Hereditary cancer registries improve the care of patients with a genetic predisposition to cancer: contributions from the Dutch Lynch syndrome registry.

The Dutch Hereditary Cancer Registry was established in 1985 with the support of the Ministry of Health (VWS). The aims of the registry are: (1) to promote the identification of families with hereditary cancer, (2) to encourage the participation in surveillance programs of individuals at high risk, (3) to ensure the continuity of lifelong surveillance examinations, and (4) to promote research, in particular the improvement of surveillance protocols. During its early days the registry provided assistance with family investigations and the collection of medical data, and recommended surveillance when a family fulfilled specific diagnostic criteria. Since 2000 the registry has focused on family follow-up, and ensuring the quality of surveillance programs and appropriate clinical management. Since its founding, the registry has identified over 10,000 high-risk individuals with a diverse array of hereditary cancer syndromes. All were encouraged to participate in prevention programmes. The registry has published a number of studies that evaluated the outcome of surveillance protocols for colorectal cancer (CRC) in Lynch syndrome, as well as in familial colorectal cancer. In 2006, evaluation of the effect of registration and colonoscopic surveillance on the mortality rate associated with colorectal cancer (CRC) showed that the policy led to a substantial decrease in the mortality rate associated with CRC. Following discovery of MMR gene defects, the first predictive model that could select families for genetic testing was published by the Leiden group. In addition, over the years the registry has produced many cancer risk studies that have helped to develop appropriate surveillance protocols. Hereditary cancer registries in general, and the Lynch syndrome registry in particular, play an important role in improving the clinical management of affected families.

Value-based healthcare in Lynch syndrome.

Lynch syndrome (LS), one of the most frequent forms of hereditary colorectal cancer (CRC), is caused by a defect in one of the mismatch repair (MMR) genes. Carriers of MMR defects have a strongly increased risk of developing CRC and endometrial cancer. Over the last few years, value-based healthcare has been introduced as an approach to the cost-effective delivery of measurable patient value over complete cycles of care. This requires all involved stakeholders to formulate and validate 'patient value' for Lynch syndrome, as well as to identify targets and associated costs. The aim of this study was to develop a value-based care model for Lynch syndrome that can determine patient value and associated costs, and to design a coordinated care pathway from existing guidelines. All specialists in our hospital involved in the management of LS patients evaluated the care delivered to these patients at their department and formulated outcome measures relevant to patient value. Patients were then invited to complete a questionnaire that assessed the importance of these measures on a scale of 1-10. Six high-value outcomes were identified: (1) prevention of cancer or detection of early stage cancer (2) rapid results from MMR gene mutation testing (3) rapid investigation of the colon and uterus (4) no/little pain during colonoscopy and gynaecologic examination/biopsy (5) the offer of psychological help and (6) registration with the Dutch Lynch syndrome registry. A total of 38 (59 %) out of 62 patients completed the questionnaire. The relevance of all outcomes was confirmed by the patients and mean scores varied from 7.2 to 9.9. Patients underscored the relevance of both proper patient education and the efficiency of surveillance during their care cycle. Value-based care delivery for Lynch syndrome includes the implementation of six parameters related to prevention and early detection of cancer, a short cycle time and registration to ensure continuation of care. Estimated costs are 3320 for the first cycle of care ( 3550 including gynaecologic surveillance) and approximately 720 per subsequent annual cycle ( 950 including gynaecologic surveillance).

Persistent and de novo symptoms after cholecystectomy: a systematic review of cholecystectomy effectiveness.

BACKGROUND: Cholecystectomy is the preferred treatment option for symptomatic gallstones, but the exact relationship between cholecystectomies and symptoms still is unclear. This study aimed to assess the effectiveness of elective cholecystectomy for patients with cholecystolithiasis in terms of both persistent and de novo symptoms. METHODS: A systematic literature search was conducted in Pubmed and Embase. The search included studies comprising patients 18 years of age or older undergoing elective cholecystectomy for symptomatic cholecystolithiasis. The proportions of symptoms after cholecystectomy were calculated and then subdivided into persistent and de novo symptoms. RESULTS: A total of 38 studies reported the presence of postcholecystectomy symptoms. The results showed that upper abdominal pain, the main indication for cholecystectomy in the majority of the patients, mostly disappeared after surgery. However, it persisted in up to 33 % of the patients and arose de novo in up to 14 %. Diarrhea (85 %) and constipation (76 %) were the persistent symptoms most often reported, whereas upper abdominal pain and vomiting were the least often reported. Flatulence (62 %) was the most often reported new symptom. However, large variations in symptoms were found between studies. CONCLUSIONS: The review indicates that cholecystectomy often is ineffective with regard to persistent and de novo symptoms. The finding that the types and proportions of persistent symptoms differ from those that arise de novo suggests that this distinction may be useful in predicting which patients would and which would not benefit from a cholecystectomy.

Outcome measurement in laparoscopic cholecystectomy by using a prospective complication registry: results of an audit.

OBJECTIVE: The aim was to assess and discuss the utility of a complication registry for determining outcome and delivered care in surgery. METHOD: All patients with Laparoscopic Cholecystectomy between 1998 and 2006 were analysed. Complications were prospectively documented and evaluated according to outcome measures mentioned in literature (bile duct injury, morbidity, mortality and conversion rate) for Laparoscopic Cholecystectomy. In addition, all patient files were evaluated for possible risk factors and non-registered complications. RESULTS: One thousand two hundred fifty four Laparoscopic Cholecystectomies were performed, with 207 complications in 152 (12%) patients. Eighteen (9%) events were additionally found after evaluating all medical files. Thirteen (1%) bile duct injuries occurred, 7% (n = 91) morbidity, no mortality and 18% (n = 226) conversion rate. The probability of complications was significantly higher in patients diagnosed with complicated gallstone disease, ASA 3/4, > 70 years, acute and converted procedures. Thirty % (n = 63) of all documented adverse events reflected issues other than traditionally mentioned outcome measures, categorised as hospital-provider errors or miscellaneous. CONCLUSION: Ninety % of all complications in laparoscopic cholecystectomy were documented in our registry. Factors associated with a high probability of complications were identified and 30% of all events reflected issues other than traditionally mentioned outcome measures for Laparoscopic Cholecystectomy. The registry can be used for outcome measurement, however differences in case mix and data collection methods should be taken into account.