Most Patients with Colorectal Tumors at Young Age Do Not Visit a Cancer Genetics Clinic

Radboud University Nijmegen Medical Center Department of Medical Oncology Nijmegen Netherlands
Diseases of the Colon & Rectum (Impact Factor: 3.75). 06/2008; 51(8):1249-1254. DOI: 10.1007/s10350-008-9345-x
Source: PubMed


This study examined the referral process for genetic counseling at a cancer genetics clinic in patients with colorectal cancer and to search for determinants of variation in this referral process.

Patients who were recently diagnosed with colorectal cancer at a young age or multiple cancers associated with Lynch syndrome, hereditary nonpolyposis colorectal cancer, (N = 119) were selected from PALGA, the nationwide network and registry of histopathology and cytopathology in the Netherlands. In a retrospective analysis, we examined whether these patients visited a cancer genetics clinic and identified determinants for referral to such a clinic. Factors of patients, professional practice, and hospital setting were explored with logistic regression modeling.

Thirty-six (30 percent) patients visited a cancer genetics clinic. Seventy percent of patients whom the surgeon referred to a cancer genetics clinic decided to visit such a clinic. Analysis of determinants showed that patients with whom the surgeon discussed referral and that were treated in a teaching hospital were more likely to visit a cancer genetics clinic.

The referral process is not optimally carried out. To deliver optimal care for patients suspected of hereditary colorectal cancer, this process must be improved with interventions focusing on patient referral by surgeons and raising awareness in nonteaching hospitals.

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Available from: Fokko M Nagengast
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    • "Due to the design of our study, we cannot deduce how many counselees eligible for referral are not being referred for cancer genetic counseling. Other studies suggest that this percentage is high: only 22% of the Australian patients who might benefit from cancer genetic counseling were actually referred (Wong et al. 2008) and only 30% of Dutch patients with colon cancer at a young age visited a genetics department (Overbeek et al. 2008). This should be a cause for concern given the consequences for at least the part of such patients (and their relatives) which are eligible for genetic counseling and are willing to be referred, but are unaware of this possibility themselves. "
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    ABSTRACT: Both physician and patient play a role in the referral process for cancer genetic counseling. Access to such counseling is not optimal because some eligible patients are not being reached by current referral practice. We aimed to identify factors associated with the initiator of referral. During a 7-month period, we recorded demographic characteristics like gender, personal and family history of cancer, ethnicity and eligibility for genetic testing for 406 consecutive counselees using a specially designed questionnaire. Counselees were seen in a university hospital or a community hospital (n = 7) in the Netherlands. We also recorded educational level of each counselee, clinical setting and who initiated referral. Descriptive statistics were used to describe the counselees' general characteristics. We analysed the association between counselee characteristics and the initiator of referral by logistic regression. The majority of counselees seemed to have initiated referral themselves but were indeed eligible for genetic testing. In comparison to the general population in the Netherlands, the counselees had a higher level of education, and there were fewer immigrants, although a higher level of education was not found to be a facilitating factor for referral. The clinical setting where a counselee was seen was associated with initiator of referral, although this relationship was not straightforward. There is a complex interaction between clinical setting and initiator of referral, which warrants further research to elucidate the factors involved in this relationship. Patients seen in cancer genetic counseling do not reflect the general population in terms of educational level or ethnicity.
    Full-text · Article · Mar 2012 · Journal of community genetics
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    • "If the result is positive, the surgeon is advised to consider referring the patient for genetic counselling, which might include germline DNA analysis. One year before the introduction of the MIPA procedure, only 30% of patients at risk for Lynch syndrome were recognized as such by the traditional method based on family history [18]. Other studies also reported that family history did not adequately identify patients at risk for Lynch syndrome [10–13]. "
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    ABSTRACT: According to the Dutch Guideline on Hereditary Colorectal Cancer published in 2008, patients with recently diagnosed colorectal cancer (CRC) should undergo microsatellite instability (MSI) testing by a pathologist immediately after tumour resection if they are younger than 50 years, or if a second CRC has been diagnosed before the age of 70 years, owing to the high risk of Lynch syndrome (MIPA). The aim of the present MIPAPS study was to investigate general distress and cancer-specific distress following MSI testing. From March 2007 to September 2009, 400 patients who had been tested for MSI after newly diagnosed CRC were recruited from 30 Dutch hospitals. Levels of general distress (SCL-90) and cancer-specific distress (IES) were assessed immediately after MSI result disclosure (T1) and 6 months later (T2). Response rates were 23/77 (30%) in the MSI-positive patients and 58/323 (18%) in the MSI-negative patients. Levels of general distress and cancer-specific distress were moderate. In the MSI-positive group, 27% of the patients had high general distress at T1 versus 18% at T2 (p = 0.5), whereas in the MSI-negative group, these percentage were 14 and 18% (p = 0.6), respectively. At T1 and T2, cancer-specific distress rates in the MSI-positive group and MSI-negative group were 39 versus 27% (p = 0.3) and 38 versus 36% (p = 1.0), respectively. High levels of general distress were correlated with female gender, low social support and high perceived cancer risk. Moderate levels of distress were observed after MSI testing, similar to those found in other patients diagnosed with CRC. Immediately after result disclosure, high cancer-specific distress was observed in 40% of the MSI-positive patients.
    Full-text · Article · Feb 2012 · Familial Cancer
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    • "An important addition compared to previous national and international guidelines is that surgeons and gastroenterologists (referred to as 'clinicians' in this protocol) have new tasks in calculating, interpretating, and communicating familial CRC risk. Because clinicians are often unfamiliar with these tasks, implementation strategies are needed to ensure that patients and their relatives receive proper counselling and follow-up[14]. In a previous trial, an electronic reminder system specifically aimed at pathologists improved completeness of patient selection for MSI testing [Overbeek LI, Hermens RP, van Krieken JH, Adang E, Casparie M, Akkermans R, Nagengast FM, Ligtenberg MJ, Hoogerbrugge N. A tailored implementation strategy increases involvement of pathologists in the recognition of patients at risk for Lynch syndrome: cluster randomised controlled trial, submitted] In this trial, we will provide support at both clinician and patient level to further implement the guideline. "
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    ABSTRACT: Individuals with multiple relatives with colorectal cancer (CRC) and/or a relative with early-onset CRC have an increased risk of developing CRC. They are eligible for preventive measures, such as surveillance by regular colonoscopy and/or genetic counselling. Currently, most at-risk individuals do not follow the indicated follow-up policy. In a new guideline on familial and hereditary CRC, clinicians have new tasks in calculating, interpreting, and communicating familial CRC risk. This will lead to better recognition of individuals at an increased familial CRC risk, enabling them to take effective preventive measures. This trial compares two implementation strategies (a common versus an intensive implementation strategy), focussing on clinicians' risk calculation, interpretation, and communication, as well as patients' uptake of the indicated follow-up policy. A clustered randomized controlled trial including an effect, process, and cost evaluation will be conducted in eighteen hospitals. Nine hospitals in the control group will receive the common implementation strategy (i.e., dissemination of the guideline). In the intervention group, an intensive implementation strategy will be introduced. Clinicians will receive education and tools for risk calculation, interpretation, and communication. Patients will also receive these tools, in addition to patient decision aids. The effect evaluation includes assessment of the number of patients for whom risk calculation, interpretation, and communication is performed correctly, and the number of patients following the indicated follow-up policy. The actual exposure to the implementation strategies and users' experiences will be assessed in the process evaluation. In a cost evaluation, the costs of the implementation strategies will be determined. The results of this study will help determine the most effective method as well as the costs of improving the recognition of individuals at an increased familial CRC risk. It will provide insight into the experiences of both patients and clinicians with these strategies.The knowledge gathered in this study can be used to improve the recognition of familial and hereditary CRC at both the national and international level, and will serve as an example to improve care for patients and their relatives worldwide. Our results may also be useful in improving healthcare in other diseases. NCT00929097.
    Full-text · Article · Jan 2010 · Implementation Science
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