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The carcinoembryonic antigen (CEA) blood test is included in most colorectal cancer follow up protocols, despite little clear evidence for its cost‐effectiveness and survival benefit. In this study, patients' views were sought on the use of the CEA blood test in their follow up. Strong associations were found between the age of a patient's children and their concern about cancer recurrence and between concern about recurrence and anxiety about CEA test results (p<0.0001). Many patients expressed a desire for prognostic information, however uncertain or poor. Patients' views should be sought when designing colorectal cancer follow up protocols to ensure their needs are adequately addressed.
In this study we aimed to increase knowledge of patients' attitudes and preferences towards carcinoembryonic antigen (CEA) monitoring. Much debate has recently surrounded the routine use of serum CEA testing in the follow up of patients who have undergone potentially curative treatment for colorectal cancer. In the past few years, evidence for the benefit1,2 and cost‐effectiveness3 of intensive follow up has grown. Earlier detection of relapse in colorectal cancer leads to improved survival primarily through detection of resectable recurrences.1 Although surveillance computed tomographic scanning appears to confer the most benefit in this setting, around 20% of patients have an elevated CEA as the first indication of relapse.2 There is little doubt, therefore, as to the usefulness of the CEA test, but an absolute benefit in terms of survival has yet to be demonstrated. Results of an ongoing randomised trial (FACS) addressing this issue are awaited.
The attitudes of colorectal cancer patients to follow up have been previously studied, with patients generally reporting a strong preference for follow up, even if it did not lead to earlier detection of recurrence and despite any anxieties provoked by the follow up visit.4 The attitudes of patients towards specific investigations, notably the CEA blood test, have not been formally examined. Expanding knowledge in this regard will help to address more effectively the information needs of patients on this subject.
In view of the lack of any existing research tool which would be suitable for this purpose, we designed our own questionnaire which was reviewed by the multidisciplinary colorectal cancer team. Following a pilot exercise, in which 20 patients in a district general hospital oncology clinic were questioned,5 100 patients attending an oncology clinic in a regional cancer centre (Edinburgh) for colorectal cancer follow up were enrolled in this study. All patients had had curative resection of a colonic or rectal primary cancer, and the majority had also had adjuvant chemotherapy and/or radiotherapy. Patients were excluded from the study if CEA monitoring was deemed inappropriate in their case (for example, unfit for intervention), if they were known to have metastatic disease, or if it was anticipated that they would find the questionnaire distressing. The study was approved by the local research ethics committee. Written informed consent was obtained, then a questionnaire given. The questionnaire sheet contained information about the CEA blood test, including explanations as to the meaning of false positives and false negatives, followed by questions on demographics, general health, concern about recurrence and specific questions regarding the CEA blood test. All questions, including demographic questions, were categorical, with patients being asked to circle the most appropriate answer. One hundred and eight consecutive eligible patients were approached with a view to possible study entry, and 100 of these consented to participate. Ninety‐one anonymous questionnaires were completed in the clinic waiting room or returned by post.
Patient characteristics are detailed in table 11 along with answers to questions regarding their concerns about disease recurrence. Statistical analysis was carried out using χ2 test statistics except for data relating to gender, marital and family status, to which the Mann‐Whitney test was applied. Questionnaire responses are detailed in table 22.. There was a strong association between the age of a patient's children (under 21) and their concern about cancer recurrence. The cut‐off of age 21 for patients' children was pre‐determined and chosen by the investigators as an age at which most offspring are likely to be independent of their parents. The results suggest a trend towards increased concern about cancer recurrence in patients treated more recently, those in good health and in older patients. Concern about the CEA test result was strongly correlated with concern about cancer recurrence (p<0.0001).
The majority of patients wish to have the CEA blood test as part of their routine follow up for colorectal cancer, despite concerns regarding its sensitivity and specificity and the relatively low cure rate of recurrent disease. In particular, patients with younger offspring were significantly more concerned about cancer relapse than any other group. The trend towards increased concern in older patients is somewhat curious in view of the results relating to the age of offspring. In the analysis of multiple variables in a relatively small sample population, it is possible that the significant associations observed could have occurred by chance. Nonetheless, the trends observed are of interest and can help inform clinicians in planning follow up protocols and in communicating information regarding surveillance tests to their patients. In their answers and comments, many patients expressed a desire for knowledge about their prognosis, however uncertain or poor. Any survival benefit (or lack of) as a result of CEA testing must be considered alongside the views of patients when making decisions regarding follow up procedures, and their information requirements should be carefully addressed.
Intensive follow up following curative resection for colorectal cancer is cost‐effective and improves survival. The cost‐effectiveness and survival benefit of the CEA blood test in colorectal cancer follow up is uncertain.
The majority of patients wish to have the CEA blood test as part of their follow up, despite the low cure rate of recurrent colorectal cancer. Patients with younger children are more likely to experience anxiety about recurrence of their colorectal cancer.
We thank G Kerr for assistance with statistical analysis.
Competing interests: None to declare.
Ethical approval: This study was approved by a local research ethics committee.
Contributors: NS and MM designed the study, piloted the questionnaire and wrote the manuscript. RH and GK recruited patients and collected data.