and the results may not be generalizable to other cancer rehabilitation populations. A generic instrument was used to measure QoL and a newly developed instrument was used to measure cancer rehabilitation; thus further research in the understudied population of colorectal cancer patients is needed. Finally, the cross-sectional nature of the study limits the findings to patients with colorectal cancer at one point in their disease; inclusion in the study was not limited to early or late-stage colorectal cancer. Future research should include longitudinal studies measuring rehabilitation issues at various stages of patients’ illnesses so that changes can be examined further across the cancer trajectory.
Implications for Practice and Research
Issues of rehabilitation and QoL are critical areas of study in the care of patients with colorectal cancer. Both rehabilitation and QoL measurement across the continuum of the cancer experience will allow for the study of physical, psychological, spiritual, and social well-being of patients affected by cancer and its treatment. Accordingly, research on cancer survivors is an important element for rehabilitation nursing practice and research. Furthermore, study of QoL and rehabilitation issues is necessary in the population of individuals affected by colorectal cancer.
Ferrell et al. (2003) identified the importance of expanding education and research to ensure quality care of cancer survivors. Such studies allow for the development of nursing interventions aimed at improving the rehabilitation of oncology patients. The present study was a cross-sectional design, thus longitudinal study across the spectrum of cancer rehabilitation, and at treatment endpoints, will add important data on patients with colorectal cancer.
Distinguishing the unique needs of patients with colon cancer and patients with rectal cancer is necessary. Our study provides information for rehabilitation nurses and identifies differences between those patients living with colon cancer and patients living with rectal cancer, thus supporting possible interventions to improve rehabilitation and QoL in these individuals. The CRQ may assist rehabilitation nurses in identifying needs of patients with colorectal cancer, specifically in that the CRQ may measure unmet needs related to survivorship, for example, job-related issues, health insurance concerns, health information needs, symptom management aspects, leisure activities, and sexual functioning. For example, rehabilitation nurses may consider interventions aimed at symptom management for individuals with colorectal cancer—even after completion of surgery and oncology therapies. Specific areas such as work-related issues, financial issues, and future planning were identified as aspects for rehabilitation that nurses should explore with patients across the cancer trajectory—particularly in the rehabilitation process. Further studies of symptoms, symptom management, QoL, and rehabilitation issues in this population should be undertaken to explore the rehabilitation process in this population.
About the Authors
Patrice K. Nicholas, DNSc MPH RN APRN BC, is a professor and the chair of Advanced Practice at the MGH Institute of Health Professions, Boston, MA. Address correspondence to her at 36 1st Ave., Boston, MA 02129 or firstname.lastname@example.org.
Jean D’Meza Leuner, PhD RN, is director and professor at the University of Central Florida, School of Nursing, Orlando, FL.
Jessica M. Hatfield, MSN RN, is a staff nurse at the Beverly Hospital, Beverly, MA.
Inge B. Corless, PhD RN FAAN, is a professor at the MGH Institute of Health Professions, Graduate Program in Nursing, Boston, MA.
Karen H. Marr, MSN RN, is a program nurse of thoracic oncology at the Dana Farber Cancer Institute, Boston, MA.
Mary K. Mott, MSN RN CS, is an adult nurse practitioner at Massachusetts General Hospital, Boston, MA.
Susan Cross-Skinner, MSN RN OCN, is an adult nurse practitioner at Phillips Andover Academy, Andover, MA.
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