|Home | About | Journals | Submit | Contact Us | Français|
Despite advances made in colorectal cancer (CRC) prevention, compliance with screening recommendations among individuals who may be at familial risk for the disease is low. Perhaps this under-representation reflects how CRC patients communicate with their first degree relatives about their potential risk for the disease. This study examined the psychosocial factors influencing whether CRC patients communicate with their siblings about CRC risk. The sample included CRC patients with siblings who enrolled in a colon disease registry at a NYC metropolitan hospital. Participants completed questionnaires regarding their current psychosocial functioning, perceived risk of sibling’s development of CRC, and communication of CRC risk with their siblings. Patients were predominantly Caucasian, with a mean age of 60.4 yrs. Of the 127 patients, 60% engaged in discussions with their siblings regarding their CRC risk. Patients diagnosed with CRC before the age of 45 were more likely to discuss the risk of CRC with their siblings (p < .01). These data suggest that CRC patients may serve as an effective vehicle to promote CRC screening and support the need for health care providers to not only educate patients of the familial risk of CRC, but to also encourage these patients to communicate this information with their siblings.
Colorectal cancer (CRC) is the second leading cause of cancer mortality in the U.S. This year, it is anticipated that 148,810 new cases of CRC will be diagnosed, and 52,180 deaths will occur because of this disease1. Improvements in CRC screening and advances in treatments have resulted in a decrease in CRC mortality rates. Approximately 20% of CRC is considered familial, meaning that there is a family history of CRC without a known genetic predisposition2. Having a first-degree relative (FDR) with CRC approximately doubles the risk of CRC, and if the affected relative was diagnosed with CRC younger than age 45, the risk is increased four-fold3. Moreover, having a FDR with CRC increases the likelihood of having precancerous polyps (adenomas) compared to those without such history4. Therefore, current clinical guidelines recommend that individuals with a FDR who was diagnosed with CRC or an adenomatous polyp before age 60, start CRC screening with colonoscopy at age 40, or ten years earlier than the youngest case in the family5.
Despite having a family history of CRC, FDRs of CRC patients are often noncompliant with screening recommendations, with screening rates ranging from 25 – 75%5. Using data from the 2000 National Health Interview Survey, Murff and colleagues examined colonoscopy screening rates among individuals with first-degree relatives who have been diagnosed with CRC6. Among the respondents with a FDR with CRC (N= 279), only 25% reported participating in endoscopy in the past ten years and even less (9%) participated in fecal occult blood testing within the past year. These authors suggested that perhaps familial communication of CRC risk is lacking between CRC patients and their FDRs and in turn, this may influence the FDR’s perceived risk for CRC and screening behaviors. Prior studies have suggested that lack of physician referral, fear of embarrassment, and lack of awareness of increased risk for the disease serve as barriers to adhering to CRC screening recommendations among individuals at increased risk of acquiring CRC7, 8. To compound these factors, several systemic barriers including lack of health insurance and insufficient time to refer patients during primary care visits9 further inhibit participation in CRC screening.
Patients living with CRC can be influential in encouraging family members to participate in colonoscopy by educating family members regarding their CRC risk. Unfortunately, too often, CRC patients do not inform their family members of their own disease status, let alone discuss their increased risk for CRC. Pho and colleagues10 examined communication between CRC patients and their FDRs regarding CRC risk and screening. Less than half (41%) of the patients were aware that their FDRs may be at an increased risk for CRC and among those individuals, only 28% informed relatives of their disease status. Underreporting or lack of communication of CRC status has also been demonstrated by report from family members of individuals who have been diagnosed with CRC. Ganz and collegaues11 conducted a survey among FDRs of patients with confirmed CRC diagnosis. Among the 426 respondents, approximately a quarter of them were unaware of the relative’s CRC diagnosis. FDR’s awareness of the patient’s CRC status was found to be associated to the patients’ stage at diagnosis as well as the FDR’s worry and perceived risk of CRC.
Considering prior studies have focused on psychosocial factors among FDRs and how these influence screening, the current study is going to approach the issue beginning first with CRC patient. Previous reports have explored factors influencing the prevalence of CRC status disclosure between CRC patients and their families and alternatively FDR’s of CRC patients awareness of this status, none have explored the psychosocial experiences of the CRC patient and what role this may have on if and how they communicate with their family members. This study aims to fill this gap in the literature by examining the psychosocial factors that might influence CRC patient’s discussion of CRC risk with their siblings. The role of psychosocial factors including psychological distress, quality of life and social support offer the opportunity to identify factors that can be assessed and intervened upon, perhaps enhancing or increasing communication between patients and their families.
Participants in this sub-study were members of the Mount Sinai Colon Disease Family Registry. This registry was developed in 1999 as a database to identify patients who may: 1) benefit from genetic counseling and testing and/or health education efforts; 2) identify patients who may be at risk for colon disease (including patients with a variety of colon diseases and their family members); and 3) serve as a resource for research with CRC and related diseases. Participants in this registry received their care from physicians associated with The Mount Sinai Hospital, an urban teaching hospital in New York City. Recruitment for participation in the registry began after patient’s received their initial care at Mount Sinai Hospital. The response rate was 90% for a total of 690 registered patients. Assessments were conducted in a semi-structured interview in person (15%) or by telephone (85%). The questionnaires included in the registry were mailed to participants if requested. No differences in demographic variables and assessment responses were found between modes of interview. No compensation was provided for participation in the study.
This study was approved by the Mount Sinai School of Medicine Institutional Review Board. All study participants provided informed consent and HIPAA (after April, 2003). Overall, 898 patients were recruited to participate in the registry. The response rate was 90% for a total of 690 registered patients. The present study focuses only on registry participants who have confirmed diagnoses of CRC and who had siblings who were currently alive. Inclusion criteria for this sub-study were that participants: (a) have been diagnosed with CRC and (b) indicated that he/she has a living sibling(s). Participants were excluded from this study based on the following criteria: (a) history of colon disease in addition to CRC (e.g. ulcerative colitis) or (b) missing data on any outcome variables due to incompletion of the questionnaires included in the registry. Among the 306 patients diagnosed with CRC in the registry, 37 reported co-diagnoses of UC or Crohn’s disease, 140 individuals did not have any siblings, and two individuals did not complete all of the questionnaires included in the interview, leaving 127 participants included in the present study.
These background questions assess participants’ age, gender, marital status, income level, education level, and ethnicity.
Having a FDR with CRC approximately doubles the risk of CRC, and if the affected relative was diagnosed with CRC younger than age 45, the risk is increased four-fold3. Therefore, the age of diagnosis was examined as a potential factor influencing communication of CRC risk. A dichotomous variable was created dividing participants who were diagnosed with CRC prior to the age of 45 from those diagnosed later in life. Time (in years) since diagnosis of CRC was also examined as a potential factor influencing communication between CRC patients and their siblings.
Participants were queried regarding how their personal history of CRC has impacted the risk that their family members will develop CRC. Participants were asked to answer five questions regarding their perceived risk and worry that a first degree relative (FDR) will develop CRC and whether or not they have discussed this risk with their family members (see Figure 1.).
Psychological functioning was assessed using the 18-item Mental Health Inventory12 on a six-point scale indicating how often they experience a particular feeling. Items were reverse scored when the questions were negatively phrased with higher scores indicating greater distress. A summary score including all 18-items was computed and demonstrated strong reliability (alpha = .92). There are no clinical cutoff scores for the MHI, however results from this analysis are compared to a normative sample offered by the authors of the scale13.
Distress was assessed using the 15-item Impact of Event Scale (IES)14, which measures responses to traumatic events (in this case, CRC) as either intrusive (7 items, alpha = 0.86) or avoidant (8 items, alpha = 0.84) thoughts. This questionnaire was revised to ask questions specifically pertaining to CRC. An example of an item assessing intrusive thoughts is “Thought about it [CRC] when I didn’t mean to.” Participants could provide endorsement on a scale of 0 = not at all to 5 = often. Considering a maximum total score of 45, clinically significant thresholds for the IES have been established as low (< 8.5), medium (9 – 19), and high (> 19) for total distress12. For purposes of analysis in this study, IES scores were analyzed separately according to the two subscales.
The Interpersonal Support Evaluation List (ISEL) 15 is a 40-item assessment of the quantity and quality of social support. Participants were asked to endorse items as true or false and negative items were reverse scored as necessary. A summary score was created with higher scores indicating better perceived social support (Kuder-Richardson = .95).
Participants rated their perceived overall physical condition and quality of life in the past week in two items on a scale from 0 = very poor to 7 = excellent.
One of the participants did not complete all of the items of the MHI questionnaire so these missing data were excluded from analyses. Missing or skipped items on the MHI, ISEL and IES occurred at random and were replaced by the average of the participants’ scores within that same measure. Univariate analyses were conducted between sociodemographic, medical, and psychosocial factors and the primary outcome of CRC communication of CRC risk with their siblings. Chi-square and Fisher exact tests were used for categorical data. ANOVAS and the Student unpaired independent t-tests were used for continuous data. Findings with a P value less than 0.05 were considered statistically significant. To further understand the role of specific factors associated to communication, correlates of communication of CRC risk with siblings found to be significant in the univariate analysis were then entered simultaneously into a regression model using the SAS (Version 9.1) procedure LOGISTIC.
Demographic and psychosocial characteristics of the participants are shown in Table 1.
Sixty-five females and 62 males were included in the analyses. Participants ranged between 29 and 83 years of age, with a mean of 60.4 years (SD = 12.6). Most participants reported being married or living as a married couple (65.4%). The majority of individuals reported having a high income level (60.6% reported an annual income of more than $70,000) and were highly educated (50.4% reported completing a bachelor’s or graduate degree). The sample was predominantly Caucasian (79.5%), followed by African American (7.1%), Latino (9.4%), and other (4.0%).
Regarding general psychological distress, the CRC patients in this study reported significantly more distress than the normative population on the MHI 11 (t (3203) = 16.36; p < .01, M = 43.4; SD = 14.1 (Mnorm = 23.0; SD norm = 19.2). Scores on the IES revealed that participants experienced more avoidant (M = 10.56; SD = 9.54) than intrusive thoughts (M = 9.48; SD = 9.12). Based on the clinical thresholds provided by the authors of the IES, a large proportion (45.7%) of patients in this study experienced high levels of cancer-specific distress while 19.7% of the sample experienced moderate levels and 34.6% experienced low levels of cancer-specific distress. Scores on the ISEL ranged from 3.0– 28 (M = 7.21; SD = 4.54). On a scale from zero to seven (0 = very poor to 7 = excellent), approximately 68.5% of participants rated their physical QOL a five or greater (M = 5.09; SD = 1.54) and 73.2% rated their overall QOL a five or greater (M = 5.31; SD = 1.71). In general, the majority of participants did not perceive their siblings were at an increased risk for CRC (46% indicated their FDRs were at risk for CRC) and even fewer perceived their FDRs to be at a higher risk for CRC compared to the average person (26%). Approximately half of the participants expressed worry that their siblings will have CRC and more than half (53%) did not believe that their personal CRC affects their FDRs chances of developing CRC.
Sixty percent (n = 76) of CRC patients indicated that they had discussed the risk of CRC with their siblings (Table 1). For those with annual incomes over $70,000, perceptions that siblings are at higher risk than an average person of getting CRC, and that a personal history of CRC influenced the patients’ sibling’s risk, were significantly related to whether or not patients discussed CRC risk with their siblings (p < .05). Among the medical factors, age of diagnosis was significantly associated with communication of CRC risk between patients and their siblings. Neither psychological distress nor social support were associated with patient communication with their siblings. When the significant factors were considered together in a logistic regression as possible correlates of willingness to discuss CRC risk with siblings, only the age of CRC diagnosis remained a correlate of willingness to communicate CRC risk with siblings (Wald Chi-Square = 8.89; p < .01, O.R. 0.29; CI: 0.08, 0.61). Younger CRC patients were significantly more likely to discuss CRC risk with their siblings compared to those patients diagnosed after the age of 45.
This study examined CRC patients’ perceptions of their siblings’ risk of having CRC and how psychosocial factors influence the communication between patients and their siblings regarding CRC. Firstly, it is noteworthy that the majority of participants in this study (60%) reported that they have had discussions with their siblings regarding CRC risk, particularly among individuals diagnosed at a younger age. This percentage exceeds those found in prior studies examining whether or not CRC patients disclose their disease status10, 11. CRC patients may serve as a valuable tool for promoting CRC screening. Therefore, health care providers would benefit from adequately educating all CRC patients, regarding risk factors for CRC and screening recommendations for individuals at increased risk for the disease, particularly those diagnosed before the age of 45 considering the increased familial risk for CRC among this subgroup of patients.
Consistent with previous studies16, 17, 18 perceptions that siblings have a heightened risk for CRC was associated with patients’ communication about CRC with their siblings. However, when considered together with the other significant factors, perceived risk no longer contributed to the model of communication. These findings suggest that perceived risk of sibling CRC is a relevant, but not a primary factor influencing when and how patients communicate about their illness. Rather, the age at which CRC patients are diagnosed with their illness remained a significant factor influencing communication of CRC risk. Although age of diagnosis and measures of perceived risk that sibling will have CRC were not significantly correlated, it may be possible that individuals diagnosed with younger onset CRC perceive their disease as more threatening and discuss their disease with their family more than those diagnosed later in life. The measures of perceived risk were created specifically for this study and have not been validated by prior research. This may serve as a limitation of the study. However, the structure of the questions used in the present study was designed similar to prior research examining individual’s perceived risk for CRC19, 20, 21, 22 examining individual’s perceived risk for CRC. Additional research is needed to examine the construct of perceived risk among individuals affected by CRC and how it pertains to communication with their families.
Contrary to expectations, psychological distress and social support were not significantly associated with communication with siblings. Considering that, overall, patients reported having adequate levels of social support, perhaps the social support measure used in this study did not have the specificity to examine patients’ relationships specifically with their siblings and how they communicate with their siblings about problems in general. A recent study conducted by Stroup and colleagues revealed that individuals with a known family history of BRCA1 who participated in genetic testing perceived changes in family cohesion23 after receiving the results of the genetic tests. These authors suggest that external family strains may have influenced changes in family cohesion, in turn influencing how families communicate regarding CRC. Additional psychosocial factors such as strong familial support of CRC screening and sibling closeness have also been shown to serve as positively influencing FDRs intentions to screen10, however perceived risk was not. Perhaps additional assessment of family functioning, specifically among siblings closeness, would provide further insight into the role of distress and social support on communicating about CRC risk.
Our study is limited by its homogenous sample which was primarily comprised of Caucasians individuals from higher socioeconomic backgrounds. The study was conducted at an academic tertiary care center, and perhaps may not be representative of patients who receive care at smaller institutions or in rural areas. Prior research has found disparities in CRC screening between races among individuals with a family history of CRC18. Future studies may benefit from expanding the findings of this research in multiple institutions and via population-based studies with a more diverse population. This study was cross-sectional in design and only assessed CRC patients’ intent to communicate with siblings. Therefore, we could not confirm whether or not patients actually engaged in these conversations with their siblings and the psychosocial impact of doing so.
This study provided an exploratory understanding of communication between CRC patients and their siblings regarding the increased CRC risk among FDRs of CRC patients. Clinical implications of this study suggest that health care providers should perceive all CRC patients as a potential vehicle to promote CRC screening among family members. Considering the high percentage of CRC patients in this study who reported communicating about CRC risk with their family members, efforts need to take advantage of this communication and educate CRC patients regarding screening guidelines for individuals with a family history of CRC. Moreover, educational efforts may benefit by dispelling fears about communication about disease status and risk towards fostering supportive communication regarding health in general among family members. Considering patients who were diagnosed with CRC before the age of 45 appeared more willing to discuss CRC risk with their siblings, perhaps these patients offer unique opportunities for promoting CRC screening. Theoretically, this study offers insight into the psychosocial factors influencing communication of CRC risk among families affected by the disease. Despite expectations that distress or perceived risk would make patients more inclined to communicate with siblings about risk, the primary indicator of age of diagnosis suggests that medical markers such as this may be the most effective means of identifying which patients to target for health promotion interventions. Future research would benefit from expanding on the present study to further understand how CRC risk is communicated among siblings and how this communication impacts screening behaviors.
SOURCES OF SUPPORT: The writing of this paper was supported by Grant No. NCICA81137-05 from the National Cancer Institute.