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HOME | Overall Remarks from Annual Report 2006
Extract from the annual report 2006.
HKHGCR_Annual_Report_2006.pdf - 351K
Overview
Since its establishment in 1995, the Hereditary Gastrointestinal Cancer Registry has maintained its unique role in managing hereditary colorectal cancer (HCRC) families in Hong Kong. This tenth issue of our Annual Report is an official record of the Registry’s work in the year 2006.
2006 has been an eventful and memorable year for the Registry.
Our experience in the management of HCRC has been recognized both internationally and locally with invitation of the Registry staff to deliver talks to distinguished audiences regarding the Registry’s work over more than a decade on HCRC in the Chinese population in Hong Kong (see Report on Research and Academic Activities).
We have excelled in our educational effort in 2006. Throughout the year, we have been actively involved in educating the medical profession, the Registry recruits as well as the general public on colorectal cancer in general and HCRC in particular. Related activities include: publication of educational booklet and psycho-educational manual; talks for the medical professionals as well as for members of the Registry Self-help Groups; publication of the biannual Registry Newsletter; and interviews and articles in the various mass media (see Report on Research and Academic Activities and Report on Public Education and Promotion Activities).
A change in personnel has necessitated the reorganization of the Registry laboratory team. With the help of a number of medical professionals, the Registry has been successful in securing collaboration with a number of local and overseas laboratories and research teams so that we can continue our molecular genetic service for recruited families and can carry on our molecular genetic research related to colorectal cancer.
With the cessation of a regular funding source in 2006, the Registry has invested significant effort in identifying and securing new funding sources (see Report on Fundraising Activities). The Registry staffs have realized and accepted that fundraising would continue to be an important part of our work in order to continue the Registry’s mission of serving HCRC families in Hong Kong. We are forever grateful to the continuous and immense encouragement from friends and recruited members of the Registry. It has been their untiring and timely support that led the Registry through its most trying and difficult times. We are convinced that there is always silver lining to a cloudy sky. Hence, we look back to the year 2006 with thankfulness and we look forward to the year 2007 with all earnestness.
Looking back on 2006
In Hong Kong, colorectal cancer (CRC) is an increasing healthcare burden. According to the latest statistics, CRC is the second commonest cancer and the second cancer killer with 3,582 new cases and 1,538 death cases in 20041. As shown in the following chart (adopted from the Hong Kong Cancer Registry of the Hospital Authority), there has been a progressive increase in the rate of CRC in the past decades.
Comparing two time periods of 1983-1993 vs. 1994-2003, the main increase in colorectal cancer incidence can be attributable to classical, late-onset cancer (age above 50 years old) for which environmental factors have been thought to be the main cause. However, Hong Kong has a much higher incidence of colorectal cancer in the young age group (under 40 years old) than other countries2.
According to international literature, it is estimated that about 5-10% of these patients are predisposed to colorectal cancer due to defects in their genes3-4. The two main types of hereditary colorectal cancers (HCRC) are Familial Adenomatous Polyposis (FAP) and Hereditary Non-Polyposis Colorectal Cancer (HNPCC) syndromes. These are caused by germline mutation of the Adenomatous Polyposis Coli (APC) and Mismatch Repair (MMR) genes, respectively. Members of these families will have 50% chance of inheriting the disease gene and predispose to colorectal cancer and cancers in other sites such as brain, stomach, duodenum, thyroid, female organs and the urinary tract. Moreover, they tend to develop these cancers early in their life. This is reflected in our local data which shows that many of our young colorectal cancer patients are suffering from one of these HCRC syndromes5-6. The psychological and economic burdens on these families are profound.
For these high-risk individuals, pre-symptomatic detection and treatment of precancerous adenomas or early cancers by regular surveillance is the most effective way to prevent colorectal cancer and its associated morbidity and mortality7-12. Recent advances in molecular technology have allowed detection of abnormal genes causing these syndromes6. Genetic diagnosis and predictive genetic testing make it possible to distinguish accurately the disease-gene carriers from those who have not inherited the defective gene within affected families, thus allowing an accurate risk assessment of all the at-risk family members. Those not harbouring the disease gene will be relieved from the psychological burden as well as the chore of continuous surveillance. Resources can then be concentrated on counselling and vigilant surveillance of those carrying the defective gene to prevent cancer development.
Apart from medical management of HCRC families, the psychosocial implication of a hereditary cancer condition on affected families cannot be overlooked. Our previous study has shown that Chinese are relational orientated in their decisional consideration regarding HCRC genetic testing13. In other words, our recruited members regarded the well-being of their significant others to be more important that their own well-being in their decision-making process regarding genetic testing. Besides, individuals with higher perceived cancer risk regarded learning their genetic testing results as more harmful than those with lower perceived risk. These findings have helped us to fine-tune our counselling strategy and to devise psychosocial support programme for our recruited family members14.
Management of these HCRC families requires a multidisciplinary approach and is best organised by a dedicated registry. Since its establishment in 1995, the Hereditary Gastrointestinal Cancer Registry has developed a unique service for these HCRC families in Hong Kong9.
References
1. Fast Stats for Colorectal Cancer 2004. Hong Kong Cancer Registry, Hospital Authority, 2007.
2. Yuen ST, Chung LP, Leung SY, Chan ASY, Ho J, Ho JWC, Wyllie AH. Colorectal carcinomas in Hong Kong: epidemiology and genetic mutations. Br J Cancer 1997; 76: 1610-16.
3. Cannon-Albright LA, Skolnick MH, Bishop DT, Lee RG, Burt RW. Common inheritance of susceptibility to colonic adenomatous polyps and associated colorectal cancer. N Eng J Med 1988; 319: 533-7.
4. Winawer SJ, Fletcher RH, Miller L et al. Colorectal cancer screening: clinical guidelines and rationale. Gastroenterology 1997; 112: 594-642.
5. Chan TL, Yuen ST, Chung LP, Ho JWC, Kwan KYM, Chan ASY, Ho JCY, Leung SY, Wyllie AH. Frequent microsatellite instability and mismatch repair gene mutations in young Chinese patients with colorectal cancer. J Natl Cancer Inst 1999; 91: 1221-6.
6. Ho JWC, Yuen ST. Screening of hereditary colorectal cancer syndrome. Asian J Surg. 2000; 23: 332-43.
7. Ho JWC, Yuen ST, Chung LP, Kwan KYM, Chang TL, Leung SY, Chan ASY, Tse CW, Lam PWY, Luk ISC. Distinct clinical features associated with microsatellite instability in colorectal cancers of young patients. Int J Cancer (Pred Oncol) 2000; 89: 356-360.
8. Ho JW, Chu KM, Tse CW, Yuen ST. Phenotype and management of patients with familial adenomatous polyposis in Hong Kong: perspective of the Hereditary Gastrointestinal Cancer Registry. Hong Kong Med J 2002; 8: 342-7.
9. Ho JWC, Wei R, Chan EMS. Hereditary colorectal cancer syndromes in Hong Kong: a Registry’s perspective. Hereditary Cancer in Clinical Practice 2005; 3: 147-54.
10.Jarvinen HJ. Epidemiology of familial adenomatous polyposis in Finland: impact of family screening on the colorectal cancer rate and survival. Gut 1992; 33: 357-60.
11. Jarvinen HJ, Mecklin JP, Sistonen P. Screening reduces colorectal cancer rate in families with hereditary nonpolyposis colorectal cancer. Gastroenterology 1995; 108: 1405-11.
12. Vasen HFA, van Ballegooijen M, Buskens E et al. A cost effective analysis of colorectal screening of hereditary nonpolyposis colorectal carcinoma gene carriers. Cancer 1998; 82: 1632-37.
13. Ho SMY, Ho JWC, Chan CLW, Kwan K, Tsui YKY. Decisional consideration of hereditary colon cancer genetic test results among Hong Kong Chinese adults. Cancer Epidemiol Biomarker Prev 2003, 15; 426-32.
14. Hope-based intervention study: Psycho-educational component. A framework. Hereditary Gastrointestinal Cancer Registry, Hong Kong, January 2006.
Invited talks in local and overseas conferences
1. Dr. Ho was invited to talk at the Colorectal Cancer Workshop at the International Symposium on Cancer Prevention & Early Detection jointly organized by the Chinese Medical Doctor Association, Peking University School of Oncology, European Cancer Prevention Organization, World Organization for Digestive Endoscopy, Cancer Research & Prevention Foundation, American Cancer Society and Asian Pacific Society of Digestive Endoscopy held at Beijing, China from 21st to 24th April 2006. The title of her talk was “Approach to genetic risk for CRC in a Chinese population.
2. Dr. Ho was invited to deliver a talk at the Surgical Assembly jointly organized by the Hong Kong Sanatorium & Hospital and the Department of Surgery, University of Hong Kong Medical Centre on 25th April 2006. The title of the talk was “Approach to genetic risk for colorectal cancer in a Chinese population”.
3. Dr. Ho was invited to give a talk to the Private Practicing Paediatricians Study Group in their luncheon meeting on 9 June 2006. The title of the talk was “Hereditary colorectal cancer: advances in diagnosis and treatment”.
4. Dr. Ho was invited to talk at the St Teresa’s Hospital CME Special Meeting for Surgeons on 3rd December 2006. The title of her talk was “Approach to colorectal cancer risk in Hong Kong Chinese: ten-year experience”.
Publications
Registry information booklet (Chinese version)
Following publication of the English version of the information booklet titled “Hereditary Colorectal Cancer: A Family Guide” in October last year, the Chinese version of the booklet title “遺傳性結直腸癌~家庭指引” was published in January 2006. This booklet serves as an invaluable educational resource for our recruits as well as the general public. The booklet will be available freely upon request.
Registry psychoeducational manual
Over the years, a protocol for genetic counselling has been established in the Registry. Based on the protocol, a manual titled “Hope-Based Intervention Study, Psycho-Educational Component: A Framework” was published in January 2006. This manual is a conjoint effort of Miss Annie Chu, Dr. Judy Ho and Dr. Samuel Ho. In the manual, separate subsections are written for FAP and HNPCC regarding their respective clinical features, genetic features, clinical management and surveillance protocol. Subsections with revised risk assessment and revised management guidelines are also written for mutated gene carriers as well as genetically normal first-degree relatives.
Apart from serving as a document for our psychosocial intervention programme, the manual is also a useful resource to standardize the psycho-educational process of hereditary colorectal cancer genetic testing for quality assurance. Furthermore, the manual can be used as an educational tool for training future genetic counselors in Hong Kong.
The Registry Newsletter
The first issue of the Registry Newsletter was published in March 2006. In this issue, an invited article was written by one of our recruits, Fung Chun, to share with readers her personal experience of prophylactic surgery for FAP.
The second issue of the Registry Newsletter was published in September 2006. In this second issue, an article was written by Linda summarizing the content of Dr. Judy Ho’s talk on the “phenotypic features of HNPCC mutated gene carriers in Hong Kong” delivered in the HNPCC Self-help Group meeting held in June 2006.
Both issues have been uploaded onto the Registry website (http://www.generations.hk.com/).
Annual Reports in PDF format
HKHGCR_Annual_Report_2006.pdf - 351K
HKHGCR_Annual_Report_2005.pdf - 429K
HKHGCR_Annual_Report_C_2004.pdf Chinese - 393K
HKHGCR_Annual_Report_2004.pdf - 330K
HKHGCR_Annual_Report_2003.pdf - 322K
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